heyas!
i was diagnosed celiac in october.
and have since been off the gluten.
and while i haven't had as many
stomach aches since then,
i still have the fatigue, nausea, etc.
so, it hasn't gotten SO much better.
i have been reading a lot
about OTHER allergies
online and
about how maybe giving up
gluten isn't THE 100% answer.
ugh. REALLY??
dairy, soy, casien, etc...
vERY daunting.
and there is part of
me that is a bit of a skeptic
about all these other
allergies --
*i feel like, WHY wouldn't my DOCTOR
have mentioned this to me!????*
feel like i was diagnosed then
just sent out into the gluten free world
by my doctor...
i am beginning to wonder...
maybe there IS something else.
i just dont think i FEEL as good as
i should, you know??
so...how do i find out???
is there a test?
should i go to an allergist??
i hear about this enterolab -
is that REALLY a legit thing?
could my dr. just test me?
i asked my dr and she said
to just go off dairy for a week
and see if i feel better.
i felt the same.
and it was HARD!
anyhoo...
forgive me for my skepticism...
let me know your thoughts.
First of all, its good to have a starting place of going gluten free, as a way to improve your health!
Doctors really do just set you loose with a dx and not give you any support. Some people have had help from a dietician, other find the dietitians dont know much either. Furthermore, even finding a doctor to recognize and test you for celiac, puts you ahead of many on this board who were sick for a long time without anyone suggesting celiac. however, doctors have certain limitations, and most of them are more about identifying and curing diseases than about optimal health! They may not be interested in additional testing, and they may even believe some of the testing and other issues discussed on these boards are nonsense.
There are a few things that could still be bothering you. First of all, are you really gluten free? Are you still using your old toaster and cutting board? It took me a long time to admit i had to avoid cereals with malt flavoring. Are you eating out? You realize that beer has gluten, most soy sauce has gluten, etc?
Depending on how long you've been sick, it can take a long time for your gut to really heal. Sometimes additional supplements can help - start with a multivitimin and some probiotics. Did your doctor test you for anemia, which can often be a side affect of celiac?
as for the tests, people on these boards rave about the enterolab test. Before i came here, I had found a test called A.L.C.A.T (if you spell it without the dots, the text gets altered.. .) Its a blood test, and I paid for it out of pocket (i think its almost unheard of for insurance to cover it). They tested me for 175 foods, and I reacted to almost a third of them!! So while avoiding dairy can be hard, i'm now off of gluten, dairy, rice, onions, hot peppers, beef and pork, peas, thyme . . . ugg! The thing is, the tests like the A.L.C.A.T have a lot of 'false positives' - so i'm off all these foods, and then i'll start introducing them back in
Even allergists or people who specailize in this kind of testing will tell you that the diet test is still the 'gold standard'. The best way to really know if a food is bothering you, is to avoid it for several weeks, and then eat it every day, and see how you feel.
I know its really hard to make this kind of change in your life - but pick up a good gluten-free cookbook, make some gluten-free cookie dough, and cheer up!
Doctors really do just set you loose with a dx and not give you any support. Some people have had help from a dietician, other find the dietitians dont know much either. Furthermore, even finding a doctor to recognize and test you for celiac, puts you ahead of many on this board who were sick for a long time without anyone suggesting celiac. however, doctors have certain limitations, and most of them are more about identifying and curing diseases than about optimal health! They may not be interested in additional testing, and they may even believe some of the testing and other issues discussed on these boards are nonsense.
There are a few things that could still be bothering you. First of all, are you really gluten free? Are you still using your old toaster and cutting board? It took me a long time to admit i had to avoid cereals with malt flavoring. Are you eating out? You realize that beer has gluten, most soy sauce has gluten, etc?
Depending on how long you've been sick, it can take a long time for your gut to really heal. Sometimes additional supplements can help - start with a multivitimin and some probiotics. Did your doctor test you for anemia, which can often be a side affect of celiac?
as for the tests, people on these boards rave about the enterolab test. Before i came here, I had found a test called A.L.C.A.T (if you spell it without the dots, the text gets altered.. .) Its a blood test, and I paid for it out of pocket (i think its almost unheard of for insurance to cover it). They tested me for 175 foods, and I reacted to almost a third of them!! So while avoiding dairy can be hard, i'm now off of gluten, dairy, rice, onions, hot peppers, beef and pork, peas, thyme . . . ugg! The thing is, the tests like the A.L.C.A.T have a lot of 'false positives' - so i'm off all these foods, and then i'll start introducing them back in
Even allergists or people who specailize in this kind of testing will tell you that the diet test is still the 'gold standard'. The best way to really know if a food is bothering you, is to avoid it for several weeks, and then eat it every day, and see how you feel.
I know its really hard to make this kind of change in your life - but pick up a good gluten-free cookbook, make some gluten-free cookie dough, and cheer up!
Well, while the other allergies are certainly a possibility, don't overlook nutrient deficiencies. That was one thing I hadn't taken seriously for awhile, and I paid for it big time. I had unmanageable fatigue (and much more) until I started a few supplements. The two which seemed to help me the most are magnesium and B12. But we're all different, and I'm sure others will have additional suggestions for you.
As for the difficulties of giving up foods, many of us seem to find that necessary, at least for while, until the gut heals up enough. I basically had to give up nearly all the things I used to eat. Besides gluten, I've also had to give up all sugar, yeast, dairy, egg, meats, and nightshades. More recently, a number of other items are not so friendly to my gut, and are either very limited or off limits for the time being.
However, there is still a lot of stuff I can eat, so it isn't as bad as it might seem when you are accustomed to the typical American diet. So once you widen your view to include some new foods, it's like a whole new world opens up in terms of food, and the variety you can enjoy.
So I'd suggest cutting out dairy for awhile, and see how it goes. Try not to dig into replacements like soy and so forth, until you know how you are doing. You wouldn't want to trade one reaction for another. Then of course the supplements, which seem to be almost a given for most if not all of us.
That's my two cents. I'm sure others will offer some great assistance.
Hope you get the answers you need!
As for the difficulties of giving up foods, many of us seem to find that necessary, at least for while, until the gut heals up enough. I basically had to give up nearly all the things I used to eat. Besides gluten, I've also had to give up all sugar, yeast, dairy, egg, meats, and nightshades. More recently, a number of other items are not so friendly to my gut, and are either very limited or off limits for the time being.
However, there is still a lot of stuff I can eat, so it isn't as bad as it might seem when you are accustomed to the typical American diet. So once you widen your view to include some new foods, it's like a whole new world opens up in terms of food, and the variety you can enjoy.
So I'd suggest cutting out dairy for awhile, and see how it goes. Try not to dig into replacements like soy and so forth, until you know how you are doing. You wouldn't want to trade one reaction for another. Then of course the supplements, which seem to be almost a given for most if not all of us.
That's my two cents. I'm sure others will offer some great assistance.
Hope you get the answers you need!
QUOTE (i_miss_cookie*dough @ Feb 4 2008, 11:55 PM) 
i asked my dr and she said
to just go off dairy for a week
and see if i feel better.
to just go off dairy for a week
and see if i feel better.
Saddens me to hear of Dr.s saying one week is enough.
It wasn't until my 3rd or 4th test of soy that I decided to go longer and it wasn't until day12 or so that I realized I'd REALLY found an answer.
Had I stopped at one week I'd absolutely STILL be ******g miserable just about every hour of every day.
As it was, I felt like I got my life back.
(All of this was after 3.5 yrs gluten-free & yrs dairy-free & sugar/sweetener-free)