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Blitz
Hi All,

I'm fairly new here, so I just thought I'd introduce myself and give my relevant background. Any suggestions and advice from you experts would be most appreciated.

I'm a 30 year old male, and have been suffering from chronic fatigue since a few months after my 18th birthday (almost 12 years now). At that time I got hives, which my doctor dismissed as just a food allergy that would pass. It ended up lasting about a month in total. During this period, I took Benadryl and felt sleepy and fatigued, which we assumed was the drowsy effect of Benadryl. However, once the hives disappeared and I stopped taking Benadryl, the fatigue continued.

I brought this to the attention of my family doctor when it still hadn't gone away a few months later. She ran a few tests, including mono, and it came back positive that I had it in the past. I also complained of depression, and was put on Zoloft. Unfortunately, that doctor quit the profession altogether about a year later, and pretty much left me stranded.

Then, about a year and half ago I managed to finally get a family doctor. He started with a full physical, including standard bloodwork, and the only item flagged there was low folates, for which I was instructed to take Folic Acid supplements.

Based on my condition, he started referring me... first to an allergist (grass and cats), then a sleep lab for an overnight study (negative for apnea and restless legs), and then a rheumatologist (negative bloodwork).

My new family doc seemed pretty receptive to ideas, so I recently started making suggestions based on my years of research into possible causes of my condition. One of these was Celiac, so we did the test a few weeks ago, and the result came back this week as positive for all three tests he did. I'm not sure exactly what tests they were specifically, but I'm going to try and get a copy of them.

I'm now being referred to a GI specialist, who I'm told will probably want to do a biopsy. But it could take a while just to get the first appointment.

Family-wise, there's only one person I know of that diagnosed celiac disease, and it's my Mother's Father's Sister's Son (my cousin). However, my mother has had a fair bit of GI trouble over the years, which she was told was Irritable Bowel Syndrome. She said she has never been tested for celiac disease, so I'm thinking maybe she should get it done, because if she comes back positive it may explain a few things.

So, it would appear in retrospect that I was probably genetically predisposed to celiac disease, and then the mono I got when I was 18 triggered it to start.

Needless to say I'm pretty anxious about the whole situation. My current condition is not very good, as the chronic fatigue has gotten progressively worse over the past 11.5+ years. I'm not able to do much of any strenuous physical activity, and at the end of the day I'm completely exhausted. I've also noticed some mental fogginess and memory problems creeping in over the years. And I'm in the unfortunate position of being self-employed (IT consulting) and without any disability insurance. So, I have to keep working to make a living.

So, in the meantime I've started rummaging around the net looking for info. A lot of what I've found suggests that I shouldn't start on a gluten-free diet until I've had the biopsy, as it can skew the results negatively. But I think I'll probably give it a try after that, regardless of what the outcome of those tests are.

Sorry for the long post guys. If anyone has any information or suggestions, I'd be really glad to hear them.

Thanks in advance!

Blitz.
confused
Welcome,
You have came to the right place. Once you go gluten free you will feel so much better, You might also have to give up dairy for the first 6 months to, cause it can cause some of the same symptoms as gluten.
Once you are diagnosed your close relatives should be tested.

Some do not wait for the biopsy to start gluten free if the blood work is high enought, but an biopsy is a good idea if they are looking for other diseases. I for one took the blood work results and ran but then again i have DH also, so there is no way going around the fact i have celiac.

If you have any questions please feel free to ask.

paula
elye
Welcome, Blitz!
If your blood panel was positive, you have celiac. There are no false positives, only false negatives. Therefore, having a subsequent biopsy will not strengthen the evidence that you have the illness, as you certainly do. It will determine if your lower intestine has sustained any damage, and the extent of it. Many people are so ill from gluten that they will start the g/f diet immediately after the positive blood work, not wanting to prolong the ordeal for a biopsy that may not offer any other information.
It's up to you to decide if you need to have the biopsy done, but I know if I were sick, I'd be running as far away from gluten as possible, immediately. Good luck!
Blitz
QUOTE (elye @ Jan 13 2008, 05:14 PM) *
If your blood panel was positive, you have celiac. There are no false positives, only false negatives.

One of the blood tests was really high too... something like 132 (normal is < 19.9). I'll figure out which one when I get a copy from the doc's office.

QUOTE (elye @ Jan 13 2008, 05:14 PM) *
Therefore, having a subsequent biopsy will not strengthen the evidence that you have the illness, as you certainly do. It will determine if your lower intestine has sustained any damage, and the extent of it.

It sounds like having the biopsy may be redundant in my case, because of the positive blood tests. I guess it would be more necessary if they were indeterminate.

QUOTE (elye @ Jan 13 2008, 05:14 PM) *
Many people are so ill from gluten that they will start the g/f diet immediately after the positive blood work, not wanting to prolong the ordeal for a biopsy that may not offer any other information. It's up to you to decide if you need to have the biopsy done, but I know if I were sick, I'd be running as far away from gluten as possible, immediately. Good luck!

I must admit I'm very anxious to start on the g/f diet and hopefully start feeling better. There's probably no better time, as I'm currently single and living alone. Although I'd have to do a major clean-out of all the offending items.

Thanks for all your advice, it's most appreciated! biggrin.gif

Blitz.
Blitz
QUOTE (confused @ Jan 13 2008, 10:12 AM) *
Once you go gluten free you will feel so much better, You might also have to give up dairy for the first 6 months to, cause it can cause some of the same symptoms as gluten.

I've read that, but how do I know if that's the case? Or is it recommended to just automatically give up both at the first, and then try adding milk back in later?

QUOTE (confused @ Jan 13 2008, 10:12 AM) *
Once you are diagnosed your close relatives should be tested.

Well, I'm an only child, so no worries about siblings (although my Dad has children from a previous marriage). My Mother's the one with all the GI problems and food allergies, and it's also her side of the family with a known celiac, so I told her today to just get tested next time she's at the doctor's.

QUOTE (confused @ Jan 13 2008, 10:12 AM) *
Some do not wait for the biopsy to start gluten free if the blood work is high enought, but an biopsy is a good idea if they are looking for other diseases. I for one took the blood work results and ran but then again i have DH also, so there is no way going around the fact i have celiac.

Okay, but going g/f wouldn't affect any biopsy results for other diseases would it?

Thanks!

Blitz.
aikiducky
You know, if you can hang in there until after the biopsy I would urge you to have it done now. Then go gluten free immediately afterwards whatever the results say. But having a positive biopsy means no doctor will have grounds for doubting your diagnosis in the future, and since we are talking about all of the rest of your life, that might come in handy some time in the future. It's also a requirement if you ever want to take part in a study for example.

