I really need some help here......

I am currently seeing a naturopath and an MD that practices holistic medicine. One is telling me that my gut can be healed and eventually I can ingest gluten again (naturopath) and the other is telling me after staying off gluten for 6 months, I can then ingest, but only once a week for life - if I can tolerate (holistic MD). Which is true? At this point, I have not been diagnosed with Celiac.

Testing I've had done specific to gluten issues:

gliadin AB, SIgA (saliva): 34 (range: positive if >15 U/ml *high* [Diagnos-Techs]
food sensitivity IgG & IgE (blood): low for "wheat" gluten & "wheat" gliadin [US Bio Tek]
Gliadin IGG (blood): 59.5 (equivocal: 25.1-49.9) *high* [Mayo Clinic]
Gliadin IGA (blood): 28.2 (equivocal: 25.1-49.9) [Mayo Clinic]
Enodmysial AB: negative [Mayo Clinic]
Reticulin ABS: negative [Mayo Clinic]

(I did ingest gluten for a few months before having the Enodmysial, Reticulin, IGG & IGA (blood) test.)

How can I show positive for gliadin on a saliva and blood test, but not show positive for wheat gluten or wheat gliadin on the food sensitivity test? That baffles me!

I would really like to know if I must remain gluten free for life or not. If anyone can help me with this I would greatly appreciate it.

Also, what occurs in the body when one is gluten intolerant and ingests gluten? Any web sites/links you could post?

Thank you for your time!

I don't understand the bloodwork, I'm still learning. But this is what I understand...

If you have a Wheat allergy, this may get better.
If you have some gluten intolerance, you may be able to eat small amounts and tolerate them. I stand corrected.... the girls below know much more than me.
If you have Celiac Disease, there is no acceptable amount of gluten to eat. The smallest amounts can still damage your intestines.

This site has massive amounts of infromation. Take a deep breath, and just start reading. Try not to get overwhelmed. This diet is doable.

Given the IgG responses, I'd say that you are at least gluten intolerant - for life. They didn't run a tTg, so it's hard to guess at damage - and hence a celiac diagnosis.

Let me state this upfront, I do not deal with numbers.

But you need to get some new doctors. They have now right to give you that source of information. Both are seriously misinformed.

If in fact you have Celiac, it is forever, It is a lifetime commitment. Yes, the gut can be heal, but only with a complete commitment to a gluten free diet.

Both of your recommendations have no clue.

You will get more answers here. Glad that you have joined us.

I'm afraid Lisa (MommaGoose) is right. Once you become intolerant to gluten, you can never go back to eating it. There's more going on than just what's happening in the gut. Celiac or intolerant. Maybe there's less intestinal damage being done if you're "only" intolerant, but there's also other problems that you probably aren't aware are gluten related. And you'll not be able to resolve these other issues if you're still eating gluten.

I'll give you an example about myself. The GI issues were slow to clear up, but I did notice a lightening of my spirits and eventually I came out of a funk I had been in for I don't know how many years - probably 30 or more. I can say that I now know what it is to be happy. Something that never happened to me while eating gluten. Also, just this week, after being gluten-free for nearly a year, I noticed the exzema on my face has disappeared.

Some people who post on this forum regularly, who are "only" gluten intolerant, had serious psycological issues - depression, anxiety - for which they were on many meds. After going gluten-free they found that these things improved and they were able to go off the meds. It was gluten all the time, but no one knew that.

If you choose to begin eating gluten-free, take the diet seriuosly and go 100% gluten-free - no eating gluten once a week, or even once a month. I'm sure you'll be glad you did.

And, yes, you'll learn more here than from anyother source, especially doctors who really aren't that well informed.

Eleven years ago I was told to avoid wheat and that I should "watch" gluten. The test I had done showed off the chart numbers for wheat gluten, gliadin, rye, barley and oats, but the doctor crossed those out and said I really just needed to avoid wheat, that so many people had high scores on those that he thought they were false positives.

I was told that if I avoided wheat for several years that I'd be able to add it back in once my gut healed. I stayed "mostly" gluten-free for about 7 years and had a dramatic improvement in my health, although I noticed that I would sometimes get stomach aches that I couldn't figure out. (I now know that it was things like barley malt that I didn't think I had to avoid.) I decided to add spelt, since I'd heard it was low in gluten and that many people who were allergic to wheat could have it. Big mistake. I started having GI problems again and developed an autoimmune kidney disease. After going gluten-free (and taking some nasty medications) I regained my good health, kidney disease in remission for just over 3 years now. I learned a bit more about hidden glutens and have been fanatically gluten-free for about 1-1/2 years now.

I don't have Celiac. I can't have it because I don't have the correct genes. I'm only gluten intolerant for whatever reason. BUT I CAN'T HAVE GLUTEN EVER AGAIN, NO MATTER WHAT ANY DOCTOR OR ANYONE ELSE TELLS ME.

My guess would be that if you are gluten intolerant it's for life. But take it from me - it's worth it. I wouldn't trade my good health for all the Krispy Kreme's in the world.