I went gluten free before having any testing, and though I don't need an official diagnosis for my own motivation - I get sick enough from gluten that I never want to eat it again - it sure would be handy sometimes to have an official diagnosis. And the only time that can reliably happen is before you go gluten free.

Pauliina
Lizz7711
You might want to look into how your adrenals are doing....the extreme fatigue is probably due to them being totally fatigued after years of dealing with gluten coming into your system and immune system in active gear all the time. My doc prescibed cortef (low level hydrocortisone) for me based on symptoms (many) of adrenal fatigue and I felt so much better just in a couple days. There are blood tests I think, but alot of people do saliva testing for cortisol levels. Also you should check your thyroid function as well as iron, total iron binding capacity, % saturation, and ferritin especially. Low iron/ferritin can definitely cause low energy and is caused by either hypothyroid and/or malabsorption from celiac.

I recently had positive blood tests as well, and have been gluten-free and CF (casein free) for the past two months. I'm going to skip the biopsy I think, although i'm still thinking about it for the reasons one person mentioned, the diagnosis might come in handy sometime...then again it might bite me by causing uninsurability? not sure about all that yet though.

Good luck!


QUOTE (Blitz @ Jan 13 2008, 01:17 AM) *
Hi All,

I'm fairly new here, so I just thought I'd introduce myself and give my relevant background. Any suggestions and advice from you experts would be most appreciated.

I'm a 30 year old male, and have been suffering from chronic fatigue since a few months after my 18th birthday (almost 12 years now). At that time I got hives, which my doctor dismissed as just a food allergy that would pass. It ended up lasting about a month in total. During this period, I took Benadryl and felt sleepy and fatigued, which we assumed was the drowsy effect of Benadryl. However, once the hives disappeared and I stopped taking Benadryl, the fatigue continued.

I brought this to the attention of my family doctor when it still hadn't gone away a few months later. She ran a few tests, including mono, and it came back positive that I had it in the past. I also complained of depression, and was put on Zoloft. Unfortunately, that doctor quit the profession altogether about a year later, and pretty much left me stranded.

Then, about a year and half ago I managed to finally get a family doctor. He started with a full physical, including standard bloodwork, and the only item flagged there was low folates, for which I was instructed to take Folic Acid supplements.

Based on my condition, he started referring me... first to an allergist (grass and cats), then a sleep lab for an overnight study (negative for apnea and restless legs), and then a rheumatologist (negative bloodwork).

My new family doc seemed pretty receptive to ideas, so I recently started making suggestions based on my years of research into possible causes of my condition. One of these was Celiac, so we did the test a few weeks ago, and the result came back this week as positive for all three tests he did. I'm not sure exactly what tests they were specifically, but I'm going to try and get a copy of them.

I'm now being referred to a GI specialist, who I'm told will probably want to do a biopsy. But it could take a while just to get the first appointment.

Family-wise, there's only one person I know of that diagnosed celiac disease, and it's my Mother's Father's Sister's Son (my cousin). However, my mother has had a fair bit of GI trouble over the years, which she was told was Irritable Bowel Syndrome. She said she has never been tested for celiac disease, so I'm thinking maybe she should get it done, because if she comes back positive it may explain a few things.

So, it would appear in retrospect that I was probably genetically predisposed to celiac disease, and then the mono I got when I was 18 triggered it to start.

Needless to say I'm pretty anxious about the whole situation. My current condition is not very good, as the chronic fatigue has gotten progressively worse over the past 11.5+ years. I'm not able to do much of any strenuous physical activity, and at the end of the day I'm completely exhausted. I've also noticed some mental fogginess and memory problems creeping in over the years. And I'm in the unfortunate position of being self-employed (IT consulting) and without any disability insurance. So, I have to keep working to make a living.

So, in the meantime I've started rummaging around the net looking for info. A lot of what I've found suggests that I shouldn't start on a gluten-free diet until I've had the biopsy, as it can skew the results negatively. But I think I'll probably give it a try after that, regardless of what the outcome of those tests are.

Sorry for the long post guys. If anyone has any information or suggestions, I'd be really glad to hear them.

Thanks in advance!

Blitz.

Blitz
QUOTE (Lizz7711 @ Jan 14 2008, 09:56 PM) *
You might want to look into how your adrenals are doing....the extreme fatigue is probably due to them being totally fatigued after years of dealing with gluten coming into your system and immune system in active gear all the time. My doc prescibed cortef (low level hydrocortisone) for me based on symptoms (many) of adrenal fatigue and I felt so much better just in a couple days. There are blood tests I think, but alot of people do saliva testing for cortisol levels. Also you should check your thyroid function as well as iron, total iron binding capacity, % saturation, and ferritin especially. Low iron/ferritin can definitely cause low energy and is caused by either hypothyroid and/or malabsorption from celiac.

I recently had positive blood tests as well, and have been gluten-free and CF (casein free) for the past two months. I'm going to skip the biopsy I think, although i'm still thinking about it for the reasons one person mentioned, the diagnosis might come in handy sometime...then again it might bite me by causing uninsurability? not sure about all that yet though.

Good luck!


Thanks for your input. I'll definitely talk to my family doctor about doing those additional blood/saliva tests, if there weren't already done recently (I had a physical not too long ago, but not sure what blood tests were done).

My appointment with the GI specialist is next Monday. I think once I talk to this guy I'll have a better idea of the timeline.

In terms of medical insurability, I don't have to worry about that here in Canada (socialized healthcare and all). But I do wonder about travel medical insurance, and other insurances, like life, disability, etc. I guess there's no harm in talking with the GI specialist, as he can't make any final diagnosis without doing the biopsy, so far as I understand. That way I'm still leaving my options open.
Lizz7711
Your regular doctor and GI guy most likely will now know much about adrenal testing (or think it's important). They will know about testing for hypothyroid--i'd be sure to ask for TSH, free T4 and free T3 for that. For more "unorthodox" but highly informative info on thyroid/adrenal issues go here: www.stopthethyroidmadness.com Click on the left of main page for adrenal info....your symptoms are SO indicative of adrenal burn-out and/or hypothyroid...but it's important to treat adrenal problems first since the body will not use the thyroid meds if adrenals aren't working. If you can find a good doctor who's into holistic medicine that would be the best situation.

With the gluten thing...if you feel better off gluten, you are sensitive no matter what the blood tests or endoscopy says. For other testing if interested, alot of people use entero lab online for stool testing of antibodies. www.enterolab.com there's a lot of good info on their website as well about celiac etc.

good luck!
Liz


QUOTE (Blitz @ Jan 16 2008, 11:44 AM) *
Thanks for your input. I'll definitely talk to my family doctor about doing those additional blood/saliva tests, if there weren't already done recently (I had a physical not too long ago, but not sure what blood tests were done).

My appointment with the GI specialist is next Monday. I think once I talk to this guy I'll have a better idea of the timeline.

In terms of medical insurability, I don't have to worry about that here in Canada (socialized healthcare and all). But I do wonder about travel medical insurance, and other insurances, like life, disability, etc. I guess there's no harm in talking with the GI specialist, as he can't make any final diagnosis without doing the biopsy, so far as I understand. That way I'm still leaving my options open.

Blitz
QUOTE (Lizz7711 @ Jan 16 2008, 03:06 PM) *
Your regular doctor and GI guy most likely will now know much about adrenal testing (or think it's important). They will know about testing for hypothyroid--i'd be sure to ask for TSH, free T4 and free T3 for that. For more "unorthodox" but highly informative info on thyroid/adrenal issues go here: www.stopthethyroidmadness.com Click on the left of main page for adrenal info....your symptoms are SO indicative of adrenal burn-out and/or hypothyroid...but it's important to treat adrenal problems first since the body will not use the thyroid meds if adrenals aren't working. If you can find a good doctor who's into holistic medicine that would be the best situation.

With the gluten thing...if you feel better off gluten, you are sensitive no matter what the blood tests or endoscopy says. For other testing if interested, alot of people use entero lab online for stool testing of antibodies. www.enterolab.com there's a lot of good info on their website as well about celiac etc.


Thanks for the great info... but wow, do I ever feel overloaded these days. smile.gif

I'm guessing the best thing to do is start on a gluten-free diet first, and see if things improve, before requesting additional tests? In any case I will discuss the adrenal/thyroid issue with the GI specialist and/or my family doctor.

Blitz
Hi All,

I neglected to mention some additional symptoms in my original post, so here they are now:

1. Excessive Perspiration - mostly underarms, but feet also. Been experiencing this for at least 10 years, maybe since the beginning of this journey even.
2. Clammy Feeling - probably related to #1. It doesn't take much to get me sweating and clammy, just a cup of hot tea will do it.
2. Hives - returned about 1.5 years ago (after a 10 year hiatus from the original bout during mono), and are kept at bay with a double-dose of Reactine every day (as instructed by my doctor).

Not sure if these have anything to do with celiac disease, but if anyone has any comments, I'm all ears. smile.gif

Thanks in advance!

Geoff.
Lizz7711
QUOTE (Blitz @ Jan 18 2008, 11:23 PM) *
Thanks for the great info... but wow, do I ever feel overloaded these days. smile.gif

I'm guessing the best thing to do is start on a gluten-free diet first, and see if things improve, before requesting additional tests? In any case I will discuss the adrenal/thyroid issue with the GI specialist and/or my family doctor.



I would go gluten-free, and probably casein(dairy) free also. The proteins are extremely similar which is why the body often has a problem with both...but some people report being able to add dairy back in later, not gluten though. The endoscopy is valuable to know how much damage to the villi you have, but there is alwasy a chance they will take the samples from spots without the damage. If I was in your shoes, and wasn't already gluten-free, I might go ahead with the endoscopy, just because I like to KNOW what's going on in my body!

This is a link to the myriad of symptoms of hypothyroid:
http://www.stopthethyroidmadness.com/long-...a7ad15755dde564

And here is a link from teh same website to the symptoms of adrenal fatigue:
http://www.stopthethyroidmadness.com/adren...s-low-cortisol/

The sweating relates to the thyroid because it is so involved in temperature regulation of the body. Try taking your temp throughout the day. Most with hypothyroid have low temps and those with adrenal have low and also irregular/unstable, one day it's 97, one day it's 97.9 etc.

good luck!
Liz
Blitz
Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that. cool.gif

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)
Gliadin IgG ABS. - 53 (norm. is < 19.99)
Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz. smile.gif

Cheers,

-Geoff.

Lizz7711
QUOTE (Blitz @ Jan 21 2008, 05:13 PM) *
Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that. cool.gif

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)
Gliadin IgG ABS. - 53 (norm. is < 19.99)
Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz. smile.gif

Cheers,

-Geoff.


If I was in your shoes i'd probably do the biopsy too...hope it goes well and let us know the results! Since I may still decide to do it too (i've only been gluten-free for 2 months), i'm curious as to what it's like! Kind of alarming his comment about 100 GI's. But I do think the regular med. establishment is starting to catch up with the realities of the limitations of the "classic celiac" case, another 5 years and I really think the whole "celiac disease/gluten sensitivity" issue will be completely redefined.

I guess since i've got the positive blood tests too i'm in the same boat regarding the insurance issue--good to know. I didn't have tTG done though, wish i had. (well i did via stool sample and it was positive there).

With TSH, many doctors now regard anything over 2.5 as suspect for hypothyroid if combined with patient having symptoms.

Good luck with the biopsy! smile.gif
Liz
happygirl
Geoff,

Good luck with your biopsy. Before the procedure, discuss with your GI that you want 'multiple biopsies in multiple locations' taken. Celiac Disease damage can be patchy, so it can be missed by taking one biopsy. Taking more biopsies/multiple places increases the chances of an accurate biopsy.

Your blood tests are certainly indicative of Celiac. However, a biopsy can confirm it, find out the level of damage, look for other problems, etc.

dbmamaz
I know it might be different in canada, but I worked for a travel insurance company and first of all, we would cover pre-existing conditions if you bought the insurance within 2 weeks of buying the trip (rather than waiting until the week before the trip, when you already knew u were too sick to travel). And even if you didnt have the pre-ex waiver, you'd still be covered for other things not related to your illness - so while a hospital visit for a severe food reaction might not be covered, a broken leg, the flu, that sort of thing would still have been covered.
Lizz7711
Hi Geoff,

How did the biopsy go? Any results back yet? How was the experience?

hoping all is well,
Liz



QUOTE (Blitz @ Jan 21 2008, 05:13 PM) *
Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that. cool.gif

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)
Gliadin IgG ABS. - 53 (norm. is < 19.99)
Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz. smile.gif

Cheers,

-Geoff.

Blitz
QUOTE (Lizz7711 @ Jan 27 2008, 03:23 PM) *
How did the biopsy go? Any results back yet? How was the experience?


Thanks for asking... biggrin.gif I actually just had it done today. It wasn't all that bad, except my throat is pretty sore... I guess that's to be expected when they're ramming things down there. Mind you, I prefer that to ramming things up the other end (which I've never had done... yet, thankfully).