Everyone in this thread that said stay away from gluten , for life is correct. I am guessing that these docs are confused by:

The so called CODEX standard that implies "very low gluten" is good enough (unless its been updated?)

OR

The fact that different people react to different levels of gluten in different ways because they are different. Some one with celiac disease or gluten intolerance, or what ever label is given CAN eat gluten with NO SYMPTONS occasionally. Unfortunitly this does NOT mean no damage is done, just that they did not have out ward symptoms that time.

OR

(this is what I suspect) This docs in question worship at the church of the great FDA pyramid and can not imagine a life not based on the most holy of all whole grains... WHEAT.. so they figure that once a weak will limit any damage to a healable / acceptable amount and allow you to consume the greatest of all the worlds food.. WONDER BREAD! (yes you did detect the ever so slightest amount of sarcasm in that...)

Thank you ALL for your responses. It helps having others share their experiences & knowledge. I love forums for that reason! Anyway, "knowing" it's a lifelong thing helps me right now.

I know I felt better being completely off gluten for months after finding out I had a problem with it so I guess it will be encouraging to see how I feel after more time goes by this time (I'm off gluten again since tests are over). I mean, I didn't feel great when I was off it before because I have other issues being dealt with too, like: high mercury/lead levels, leaky gut etc.), but some of my symptoms seemed to improve.

By the way, does anyone have any web sites/links suggestions that is soley about gluten "intolerance" and how that affects the body? I know the "treatment" is the same for GI and Celiacs, but gluten does affect the body differently in each case. I know symptoms can be the same, but the damage in the body is apparently different. I don't think a person who is only gluten intolerant has flatten villi. I would like to know what does happen in the body then. Seems like I read somewhere that there can be damage to internal organs etc. I read the book Dngerous Grains which is good, but I'd like more info. Thanks to anyone who can help me. I want to know as much as I possibly can re: what I am dealing with.

Oh, one more question: has anyone here who is gluten intolerant only been to a "celiac" support group and found it to be helpful? I'm considering this for myself. Not sure we have a gluten intolerance support group. Heard those are hard to come by anyway.

Thank you and God Bless!

I am very grateful to everyone on this thread. It's been extremely helpful to me as I am in the same place, dealing with other health issues also (interstitial cystitis). I'll learn to become a "regular" on these message boards!

Thanks again.

Although I had negative bloodwork, I went gluten free anyways. I had so much improvement even in the first couple weeks that my family doctor said to stay gluten free for 3 months. It'sl been 6 months now for me. I know that I can't go back to gluten. If I even get a trace of it I know now. I have a little sister that was diagnosed at a year. In her teenage years, my family thought she was in "remission" because she seemed to tolerate it. She was anemic as a teenager. I'm sure the gluten didn't help. She now has persnickity anemia, fibromyalgia, rhemuatoid arthritis and thyroid. I'm sure that maybe these things could have been avoided if she remained gluten free. She is 7 years younger than I am. I do have asthma and thyroid. I'm hoping to avoid any other problems myself. I just wish it had been figured out sooner for me.

I am still learning as well, but pretty sure Daughter and I are gluten intolerant. I have many of the same symptoms of celiac and this forum has helped me so much. I don't know much about the differences yet. I am very skeptical of doctors now, but my naturalpath is very good and seems to know the most. he told me that gluten intolerance causes intestines to become inflamed and leads to basically all the same problems as celiac because inflamed intestines cannot absorb nutrients effectively. But I think there is still a big debate about the difference between the two. But I've noticed that my symptoms clear up faster after gluttening than most people with celiac say theirs does. It would make sense if my doc is right. Good luck with the research.

I wouldn't worry about the past. There is no published scientific evidence to suggest that being gluten free would have entirely prevented either your other diseases or hers. Perhaps *delayed* them, but not prevented them entirely.

All of those diseases are genetically related, beyond that, nothing more can be drawn at this point. It is likely they all have different triggers.

Asthma is an inflammatory state that is basically the "leaky gut" of lung tissue. People with the genetics for a leaky gut and/or "leaky lungs" often have allergies, asthma, and autoimmune diseases. It's not unheard of for these all to cluster. Some researchers consider asthma to be an autoimmune disease.

Basically, you (and your sister) have an over-reactive immune system, a lack of regulatory T-cells and/or a misguided immune system, and "leaky" points of entry for increased exposure to poossible triggers. The cause of autoimmunity is thought to be genetic disposition and an environmental trigger such as a virus. Exposure to dietary proteins like gluten *may* cause these diseases to appear sooner, but gluten itself is NOT the cause. Children on the strict gluten-free diet *still* go on to develop other autoimmune diseases as well. For some reason people seem to forget this. Gluten *may* play a role, but the gluten free diet is only part of the puzzle.

Gluten is what damaged your gut to start with so if your gut heals and you start eating gluten again, you'll be right back where you are now. I think of gluten intolerance as the first stage on the road to getting celiaa. Think of yourself as lucky - at this point you're "only" gluten intolerant and you haven't damaged your gut enough to have full-blown celiac. If you continued to eat gluten for a few more years, you likely would be diagnosed with celiac and have a lot more damage.