The GI doc said that just based on the visuals (I thought it was microscopic?), he's pretty sure it'll come back positive. However, the lab results won't be in until Friday, so I'm supposed to call his office next Monday to get the final diagnosis.

But it doesn't really matter, as I already started the gluten-free diet last Tuesday, and am slowly adjusting to it. I haven't bothered cutting out milk yet, as some have suggested, simply because it's too much all at once (besides, I like milk on my cereal... gluten-free that is). However, I am going to ask my family doc to do the test for anti-casein, plus the thyroid/adrenal stuff, during my next appt., which happens to be scheduled for next week.

Thanks for all your support!

-Geoff.
Blitz
QUOTE (dbmamaz @ Jan 22 2008, 09:22 AM) *
I know it might be different in canada, but I worked for a travel insurance company and first of all, we would cover pre-existing conditions if you bought the insurance within 2 weeks of buying the trip (rather than waiting until the week before the trip, when you already knew u were too sick to travel). And even if you didnt have the pre-ex waiver, you'd still be covered for other things not related to your illness - so while a hospital visit for a severe food reaction might not be covered, a broken leg, the flu, that sort of thing would still have been covered.


I would assume (ignorantly perhaps) that the rules for this type of insurance would be pretty much the same everywhere. But thanks to your explanation I now know why they always ask when you bought your plane tickets when buying travel insurance. But, since I didn't have any diagnosed pre-existing condition until the recent Celiac Dx, I never had to worry about it before. But this is good information for any future travels, which I'm sure there will be.

Thanks!

-Geoff.
Blitz
QUOTE (Lizz7711 @ Jan 21 2008, 09:10 PM) *
If I was in your shoes i'd probably do the biopsy too...hope it goes well and let us know the results! Since I may still decide to do it too (i've only been gluten-free for 2 months), i'm curious as to what it's like! Kind of alarming his comment about 100 GI's. But I do think the regular med. establishment is starting to catch up with the realities of the limitations of the "classic celiac" case, another 5 years and I really think the whole "celiac disease/gluten sensitivity" issue will be completely redefined.


My GP is fairly young (probably not much older than me, and I'm 30), so the presumption is that he might be a bit more "up" on this kind of thing than an older doctor would be. The GI specialist is older though, my guess would be 60's, but he seems to know what he's doing, and both my parents have seen him before (for other conditions like ulcerated colitis).

It sure looks as though the whole celiac disease issue is coming to a boiling point, and I suspect you may well be right about it being redefined in the next few years. And frankly it needs to be, because nobody should have to wait 12 years to get diagnosed properly like I did (through 4 different GP's too!).

QUOTE (Lizz7711 @ Jan 21 2008, 09:10 PM) *
I guess since i've got the positive blood tests too i'm in the same boat regarding the insurance issue--good to know. I didn't have tTG done though, wish i had. (well i did via stool sample and it was positive there).


The other possibility, as has been mentioned before, is excluding illnesses related to the condition. So you'd still be covered for a heart attack, stroke, breast cancer, etc... but not for intestinal lymphomas and the like.

QUOTE (Lizz7711 @ Jan 21 2008, 09:10 PM) *
With TSH, many doctors now regard anything over 2.5 as suspect for hypothyroid if combined with patient having symptoms.


That's good info to know. I'll certainly mention that to my GP when I see him next week.

Cheers,

-Geoff.
Lizz7711
Good to hear everything went ok smile.gif

It is a big change and I can understand not wanting to tackle it all at once with dairy. But for me cutting both out at the same time helped me to not get dependent on all the dairy stuff. I think many celiacs eat lots of dairy because it fills the gap--but then they don't heal because their body hates the casein too! So see how you do...but I'd recommend weaning off dairy as soon as possible. And then they say some people can add it in after healing the intestines for some time. If you're not already, i'd at least switch to organic milk until you decide to go off milk. We use rice milk. Soy milk is also too close in protein structure to casein and gluten so the body oftne has the same problem with it.

good luck and let us know the results, take care,
Liz


QUOTE (Blitz @ Jan 30 2008, 12:24 AM) *
Thanks for asking... biggrin.gif I actually just had it done today. It wasn't all that bad, except my throat is pretty sore... I guess that's to be expected when they're ramming things down there. Mind you, I prefer that to ramming things up the other end (which I've never had done... yet, thankfully).

The GI doc said that just based on the visuals (I thought it was microscopic?), he's pretty sure it'll come back positive. However, the lab results won't be in until Friday, so I'm supposed to call his office next Monday to get the final diagnosis.

But it doesn't really matter, as I already started the gluten-free diet last Tuesday, and am slowly adjusting to it. I haven't bothered cutting out milk yet, as some have suggested, simply because it's too much all at once (besides, I like milk on my cereal... gluten-free that is). However, I am going to ask my family doc to do the test for anti-casein, plus the thyroid/adrenal stuff, during my next appt., which happens to be scheduled for next week.

Thanks for all your support!

-Geoff.

Blitz
QUOTE (Lizz7711 @ Jan 31 2008, 09:37 AM) *
Good to hear everything went ok smile.gif

It is a big change and I can understand not wanting to tackle it all at once with dairy. But for me cutting both out at the same time helped me to not get dependent on all the dairy stuff. I think many celiacs eat lots of dairy because it fills the gap--but then they don't heal because their body hates the casein too! So see how you do...but I'd recommend weaning off dairy as soon as possible. And then they say some people can add it in after healing the intestines for some time. If you're not already, i'd at least switch to organic milk until you decide to go off milk. We use rice milk. Soy milk is also too close in protein structure to casein and gluten so the body oftne has the same problem with it.

good luck and let us know the results, take care,
Liz


Hi Liz,

Actually, I do drink rice milk some of the time, and I have been known to put it on cereal. However, I'm a big tea granny (English upbringing), and I can't stand my Tetley w/o milk. And rice milk just does not work in tea for some reason.

I'm going to ask my GP for the anti-casein test (or whatever it's called), and then hopefully I'll know whether I have to cut that out or not. I'd rather not if I don't have to.

Btw, can you tell me where you read that info about the TSH over 2.5 with symptoms = hypothyroid? I'd like to have something concrete to take to my doctor, in case he rebuffs my request for the additional tests. When I mentioned possible hypothyroid to the GI doc he rejected it saying my TSH was within normal range (0.35 - 5.00). But then again this isn't his area of specialty, so perhaps he just isn't up to date on the developments.

Thanks!