OK, I have to jump in here. Maybe I'm missing something...

I do agree with kbtoyssni in that gluten intolerance can often become celiac down the road. And I also agree you can have all the same symptoms as a person with diagnosed celiac disease even without the villous atrophy.

My concern after reading all the posts is DACAT, how do you know you do NOT have celiac disease? From what I read you have only been tested for Gliadin antibodies. The ema and reticulin have been known to come back negative in 60% of people with DIAGNOSED celiac!

You may want to consider asking for the TTg antibody (tissue transglutaminase) and a total IgA level. Your Gliadin IgG is high in both blood and saliva, yet your gliadin IgA was in the normal range. I would not rule out a diagnosis of celiac just yet. Especially since you mentioned "leaky gut"

I would talk this over with your doctor before staying gluten free any longer. Also, there are many seronegative celiacs out there, who test negative for the TTg Iga and still go on to show signs of damage on the endoscopy. The IgA levels are indicators of the amount of damage that's been done, so if you only have partial villous atrophy at this point, or only the intraepithelial lymphocytes (IEL) your blood tests could still come out negative.

One last point, the celiac genes they test for are the DQ2 and DQ8. It has also been shown that people with DQ1 can develope celiac, but their symptoms are often more outside the gut (ie neurological, dermatitis herpetiformis, etc). Just because you didn't test positive for DQ2 or DQ8 doesn't mean you will never develop celiac.

Hi. I have come to believe that gluten is not a good thing.

If you are intolerant and your symptoms clear up gluten free you have your answer. Whether or not you have celiac you would be gluten free for life.

There is a small chance that something else could be causing the gluten sensitivity BUT I still don't think gluten is good for you. If your symptoms don't resolve then you need to dig deeper. If something else is causing the intolerance then I'd still suggest gluten free, you just wouldn't have to be as careful with cross contamination.

I have a book called Dangerous Grains that list gluten free as helping with symptoms of 150 different diseases.

Celiacs and the gluten intolerant share a common "enemy" and we have people at our group that weren't biopsy diagnosed or have been diagnosed as gluten intolerant or even just have a wheat allergy.

Have you checked the list on this website for a local group?
List of Local Celiac Disease Support Groups/Chapters

After spending a little over a year on this board and reading many people's responses - some scientific, most just relating experiences, it is my personal opinion that all who react to gluten are Gluten Intolerant, even though there are many contributing factors that result in this condition.

Those who have been diagnosed with villi damage (with the associated malabsorbtion issues) or DH and/or have certain genes are labeled as Celiac. Those without intestinal damage, no detectible malabsorbtion and certain other genes are labeled Gluten Intolerant. Both conditions can contribute to other autoimmune diseases and/or neurological and psychological problems. Each individual's body handles gluten in a different way with varying results.

I feel fairly certain that after some more years of research that it will all be listed under the same condition with subclassifications. However, whatever the label, the treatment for all is the same - gluten-free for life.

So here is my input for something a little different... I have a wheat allergy. It has been "medically confirmed" that i do not have celiac. But I post on this board & talk to some people in the Dallas Area celiac group as they are much more in tune with my experiences than others you will find on general allergy boards.

That being said, I have no different a view on gluten than anyone else here does. Just b/c you have no seen symptoms does not mean you are not doing harm to your body. Even if my allergy magically "goes away" (which hardly seems possible) I will continue to not eat wheat. IMO once gluten intolerant, always gluten intolerant. Wheat & grains are not all they are cracked up to be. It is very tough @ first & I still have moments of weakness but in the end I feel like an entirely new person now that I am gluten-free. And I would like to stay that person too!

I would strongly recommend committing to the diet. Here's what happened to my grandmother:

She was diagnosed with some kind of wheat problem in her 20s, just like me. This was the 1940s, so the tests weren't advanced enough to distinguish between celiac, non-celiac gluten intolerance, etc. She went on a strict diet for a few years. They told her she grew out of it because he insides did heal. At that time I'm sure they thought she did grow out of it. By the time she died at 85, she had about half the problems listed in books about untreated celiac disease, including diabetes (and eventually carpal tunnels), one autoimmune disease (scleroderma), arthritis from a young age, trouble conceiving and keeping babies, and eventually liver failure from a lifetime of all the drugs needed to compensate for her various conditions.

I'm leaving out a lot of things on the list because I can't find it right now. My point is that I have no trouble keeping to the diet after seeing what 85 years of eating gluten can do to a person who shouldn't have gluten.

I'm gluten intolerant (non-Celiac). At this point I have no reason to believe that this is indeed a life-long situation for me.

I'm working with some great Dr.'s and its definately possible for some people to lose this intolerance with treatment of underlying issues and healing.

Everyone is different...I'm told I will have to wait until I'm well to determine whether or not gluten will continue to be a problem for me.

For now...I am being treated for the things which have led to the gluten intolerance in the first place.