-Geoff.
Lizz7711
QUOTE (Blitz @ Jan 31 2008, 10:59 PM) *
Hi Liz,

Actually, I do drink rice milk some of the time, and I have been known to put it on cereal. However, I'm a big tea granny (English upbringing), and I can't stand my Tetley w/o milk. And rice milk just does not work in tea for some reason.

I'm going to ask my GP for the anti-casein test (or whatever it's called), and then hopefully I'll know whether I have to cut that out or not. I'd rather not if I don't have to.

Btw, can you tell me where you read that info about the TSH over 2.5 with symptoms = hypothyroid? I'd like to have something concrete to take to my doctor, in case he rebuffs my request for the additional tests. When I mentioned possible hypothyroid to the GI doc he rejected it saying my TSH was within normal range (0.35 - 5.00). But then again this isn't his area of specialty, so perhaps he just isn't up to date on the developments.

Thanks!

-Geoff.



My parents are both Brits as well, so I grew up with tea every morning and afternoon, milk and sugar. I especially remember yummy tea when I'd have it in England at relatives' houses in the real teacups...somehow it tasted better!

But I sort of weaned my self off of tea as I started drinking coffee years ago...then when my mom died of cancer a couple years ago...I decided to wean myself off of coffee. So now I drink mainly green tea (many varieties) with honey every day, coffee maybe once every couple weeks, and regular black tea with rice milk very rarely. It'll never taste as good as the real thing I know! sad.gif

About the TSH, that is info my doctor told me, but I do know i've also read something about it...i'll try to dig up some info. The website I gave you earlier (stopthethyroidmadness.com) might have that info and maybe reference for it, not sure. As I said before, your symptoms scream of low adrenal function, and even if your thyroid is hypo, you'd want to treat the adrenal issue first--even my holistic doc wasn't real up on that though and I had to ask him for a prescription for low-dose hydrocortisone --I got my info from above website plus some other links/books (Adrenal Fatigue/21st century syndrome by Wilson). The above website also gives some home self-tests you can do to test adrenals, such as looking in a mirror and holding a flashlight across the path of your eyes (not directly at them) and looking at your pupils...they should constict and stay consticted. If they constict and then within a few seconds start fluctuating, trying to dilate, that indicates adrenal fatigue. Another thing to do is take your temp throughout the day and see how much it varies . With hypothyroid, you will have a low body temp, with adrenal fatigue your temp will be low, but it will also be kind of all over and unstable. Another classic adrenal fatigue symptom is feeling dizzy when standing up quickly..it indicates your blood pressure dropping when you stand, where it should be rising. That is something the doc CAN test...he can take your BP sitting, lying down, and then standing. one after the otehr. If it drops by 20 points when standing, you probably have adrenal fatigue.

Once I started treating my adrenals, I retested my TSH and it went from 2.54 to 7.9--clearly hypothyroid. So I think somehow the poor adrenal function was masking the severity of my hypothyroid, and then when the adrenals were taken care of, they hypothyroid became evident.

Like I said, i'll try to find more "reputable " info if I can...when is your appointment?
take care,
Liz
Blitz
QUOTE (Lizz7711 @ Feb 1 2008, 02:48 PM) *
My parents are both Brits as well, so I grew up with tea every morning and afternoon, milk and sugar. I especially remember yummy tea when I'd have it in England at relatives' houses in the real teacups...somehow it tasted better!

But I sort of weaned my self off of tea as I started drinking coffee years ago...then when my mom died of cancer a couple years ago...I decided to wean myself off of coffee. So now I drink mainly green tea (many varieties) with honey every day, coffee maybe once every couple weeks, and regular black tea with rice milk very rarely. It'll never taste as good as the real thing I know! sad.gif

About the TSH, that is info my doctor told me, but I do know i've also read something about it...i'll try to dig up some info. The website I gave you earlier (stopthethyroidmadness.com) might have that info and maybe reference for it, not sure. As I said before, your symptoms scream of low adrenal function, and even if your thyroid is hypo, you'd want to treat the adrenal issue first--even my holistic doc wasn't real up on that though and I had to ask him for a prescription for low-dose hydrocortisone --I got my info from above website plus some other links/books (Adrenal Fatigue/21st century syndrome by Wilson). The above website also gives some home self-tests you can do to test adrenals, such as looking in a mirror and holding a flashlight across the path of your eyes (not directly at them) and looking at your pupils...they should constict and stay consticted. If they constict and then within a few seconds start fluctuating, trying to dilate, that indicates adrenal fatigue. Another thing to do is take your temp throughout the day and see how much it varies . With hypothyroid, you will have a low body temp, with adrenal fatigue your temp will be low, but it will also be kind of all over and unstable. Another classic adrenal fatigue symptom is feeling dizzy when standing up quickly..it indicates your blood pressure dropping when you stand, where it should be rising. That is something the doc CAN test...he can take your BP sitting, lying down, and then standing. one after the otehr. If it drops by 20 points when standing, you probably have adrenal fatigue.

Once I started treating my adrenals, I retested my TSH and it went from 2.54 to 7.9--clearly hypothyroid. So I think somehow the poor adrenal function was masking the severity of my hypothyroid, and then when the adrenals were taken care of, they hypothyroid became evident.

Like I said, i'll try to find more "reputable " info if I can...when is your appointment?


Wow, thanks for all the great info. I did take a peek around that website a few weeks back, when you originally mentioned it, but methinks I should go back and review it. Just in my initial perusal now, I noticed there is some mention of the TSH >2.5 + symptomatic = hypo, but it's a bit vague and spread out.

My appointment with my GP is on Wednesday afternoon, so there's no immediate rush. If you can help, that would be much appreciated. And if not, I'll just work with what I've got already. My doctor has been fairly receptive to requests for various tests in the past (that's how we found the celiac in the first place), so I'm hoping that will continue. And hopefully the tests are covered, unlike the celiac panel which cost me $125 out of pocket (money well spent though!).

Thanks again Liz.. you've been a tremendous help!

Cheers,

-Geoff.
Blitz
Well, I just got off the phone with the GI specialist, and the biopsy result was (drumroll please)..... total villious atrophy. I'm glad I did the procedure, as it leaves no doubt as to whether or not I have celiac disease (it's the "gold standard" after all).

Cheers,

-Geoff.

aikiducky
Does it sound too weird to say congratulations? tongue.gif huh.gif smile.gif Of course I wouldn't wish celiac disease on anyone, but if you have it, it's nice to at least have a gold standard diagnosis...

Here's to a smooth adjustment to the gluten free life!