If I chose not to address these underlying issues...then YES...I most certainly would need to avoid gluten for life. It would be a life-long situation because the circumstances which have caused my body to no longer tolerate gluten (as well as a long list of other foods) would remain unchanged.

I dont think its accurate to state that ALL cases of non-celiac gluten intolerance require life-long dietary restrictions. It really depends on the actual *cause* of the individual's gluten intolerance. If its not Celiac...then what is it??

There are many *treatable* conditions that can lead to a gluten intolerance.

If some people are not looking into underlying issues that may be contributing....they *may* remain at risk for many of the same conditions they are trying avoid by not consuming gluten.

Alot of those who have non-celiac gluten intolerance are not well even while following the diet...this is a good reason to dig a little deeper for answers.

Yes, I agree with Rachel 100%. In fact, I am an example of it.

People like Munchkinette's grandmother are undiagnosed celiacs and need a lifetime of eating gluten-free.

However, my own gluten intolerance, which was very severe, I was sensitive to even the smallest crumb, is completely gone! I have Lyme Disease and had heavy metal toxcity. With both of those being treated, my intolerance to gluten has now gone away completely.

It has taken a couple months for me to be sure, but I am sure, it is gone.

I was one of those who got sicker when I ate gluten or got any kind of contamination, but never got completely well on a gluten-free diet. I tried cutting out soy, corn and dairy for 6 months as well, but no improvement over the intitial improvement I had upon starting to eat gluten-free.

I am not implying that everyone who is non-celiac gluten intolerant will get better and be able to eat gluten again. I think some people truly have gluten problems and have negative celiac tests. Obviously there is much to be learned about this.

I also find it interesting that the ONLY sensitivity to food I had was to gluten. This happened to my daughter as well. Once her Lyme and heavy metals were treated, she was no longer sensitive to gluten at all. This is the same daughter who was begging to end a gluten challenge after only three days back in December.

For those who are curious, my Enterolab score was IgA 60. I also was over 30 on my casein score, but never had any changes dairy-free for six months. I was obviously having a very strong immune reaction, but I think that was from my leaky gut and my overactive immune system due to the Lyme Disease. My celiac blood tests were negative and I am negative for celiac genes.

I still eat gluten-free at home because I think it's a healthy lifestyle ... and I mostly eat gluten-free out, but I don't worry about ingredients like I used to. I believe that gluten is not very healthy for many reasons.

Is it possible that those who are gluten intolerant and find that they can eat gluten again don't have the celiac genes DQ2 or DQ8 ?

It would explain why some can eat gluten again and others can't ... And goes along with what someone else said about only people with those genes getting celiac.

I do not have celiac genes.

Yes...Celiac is genetic....so those who do not carry these genes do not necessarily require a life-long gluten-free diet.

If they can identify and resolve what might be causing their gluten intolerance...it may be something that they can overcome with proper treatment.

I do not carry Celiac genes.

My concern is that in saying that EVERY person with gluten intolerance requires a life-long diet.....it may lead them to believe that gluten is the sole cause for their symptoms/suffering....when often there are underlying issues that end up getting ignored.

If other health problems are left undiagnosed....the consequences may be just as damaging as continuing to consume gluten (while intolerant).

Thanks Carla,

Thats what I was wondering. I noticed that Rachel doesn't have the DQ2 or DQ8 gene either.

I'm a DQ2, who was diagnosed a celiac earlier this year by my GI based on an EGD done 17 months post gluten-free which showed damage. It was noted as possible healed celiac.

You know, it'd be just my luck that I'm a celiac who was bitten by a tick ...

Hi Rachel,

We were posting at the same time ..

BTW. Did either of you have problems with gluten as a child ?

There are others of you, too. Anyone can get Lyme Disease.

This is more common than most would ever imagine.

Its not uncommon to have more than one issue going on. Also, since Celiac requires a "trigger"...any type of stress on the body can trigger the genes. Thus many people with Lyme also have Celiac.

I had no health problems until 5 years ago (at age 31).

I was healthy as a child and never had any problems with any foods. I was never sick and I had never experienced sensitivities to environmental allergens, chemicals or foods until 5 years ago. I got hit with it all at once.

All of my sensitivities/symptoms came on after some dental work. I was exposed to more mercury than my body was able to handle and all heck broke loose after that.

I didn't have a gluten problem as a child, though I did have some stomach issues, which run in my family. I'm not talking about anything major, just stomach aches. I was exposed to Lyme when I was 9.

Many of my stomach issues seem to have come from one of the tick-born infections (Bartonella) and from bacterial dysbiosis.

Anytime I had a Lyme flare-up of symptoms, stomach issues were always involved ... in fact, stomach issues always came first before other symptoms, which is why we thought it was celiac, especially when I had such improvement on the gluten-free diet.

I think part of it has to do with the Lyme bacteria attacking the weakest system the most ... with my family history of GI problems, it hit there first.

The reason I was asking about problems as a child is that I was wondering how many DQ2's or DQ8's have nuerological problems without digestive problems early on and if that's a clue that they should avoid gluten for life.

I believe my childhood nuerological problems were from gluten. And if we'd known that I was a DQ2 and I'd avoided gluten, it could have saved me from getting so sick back in 1990.

I'm sorry if you've discussed this somewhere and I missed it, but how do you know your gluten intolerance is from mercury or Lyme ?

I actually had lead toxicity. I tested positive for it in a provoked urine test.

I also had a positive Lyme Western Blot.

I have been diagnosed with Lyme Disease, Babesiosis, Bartonella, heavy metal toxicity, and bacterial dysbiosis.

Once we were treating the Lyme and I chelated the lead, I realized I wasn't getting glutened anymore when we'd eat out. At home, the whole house was gluten-free.

As time went on, I wondered whether my gluten intolerance was caused by the Lyme and metals, but the only way to tell was with a gluten challenge. I thought back and realized any time I had been sick with the Lyme (which was misdiagnosed for over 30 years), I had GI problems. Any time I was not sick with the Lyme, I did not.

I was afraid to do a gluten challenge because I had been so sick prior to cutting out gluten (I am still very sick) and had been losing a lot of weight. Finally, after eating at a buffet, I decided it was a good time to challenge, after all, I was probably already glutened. So I did and no problems. That was back in July. In case you're curious, I ate a piece of angel food cake.

I have challenged several times since then and after a few months of it, I still have no problems. Sometimes I've eaten it a few days in a row. (Most things I've tried are not nearly as good as I remember, particularly pizza and anything with a bun).

I am still very sick with Lyme Disease, but the heavy metals have been chelated and I am getting better, slowly. My GI problems are almost completely resolved ... just some lingering diarrhea, but not related to eating gluten or not eating gluten. I was also diagnosed with bacterial dysbiosis that we are working on, which very well could be causing the lingering diarrhea.

The reason I wanted to test gluten to see if I was really intolerant was because Lyme was my primary health problem. Lyme can cause all kinds of sensitivities -- chemicals, EMF's, food, etc. -- so I thought that the Lyme might be causing my gluten intolerance. It appears that it was.

I just want to say at this point ... If someone reading this has celiac disease, you cannot eat gluten, so do not do what I did. I tested negative for celiac disease and did not have the celiac gene.

I cant say with 100% certainty that mercury is the cause of my gluten intolerance...but *something* certainly caused it.....prior to this event I had absolutely no problems with gluten.

Also I continued to have additional food intolerance and sensitivities after eliminating gluten which led me to believe there was much more to this then a gluten intolerance. I did not believe that the gluten intolerance was the cause of my problems....but intstead it was a symptom of something else that went wrong. Thats how I looked at it then and still to this day.

It didnt make sense to me that suddenly my body could no longer tolerate the foods I'd been eating all my life...and the Celiac tests (blood, biopsy and genes) were all negative.

Enterolab was positive but the stool test is not diagnositic. It told me I had a gluten intolerance but did not tell me *why*. Yes, I have leaky gut and yes, I'm reacting to gluten....but I wanted to know what had caused this to happen.

Not only was I dealing with the digestive issues but severe neurological symptoms as well. The digestive stuff was minimal in comparison....although I did have a 25 lb. weight loss and pretty bad malabsorption.

Everything I'm dealing with can be linked to mercury and I *did* become ill following my dental work. That was something that always stuck out in my mind. Now that I've been diagnosed and am under the care of some very knowledgable specialists....there is not much doubt as to what happened.

Besides the mercury...there are the infections that go along with it (yeast, parasites, etc.)....there is the leaky gut situation, there is enzyme dysfunction, etc. At this point all I know is that all of these things need to be treated...the mercury needs to be dealt with for any real healing to take place.

The DPPIV enzyme is required for digesting gluten and casein. This particular enzyme is highly sensitive to mercury and is easily blocked by mercury and other heavy metals. Other enzymes can also be blocked causing even more food intolerance. This might be the case for me....but at the same time I have gut infections and leaky gut....so its difficult to say what exactly is causing the gluten intolerance. It could be more than one factor involved.

The Dr.'s that I see are all specializing in treating Autism...alot of the issues are the same...the treatment is very similar. Being an adult, who had no issues for 3 decades....the liklihood that I will resume a "normal" diet is strong. The fact that I am not genetically susceptible to Celiac makes it a real possibility.

If mercury is behind the intolerance...and we are able to remove the mercury...enzyme function may be restored.

If yeast/leaky gut is behind the intolerance....getting rid of the mercury and treating gut infections should allow for the gut to heal.

Only time will tell but I know from other patients (and from what the Dr.'s have told me) that people do overcome their intolerances.

There is no evidence that my gluten intolerance is in any way related to Lyme...but for some people it is. My Lyme infection is not very active....and it is not in my digestive tract.

I'm happy to hear that you can eat gluten again ... albeit a tad jealous too ...

I was thinking that since you and Rachel (I don't know anyone else, but feel free to chime in) have had a lot of experience with gluten intolerance w / celiac, if you could tell others the kinds of things to look for that would cause gluten intolerance. And how you would proceed knowing what you know now. I remember when the OMG thread was started and this could save others a lot of time ..