Pauliina
Lizz7711
QUOTE (Blitz @ Feb 4 2008, 01:25 PM) *
Well, I just got off the phone with the GI specialist, and the biopsy result was (drumroll please)..... total villious atrophy. I'm glad I did the procedure, as it leaves no doubt as to whether or not I have celiac disease (it's the "gold standard" after all).

Cheers,

-Geoff.


Hi Geoff,

well, no doubt about it now eh? Now you can start healing--besides the diet i've heard alot of people recommend probiotic supplements and L-glutamine for intestinal healing, vitamin c, iron + calcium (for malabsorption issues), and also staying away from harder to digest foods for a while like beans and nuts/seeds. Anyway, i'm sure you'll do fine, good luck and God bless on the new journey smile.gif

Liz

p.s. i've got a big exam tomorrow, but if I get a chance I will try to find some info on the hypothyroid question tomorrow night! no promises though! rolleyes.gif
Blitz
QUOTE (Lizz7711 @ Feb 4 2008, 09:12 PM) *
Hi Geoff,

well, no doubt about it now eh? Now you can start healing--besides the diet i've heard alot of people recommend probiotic supplements and L-glutamine for intestinal healing, vitamin c, iron + calcium (for malabsorption issues), and also staying away from harder to digest foods for a while like beans and nuts/seeds. Anyway, i'm sure you'll do fine, good luck and God bless on the new journey smile.gif

Liz

p.s. i've got a big exam tomorrow, but if I get a chance I will try to find some info on the hypothyroid question tomorrow night! no promises though! rolleyes.gif


As always, thanks for the support!

No worries on those references. I'm sure I've got enough already to keep the doc busy for a while, what with the various blood test requests. The actual interpretation part will come later. smile.gif

Cheers,

-Geoff.
Lizz7711
QUOTE (Blitz @ Feb 4 2008, 11:16 PM) *
As always, thanks for the support!

No worries on those references. I'm sure I've got enough already to keep the doc busy for a while, what with the various blood test requests. The actual interpretation part will come later. smile.gif

Cheers,

-Geoff.


sorry I couldn't get around to doing the research! hope your doc is up on the latest with these labs...just remember to ask for free T3 and freeT4 if you didn't get those yet. Low iron also is often associated with hypothyroid, and celiac of course, so you should check TIBC (total iron binding capacity) and ferritin.

hope it goes well!
Liz
Blitz
QUOTE (Lizz7711 @ Feb 6 2008, 09:24 AM) *
sorry I couldn't get around to doing the research! hope your doc is up on the latest with these labs...just remember to ask for free T3 and freeT4 if you didn't get those yet. Low iron also is often associated with hypothyroid, and celiac of course, so you should check TIBC (total iron binding capacity) and ferritin.

hope it goes well!
Liz


Liz, as I said before, no worries about that. I know people are busy, it's the nature of our society (unfortunately). biggrin.gif

The doctor didn't give me any resistance to running the tests I requested. The only one he couldn't get was the saliva cortisol test, although he did check. He said it may be a US-only test, and simply not available here in Canada. Or perhaps it's just the lab they deal with (directly) doesn't do it. I will wait anxiously for the results, which hopefully won't take too long.

I had a momentary lapse of concentration this morning though, and accidentally took a bite of someone's zuccini bread when offered. I realized what I'd done before swallowing, and promptly, uhh, removed it from my mouth. I don't think any real damage will be done (denial?), but I'm just angry at myself for letting it happen at all. mad.gif

Cheers!

-Geoff.
Gaye of PA
[- it sure would be handy sometimes to have an official diagnosis. And the only time that can reliably happen is before you go gluten free.

Pauliina
[/quote]

Pauliina,
Can you tell me some specific instances of where an official diagnosis would come in handy? I've just received positive blood test results and don't know what to do next, if anything. Thanks!
happygirl
QUOTE (Blitz @ Feb 4 2008, 01:25 PM) *
Well, I just got off the phone with the GI specialist, and the biopsy result was (drumroll please)..... total villious atrophy. I'm glad I did the procedure, as it leaves no doubt as to whether or not I have celiac disease (it's the "gold standard" after all).

Cheers,

-Geoff.


Geoff,

Although I certainly don't wish a "disease" on anyone, I know that you must be relieved to have a rock solid diagnosis, so that you can work on getting better and getting on with life!

Laura
happygirl

Can you tell me some specific instances of where an official diagnosis would come in handy? I've just received positive blood test results and don't know what to do next, if anything. Thanks!
[/quote]

Enrolling in formal research studies for Celiac. At this point, all of the studies that I am aware of require you to be a biopsy-proven Celiac.

Knowing 100% that you have Celiac.

Having the diagnosis may make it easier to stick to the diet.

Having the diagnosis may make it easier for you/your doctor to order follow up tests.

Not having to deal with (some) doctors down the road who will (undoubtedly) question your diagnosis, because you don't have the biopsy. They may push for you to do a gluten challenge and do the biopsy. Certainly much easier to do the biopsy at first then decide you want it later.

Documenting the level of damage from the beginning, so that you know if you are improving (on follow up tests/procedures).
Lizz7711
QUOTE (Blitz @ Feb 10 2008, 01:35 AM) *
Liz, as I said before, no worries about that. I know people are busy, it's the nature of our society (unfortunately). biggrin.gif

The doctor didn't give me any resistance to running the tests I requested. The only one he couldn't get was the saliva cortisol test, although he did check. He said it may be a US-only test, and simply not available here in Canada. Or perhaps it's just the lab they deal with (directly) doesn't do it. I will wait anxiously for the results, which hopefully won't take too long.

I had a momentary lapse of concentration this morning though, and accidentally took a bite of someone's zuccini bread when offered. I realized what I'd done before swallowing, and promptly, uhh, removed it from my mouth. I don't think any real damage will be done (denial?), but I'm just angry at myself for letting it happen at all. mad.gif

Cheers!

-Geoff.


Hi Geoff,
Hope you're feeling ok after your accidental exposure! I think because my reactions are more autoimmune and I don't have the malabsorption so perhaps less intestinal damage...my reactions to accidental gluten are not easily noticed by me...in a way I wish i'd have a stronger reaction to help keep me diligent. I'm very strict, but probably less so about eating at restaurants and the whole cross-contamination issue than others who feels the effects right away. It's still damaging my body, but I don't know it!

For the saliva cortisol test, you can order it through "Canary Club"...I think the link is on that thryoid madness website, or you might be able to google it...I don't see why you couldn't order it from Canada...cost about $140/not covered by insurance.

Let us know the lab results! take care,
Liz rolleyes.gif
Blitz
Bump. Well, just to update, I got my Doctor to run a bunch of the tests as recommended on StopTheThyroidMadness.com a few weeks back. And just yesterday I got a call from his office saying that he wanted to see me to discuss the results. I managed to make an appointment for tomorrow evening, which is good because he's away for 2.5 wks after that, and I don't know if I could stand the wait.

I've been on the gluten-free diet for just over four weeks now, and so far I haven't felt any change in the chronic fatigue. And now that we know there's something up with either my thyroid or adrenals, it's becoming clearer why.

So, although it may sound a bit odd, I'm anxiously looking forward to this doctor's visit.

Cheers!

Geoff.
Lizz7711
QUOTE (Blitz @ Feb 20 2008, 10:34 PM) *
Bump. Well, just to update, I got my Doctor to run a bunch of the tests as recommended on StopTheThyroidMadness.com a few weeks back. And just yesterday I got a call from his office saying that he wanted to see me to discuss the results. I managed to make an appointment for tomorrow evening, which is good because he's away for 2.5 wks after that, and I don't know if I could stand the wait.

I've been on the gluten-free diet for just over four weeks now, and so far I haven't felt any change in the chronic fatigue. And now that we know there's something up with either my thyroid or adrenals, it's becoming clearer why.

So, although it may sound a bit odd, I'm anxiously looking forward to this doctor's visit.

Cheers!

Geoff.


Hi Geoff,

now i'm anxious to know! Keep us posted...can't remember if I told you and don't feel like scanning all the other posts...but if he agrees your adrenals need help (which i'd be surprised if he actually does since most docs know next to nothing about it, but maybe they are enlighted up there in Toronto tongue.gif ), ask for Cortef--it's very low physiologic dose hydrocortisone--zero side effects because it's just to replace the cortisol your adrenals should be making themselves in a day--you take it 4 times a day (big pain, but when you feel better believe me you will make sure to take it!--I used to feel tired just folding laundry, and now fatigue is a non-issue) as it works with your circadian rhythm of the adrenals.
Anyway, good luck!
Liz
Blitz
QUOTE (Lizz7711 @ Feb 21 2008, 10:15 AM) *
now i'm anxious to know! Keep us posted...can't remember if I told you and don't feel like scanning all the other posts...but if he agrees your adrenals need help (which i'd be surprised if he actually does since most docs know next to nothing about it, but maybe they are enlighted up there in Toronto tongue.gif ), ask for Cortef--it's very low physiologic dose hydrocortisone--zero side effects because it's just to replace the cortisol your adrenals should be making themselves in a day--you take it 4 times a day (big pain, but when you feel better believe me you will make sure to take it!--I used to feel tired just folding laundry, and now fatigue is a non-issue) as it works with your circadian rhythm of the adrenals.


Hi Liz,

I will certainly post the results. Perhaps the docs up here are more enlightened than elsewhere, but somehow I doubt it. tongue.gif Thanks for the info on Cortef, I will ask him about that for sure.

Cheers!

Geoff.


Lizz7711
QUOTE (Blitz @ Feb 21 2008, 11:12 AM) *
Hi Liz,

I will certainly post the results. Perhaps the docs up here are more enlightened than elsewhere, but somehow I doubt it. tongue.gif Thanks for the info on Cortef, I will ask him about that for sure.

Cheers!

Geoff.


Hi Geoff,

What's the news?? Hope all is well,
Liz
Blitz
QUOTE (Lizz7711 @ Feb 26 2008, 03:41 PM) *
Hi Geoff,

What's the news?? Hope all is well,
Liz


Hi Liz,

Sorry for the delay, got tied up with some family stuff (got two members currently in hospital - and not the same one either).

I was a bit disappointed with the results, as nothing conclusive showed up (according to my doc's diagnosis). I've included the complete test results below, although I honestly don't know what many of them are (I'll google for them when I get a chance). I've put the "normal" range in brackets, and bolded any that were out of that range.

* B12 - 266 (>110)
* Ferritin - 27 (41-300)
* TSH - 2.00 (0.35-5.00)
* T4 Free - 12 (10-20)
* Free T3 - 3.8 (2.6-5.70)
* LH - 2 (1 - 9.00)
* Cortisol 1600-2000h - 229 (65-340)
* DHEAS - 10.3 (2.6-7.70)
* Testosterone - 21.5 (8.0-38.0)
* Progesterone - 0.8 (<1.99)
* Estradiol - 74 (<160.99)
* Hb - 159 (135-170)
* Hct - 0.46 (0.38-0.490)
* RBC - 5.14 (4.2-5.70)
* MCV - 89.5 (80-97.0)
* MCH - 30.9 (27-32.0)
* MCHC - 345 (320-360)
* Random Dist. Width - 12.8 (11.5-15.5)
* WBC - 5.5 (4-11.0)
* Platelets - 239 (145-400)
* MPV - 7.7 (7.4-11.3)
* Differential WBC's:
--> Neutrophils (A) - 3.52 (1.80-7.00)
--> Lymphocytes (A) - 1.32 (1.00-3.20)
--> Monocytes (A) - 0.50 (0-0.80)
--> Eosinophils (A) - 0.17 (0-0.40)
--> Basophils (A) - 0 (0-0.20)

* Free Testosterone - 43.2 (31.0-94.0)
* Anti-Thyroid Peroxidase - POS (NEG)
* Anty-Thyroglobulin - NEG (NEG)

The doctor said my ferritin levels will come up once the damage to my intestines recovers, but that it may take some time for that to happen.

I guess I was hoping for either the thyroid or adrenals to show something, so that I could start feeling better sooner. All this waiting for improvement is agonizing, and to date there really hasn't been any (in fact, this week I feel pretty crummy).

Thanks for all your help!

-Geoff.
aikiducky
One thing that struck me was that even though your B12 was normal it wasn't very high. It might help to take a supplement if you aren't already. Many people experience symptoms of low B12 way before their levels drop to what doctors consider too low I've noticed reading the boards.

Pauliina
Blitz
QUOTE (aikiducky @ Feb 28 2008, 06:07 AM) *
One thing that struck me was that even though your B12 was normal it wasn't very high. It might help to take a supplement if you aren't already. Many people experience symptoms of low B12 way before their levels drop to what doctors consider too low I've noticed reading the boards.


Hi Paulina,

Thanks for your input. I have no experience in this regard, so just wondering if you could expand on what you consider normal and high B12 levels.