Hope you feel better soon ... Marcia

Rachel,

We posted at the same time again. It appears that you and I are treating similiar problems.
But, I wasn't tested as I don't have a DAN doctor down here. Have you seen the research by Rich Von K on the GD-MCB (Glutatathione Depletion - Methylation Cycle Block ) ? He hypothesises that autistic kids and people with multiple immune dysfunctions (CFS) have blocked detoxification system.

The number one thing I would stress is that if you do not get 100% better on a gluten-free diet, then keep looking for what else is wrong. Be persistent with doctors and do your own research. If it were not for the internet I still would not be diagnosed.

Don't be jealous ... Lyme is no picnic. I would rather never have gluten again .... but it is nice not having to deal with both issues.

The first things I would look for is Lyme Disease, heavy metal toxicity, and bacterial dysbiosis. But do your research ... these are not health issues you can rely on just any old doctor to be able to diagnose.

...

Matilda, you are right. There are no set rules here as gluten intolerance is not widely studied.

I am double DQ1 myself, so there was the chance that it was a permanent intolerance just as a DQ2 or 8 who tested negative for celiac disease may respond like I did.

There REALLY needs to be some research done on gluten intolerance.

Lyme is a lifelong struggle, too, so don't be jealous, and because of the treatment I can have no sugar, alcohol, caffeine, yeast, or simple carbs .... of course, I cheat once or twice per month .... except for alcohol and caffeine.

Copied in from -

http://jnnp.bmj.com/cgi/content/full/72/5/560





So roughly 20% are DQ1s. Good to know .... I agree, they really need to research all of this more ... Marcia

I would say the same thing as Carla...if the symptoms are not clearing up on a gluten-free diet...if there is only temporary improvement...or if there is a worsening of symptoms....look into other problems.

Of course it does take some time to really determine how the diet is working for you. I was gluten-free for a few months before I started acknowledging that this was not the complete answer for me. I could tell that my body wasnt responding as it should...if gluten were the only cause of my illness.

I did need to eliminate alot of other foods....actually MOST foods....but still...in my mind this did not seem normal. It didnt feel right for me to have to restrict so many things just to be able to function.

Research, research, research!!

The answers are out there...but we have to be proactive because the medical community is not acknowledging these issues.

Mercury toxicity is very difficult to determine. Provoked urine tests are the best way to test for it.....however, its not always showing up. This is especially true for the autistic kids or in those who are not excreting well due to blocks in the pathway function. Many times its the ones who are most toxic that are having the lowest levels of mercury show up. It doesnt mean that mercury isnt the problem...it means the body isnt able to excrete it.

Also....mercury causes intracellular issues....it causes all kinds of disturbances in the body which are not identified in any kind of testing. All we know is that things arent working right...we do not feel good...yet standard tests reveal nothing abnormal.

Lyme works very much in the same way.

Both are difficult to diagnose.

You cannot get help with these issues seeing conventional Dr.'s.
Although two of my current Dr.'s are MD's.....they are outside of the mainstream and they are specializing in conditions such as chronic illness, autism, Lyme Disease and heavy metal toxicity.

The two *key* points I always try to make are the importance of educating yourself and finding the right Dr.'s who specialize in the problems you're dealing with. If the mainstream Dr.'s arent coming up with the answers....its because they dont HAVE the answers.

From what I have learned I would say that heavy metals and infections would be the main reasons for gluten intolerance w/out Celiac. Some might say that its leaky gut...but generally there is something causing the gut to become leaky in the first place. Most of us were not born with these issues....although obviously times are changing as far as that goes.

Also...all of these things cant be looked at as seperate issues...because they really arent. Our bodies are very complex and problems tend to pile up over time. It may start with mercury from fillings...which might overtime impair a persons ability to detoxify...as a result they begin to accumulate more and more toxins.

The immune system is affected by the toxic burden...as are the elimination organs. Infections are also an inevitable consequence of a toxic body...and THEY produce toxins as well. So...its really a cascade of events that occurs and gluten intolerance can be only one piece of the puzzle. All body systems can become affected and even though we would feel some relief by removing gluten...under these circumstances the relief would only be temporary.

If symptoms persist....if there are additional food intolerances, chemical sensitivities, brainfog, fatigue, depression, thyroid imbalances, etc....there are probably underlying issues that have yet to be identified.

I have seen this research and YES...its true that the autistic children, people such as myself...as well as those diagnosed with CFS or Fibromyalgia often do have blocked detox systems. If there were no problems detoxing...there would be no illness.

Impaired detoxification is a common factor in chronic illness.

The real question is *why*???? Why is there such an increase in ASD's (autism spectrum disorders), CFS, Fibro, etc.??

It is known that mercury can totally block the methylation cycle. It can disrupt all pathways and severely impair a persons ability to detoxify.

It is also known that Lyme can impair detoxification.

Toxins deplete glutathione....heavy metals and chronic infections (such as Lyme) can reduce glutathione to the point that the body does not have the ability to detoxify efficiently.

Its the toxins which end up causing the symptoms of chronic illness....the toxins are not able to leave the body and we become sick.

Dr.'s who are testing the autistic kids for Lyme have reported that up to 90% are positive for Lyme Disease. The majority of these kids have Lyme...most of them were born with it. They also have heavy metals as well as other infections.

The same thing goes for adults with CFS or Fibro....up to 90% test positive for Lyme...and they have heavy metal issues as well.

All of my Dr.'s have stated that these things go hand-in-hand. The people that have Lyme...will also have toxic levels of heavy metals. Likewise, those who have heavy metal toxicity....very often have Lyme. Most of these people also have additional infections and especially problems with yeast and molds.

Food intolerance is pretty much a given. My Dr.'s dont actually test for a gluten intolerance....I was told by every Dr. to avoid gluten, cow dairy, sugar and alcohol.

So I cannot say with 100% certainty that mercury was the cause for *everything* that went wrong with me. It certainly was the thing that tipped the scales but there were things building up long before my fateful dentist appt.

I dont know how much my Lyme infection may have contributed to my inability to detox mercury. I was exposed to alot of mercury in a short time...so that in itself may have been enough to cause a block in the pathway function. There is just no way to determine what came first.

I am currently being treated for everything but the priority is to get the mercury out. If that problem isnt addressed....none of the other treatments will be successful.

Great discussion ... We've learned a lot over the last few years.

While I respect Rich's work on the GD-MCB, I was wondering if many of us actually have an overloaded detoxification system as opposed to a blocked detoxification system. And maybe this is just semantics too. I do question his use of supplements to unblock the detoxification system as opposed to simply removing the toxins we eat first to see if it helps. This just seems safer to me and it's working for me so far.

IMHO Detoxing may be the key here though. I believe that once the body gets overwhelmed with toxins, whether it's all one toxin or several, it only takes one more to trigger an illness. This explains why there are so many holistic "cures" and "causes" for illnesses including CFS, Fibro, etc. Some people only have to eliminate mold, so they believe mold is the answer. Others believe that it's candida, because it cured them. And for a long time, I believed that everyone just needed to eliminate gluten or certain foods, but that's not been the case for me.

It's interesting that doctors are telling people with Lyme, mercury toxicity, etc to avoid gluten, cow dairy, sugar and alcohol. I realize these are toxic to some, but most people can handle these. Do you think these doctors are just hitting all the bases so to speak ? Have either of you been told to do a general detox ?

I'm not sure if detoxing in the manner most natural doctors recommend is a good idea. Treatments like chelation, colon cleansing, etc. It just seems to be too harsh. It makes an interesting marketing tool though. But, I really don't know enough about these and I may change my mind and try this as time goes on.

I would detox slowly using mild herbs, like cilantro and raw garlic, vitamin C, green tea, etc. IMHO Our bodies are already in a fragile state, no reason to tax our livers, hearts, etc with any drastic treatments.

Sooo, does this mean that the alcoholic who eats gluten, etc and detoxifies will out live us all ??

Marcia, you bring up good points (so has Rachel).

My doctor is not mainstream. No doctor treating Lyme with long-term abx is mainstream as it's not an accepted protocol. Oddly enough, my doctor is a holistic oriented MD and uses abx for Lyme treatment.

I am on a TON of supplements. I take Cholestyramine as a binder to eliminate toxins. I take everything from Juice Plus to mushrooms, to probiotics, to minerals/vitamins/essential fatty acids. I drink undenatured whey protein twice daily as it supplies what's needed to produce glutathione.

I do a daily coffee enema (yes, I was desperate when I tried it the first time, LOL, and not because of constipation but because of a toxic feeling). The coffee enema helps the liver to detox. For years it was in the Merck manual for use in cancer patients.

I also take a daily FIR sauna.

I was toxic in lead. I had my amalgams removed back in 1991 by a biological dentist and did the detox protocols, so my mercury, though there, was low. I chelated with EDTA suppositories and am getting ready to do another provoked urine test to see if it took care of it.

I think there are just a lot of toxins in dairy and gluten, so that's why it's good to cut them out. I also think they put unneeded stress on the digestive system because they are hard to digest ... just my opinion on that one. I did not cut out dairy because it was a signiicant source of calories for me and I still struggle with keeping my weight up.

I agree though with your perspective on gentle herbs. I was in a more severe state so needed more than that ... I was mostly bedridden with fatigue/pain/etc.

I do have my liver enzymes tested monthly.

I think sugar is bad for everyone. It not only does not supply nutrients, it takes away nutrients just to digest it. I have a bowl of ice cream once per month ... the more months that go by, the less I can eat because it's so sweet! I am now noticing how sweet other foods are! Before that was disguised by my sugar consumption.

Alcohol wreaks havoc on Lyme patients. Most of us become so ill from drinking even a little that we wouldn't dream of drinking it. In fact, that is a BIG symptom of Lyme Disease. One of the top Lyme specialists says that alcohol consumption is in the top three reasons that Lyme patients don't get better.