On a related note, I asked both my pharmacist and doctor about where/how to get sublingual B12 tablets, and both looked at me like I had three heads. So, apparently these are either (i) a big secret, (ii) not available in Canada, (iii) both my pharma and doc are living in the 1800's, or (iv) all of the above. wink.gif The reason I was looking for the sublingual variety is that I've read the absorption ratio of them is significantly higher than the kind you swallow, and almost as good as the shots.

Also, I've been considering taking iron supplements, as my ferritin levels were low. But I'm questioning this wisdom of this, because obviously my system isn't currently able to absorb whatever iron I'm ingesting as it is. My figuring says that simply ingesting more, in the form of tablets, won't necessarily help.

Cheers!

-Geoff.
Lizz7711
Hi Geoff,

I posted your lab results on a adrenal/thyroid forum (don't worry, just the numbers no other info) and here are the two answers I got:

"Well, his B-12, Ferritin, FT4, and FT3 are all low. B-12 should optimally be
close to 1000, Ferritin (iron) should be at least 40-70. And the Free T4 and
T3 are both low, so he needs more thyroid. I don't know much about the sex
hormones yet. The cortisol level would depend on the time of day. It would
be very helpful if he got a 24 hour salvia cortisol test done to check for
adrenal fatiuge. He definately needs to get that B-12 and iron level up
though as low levels of these can interefere with thyroid dosing.
Rie"

"HIs Ferritin is very low as men need it even higher than women and women
need it ot be 70-90. HIs testosteroine is in the DIRT. For men this is
VERY important even more so than women and his htyroid is veyr low and
he has Hashi's. Possibluy should do the cortilsl saliva testing to find
out about adrenals."
--
Valerie Taylor Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/
http://health.groups.yahoo.com/group/Natur...rmonesADRENALS/

The link to that group is above, and the second response was from the woman who created the stopthethyroidmadness website. It's a super busy forum and she moderates it so usually gives pretty short answers (with tons of typos, lol). Anyway, they are pretty knowledgable, so it might be worth going on the forum to ask some questions.

It's true that you do need to heal before your body will absorb as it should, but that doens't mean you shouldn't take extra iron and B12 because your body will absorb SOME, and you want those levels to rise. For the iron, they recommend taking 200mg of either ferrous gluconate or bis-glycinate, there are a couple others that absorb well but I'll have to find the names. I've been taking the bis-glycinate form and have had no problems with constipation. If you take iron with 1000mg vitamin C it will absorb better. Do not take iron anywhere near taking calcium as it will interfere with that absorption. By the way, you should definitely make sure to get extra calcium becuase your bones are probably depleted somehwat due to the malabsorption as well...maybe you can ask for a DEXA scan of your bone density. They can't tell that from a blood test becasue your body will always maintain the serum level necessary. Hypothyroid can also be a cause of low iron by the way. But treating hypothyroid before your iron levels go up is not a good idea.

You CAN at least support your adrenals even if you do not go on Cortef (I really recommend the saliva testing, and if you test poorly, beg the doc for Cortef). To support adrenals you want (this was from my doctor): vitamin B5 1-2 g/day; B6 400mg/day; vitamin A (not betacarotene) 15-20000IU/day; Chromium 1 g/3xperday. You also want to take 3000mg of vitamin C (you can do it in 3- 1000 mg doses with your iron at meal time). There are other things like ashwaganda and rhodiola that help as well.

The best B12 is in the methylcobalamin form as this needs no conversion in the body and will be best absorbed, and yes you do want sublingual. But it's hard to find sublingual methylcobalamin. The brand I find at health food stores here is made by the company "Enzymatic"--you can take 1000-3000 mcg per day. Even better would be weekly injections of methyl B12 if you can find a holistic doctor up there! But if you can't find the B12 at the store, i'm sure you can order it online.

I can't say enough that underlying everything are burnt out adrenals and if they don't get some attention, nothing else will take as well and the healing will take that much longer and the fatigue will not go away as quickly. Also, when you do the adrenal saliva testing, they look at all the other hormones.

HOpe this helps, if you ever want to just email me direct feel free: Lizz7711@yahoo.com

Liz smile.gif



QUOTE (Blitz @ Feb 28 2008, 12:21 AM) *
Hi Liz,

Sorry for the delay, got tied up with some family stuff (got two members currently in hospital - and not the same one either).

I was a bit disappointed with the results, as nothing conclusive showed up (according to my doc's diagnosis). I've included the complete test results below, although I honestly don't know what many of them are (I'll google for them when I get a chance). I've put the "normal" range in brackets, and bolded any that were out of that range.

* B12 - 266 (>110)
* Ferritin - 27 (41-300)
* TSH - 2.00 (0.35-5.00)
* T4 Free - 12 (10-20)
* Free T3 - 3.8 (2.6-5.70)
* LH - 2 (1 - 9.00)
* Cortisol 1600-2000h - 229 (65-340)
* DHEAS - 10.3 (2.6-7.70)
* Testosterone - 21.5 (8.0-38.0)
* Progesterone - 0.8 (<1.99)
* Estradiol - 74 (<160.99)
* Hb - 159 (135-170)
* Hct - 0.46 (0.38-0.490)
* RBC - 5.14 (4.2-5.70)
* MCV - 89.5 (80-97.0)
* MCH - 30.9 (27-32.0)
* MCHC - 345 (320-360)
* Random Dist. Width - 12.8 (11.5-15.5)
* WBC - 5.5 (4-11.0)
* Platelets - 239 (145-400)
* MPV - 7.7 (7.4-11.3)
* Differential WBC's:
--> Neutrophils (A) - 3.52 (1.80-7.00)
--> Lymphocytes (A) - 1.32 (1.00-3.20)
--> Monocytes (A) - 0.50 (0-0.80)
--> Eosinophils (A) - 0.17 (0-0.40)
--> Basophils (A) - 0 (0-0.20)

* Free Testosterone - 43.2 (31.0-94.0)
* Anti-Thyroid Peroxidase - POS (NEG)
* Anty-Thyroglobulin - NEG (NEG)

The doctor said my ferritin levels will come up once the damage to my intestines recovers, but that it may take some time for that to happen.

I guess I was hoping for either the thyroid or adrenals to show something, so that I could start feeling better sooner. All this waiting for improvement is agonizing, and to date there really hasn't been any (in fact, this week I feel pretty crummy).

Thanks for all your help!

-Geoff.

Blitz
Hi Liz,

Thanks for all the info. I don't have time to sift through it all at the moment (it's 2:30am), but I will surely do that when I get a chance. My doc is away for another week and a half, but I'll be sure to follow up with him upon his return... possibly including some begging and whatnot.

Thanks again, and cheers!

-Geoff.


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