I guess this is the long answer, but I think detox is critical. Sometimes it's not enough though. Some of us eventually have to address the bacteria, metals, or whatever is making us ill.

I was into eating right, detoxing, supplementing, etc. for years before I got sick with Lyme ... from 1991-2003 I was healthy after having had three severe flare ups of Lyme Disease 1982-1991. Stress has always been my trigger. Stress reduction is critical in healing/detoxing. In 2003 we had a severe stress in our life for a long time ... it got me sick, but I already had the bacteria and some symptoms that I had just gotten used to living with, so the stress just made it so I couldn't live with it any longer.

Our immune systems are designed to fight bacteria ... but sometimes they need help ... so detox is important, but not always enough.

Detoxification *is* the key. These illnesses would not occur if the body were not overwhelmed with toxins. My entire treatment program is based on detoxification...thats what it takes to become well.
Allergies and symptoms of chronic illness are a result of a toxic overload.

The toxins accumulate....its never just one toxin that is making someone sick. Also, wherever the body is storing toxins there are also going to be some "bugs" hanging out in those areas. This adds to the toxic burden and furthur weakens the immune system.

It might be one thing that pushes someone over the edge....but prior to becoming symptomatic we are already very near the threshold.

Studies were done in which they took random healthy people off the street to be tested for a long list of toxins. The only requirement was that you had to be in good health....meaning no obvious symptoms.

They tested tissue, blood, urine, etc....and found that EVERY person was carrying loads of toxins. All of the toxins were found and in LARGE amounts.

These people were all free of symptoms... their immune system's were still able to cope with it all.

As you stated....it only takes one more thing to push someone over the top. The autistic children and those who are chronically ill have reached the limit and the immune system is no longer "handling it"....the immune system is struggling with the burden when symptoms are chronic.

Detoxification is the only answer as far as bringing balance back to the body.



Most people who are chronically ill are not handling these foods well at all. The Dr.'s arent suggesting the diet to cover all the bases....they are wanting to remove any obvious stressors on the immune system. These foods are all problematic for people who are already dealing with a toxic overload and immune dysfunction.

To help reduce stress on the immune system its best to not consume the foods that are difficult to digest and highly allergenic. Many people with Lyme...and especially those with heavy metal issues will be reacting to these foods....even if the symptoms arent obvious to them.

Sugar feeds the infections and weakens the immune system....so thats why sugar is not recommended when trying to fight off infections and when trying to detox.

Alcohol puts a huge burden on the liver.....which is already severely taxed when people have Lyme and mercury issues. Yeast issues also put a tremendous burden on the liver. Most people are avoiding alcohol long before the Dr. is telling them to....this is because its not worth several days of feeling hungover....for just *one* drink.




Depending on where your health is and what toxins you are dealing with....some people do need chelation and other stronger methods of detox to become well.

Heavy metal detoxification is not something that should ever be done without being under the care of an experienced and knowledgeable Dr.

It can be very harsh and unsafe if done incorrectly and not by an experienced Dr. If done correctly things can go smoothly. It all depends on the Dr.'s knowledge...unfortunately there are not alot of Dr.'s qualified to do this kind of treatment.

My Dr.'s have worked with me for one full year before even attempting any kind of chelation. There was alot of preparation...bringing down some of the infections, removing stressors (other foods were identified as probelmatic for me), supplementation to help my immune system and my elimination organs. I had to get to the point where I could tolerate the suuplements necessary to support detoxification of heavy metals.

Some Dr.'s might just jump into something like chelation without preparing the body for it....that can cuase some serious problems if the person is not able to excrete any of the metals.

I would never attempt to detox on my own..not even with the herbs. Cilantro is actually a very powerful chelator of mercury....it also crosses the blood brain barrier. If someone is mercury toxic and consuming alot of cilantro without being on a full detox program...it can be just as dangerous as any other chelator.

Personally, I dont think of chelation as a marketing tool. I think of it as a very necessary treatment....without it I do not think I would be able to regain my health. Mercury does not easily leave the body...especially the central nervous system...it has a half-life of 30 years. I definately need help to get it out if I want to become well.




Some people are more susceptible to certain toxins. There are genotypes that are more susceptible to mold toxins....there are also those who are more susceptible to Lyme toxins. Some people are just better at detoxifying than others....genetics has alot to do with how well our bodies handle the load.

So yes...I'm sure there are penty of alcoholics who are eating gluten, smoking cigarettes, lots of junk food, amalgam fillings, etc....who are doing ALOT better than I am as far as detoxing.

I guess the way I look at it is that the toxic load *has* to be lightened....and in order to do this some type of detoxification has to take place.

If you have mercury at the root of your problems.....it will help (to some extent) to eliminate alot of foods, eat organic, treat candida, treat other known infections, etc...but ultimately if you do not do something about the mercury....the other problems will not disappear. The infections will keep coming back...more food intolerances will keep popping up...etc. etc.