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Celiac And Other Autoimmune Diseases


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Jestgar Rising Star
What I want to know is that if gluten is the trigger in any of these diseases, why do they never seem to be clinically documented as going into remission when the patient is gluten free, and why would people with the same genetics for Addison's would have different triggers?

The last statement is a good one. I also had neurological symptoms prior to going gluten free. They resolved on the gluten-free diet. But that doesn't mean I was developing MS and it went in to remission. It simply means that I had gluten ataxia from gluten exposure and it stopped. MS and Celiac can be similar in symptoms, but they are not the same disease. I know no one really said that, just wanted to point that out.

I would say that gluten is not the trigger. To continue with the current example. A person has some slight pre-disposition to develop Addison's. Not an "Addison's gene", just some diffuse weakness/improper signalling/whatever within the endocrine system. If nothing goes wrong in their health, they never develop it.

If they also have Celiac's, any antibodies that are produced won't preferentially attack the endocrine system, they'll just produce symptoms there first due to the underlying defects. The symptoms would mimic Addison's, but disappear after removal of gluten.

If the attacks continue, the person develops Addison's disease. Symptoms won't resolve with removal of gluten because sufficient damage has been done that the system can't recover.

I'm not a fan of thinking things are OFF/ON in biology. I tend to favor the spectrum theories.

Also, how do you know you weren't Celiac when first exposed to gliadin. All you know is that you didn't have symptoms.

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Guest Doll
I would say that gluten is not the trigger. To continue with the current example. A person has some slight pre-disposition to develop Addison's. Not an "Addison's gene", just some diffuse weakness/improper signalling/whatever within the endocrine system. If nothing goes wrong in their health, they never develop it.

If they also have Celiac's, any antibodies that are produced won't preferentially attack the endocrine system, they'll just produce symptoms there first due to the underlying defects. The symptoms would mimic Addison's, but disappear after removal of gluten.

If the attacks continue, the person develops Addison's disease. Symptoms won't resolve with removal of gluten because sufficient damage has been done that the system can't recover.

I'm not a fan of thinking things are OFF/ON in biology. I tend to favor the spectrum theories.

Also, how do you know you weren't Celiac when first exposed to gliadin. All you know is that you didn't have symptoms.

I've never seen it documented that the antibodies produced to gliadin or the intestines in a Celiac can attack anything other than their specific targets. It's not the antibodies produced by Celiac's that cause damage to other organs, these organs are under attack from specific antibodies to themselves. In the case of Addison's, it's the adrenal cortex. These are specific. The symptoms of Addison's are specific to the loss of hormones produced by the adrenal gland, as it is destroyed. If you test positive for autoimmune Addison's, you have these antibodies. You may or may not also have Celiac.

The body has been shown to heal if autoimmunity can be removed (at least in most cases), so if gluten was the trigger for this autoimmunity, some remission in theory would show. To my knowledge there is little/sparse concrete if any documentation of this.

I would be fascinated to see this, which is what I think we all would love. But it doesn't seem to be the case.

I hope I am understanding you correctly!

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Jestgar Rising Star
I've never seen it documented that the antibodies produced to gliadin or the intestines in a Celiac can attack anything other than their specific targets.

I've never seen this either, but I've also never bothered to look it up. I'm just exploring alternative explanations which seem to me to be more plausible than "Celiac leads to other autoimmune disorders"

What if, instead of saying that the gliadin induced antibodies attack a specific organ, what if they can set off an event that causes antibodies to be produced against a specific organ? Then the rest of the argument still holds true, remove the pre-disposing condition (gluten) and you remove the resultant symptoms until sufficient damage has been done that the symptoms can no longer resolve.

I'll try to remember to look it up tomorrow, but I do remember hearing that RA antibodies are no longer considered to be the definitive sign of RA because many people have the physically evident symptoms, but no RA antibodies.

I think this may also fit with CarlB's adrenal exhaustion diagnosis. Not specifically Addison's, but damage starting.

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mle-ii Explorer

I wanted to remark on gluten being a problem for non-Celiac (what ever that really means). Non-Celiac, do you mean doesn't have the genes, doesn't show antibodies in the blood, doesn't show antibodies in the stool, doesn't have damage done to the villi or something else?

One remark is, that one could produce antibodies to any of those that show up in Celiac, all without having Celiac Disease (again what ever that means). If you don't believe me look it up in PubMed. (1)

Another thought is, that gluten ideed can have a detrimental effect to those who might not even ever develop Celiac. Mechanisms that I see are opioids derived from gluten (2) (and other common problem foods), gluten and other foods bind to the cells of the lining of the intestine (3) (imagine what the bodies response to this might be) or even immune response to gluten that passes through the gut wall and produces antibodies (leaky gut). Heck I'll even go out on a limb and say that folks who have been infected by pathogens looking like gliadin (we've mentioned a few already) will produce an immune reaction that could cause damage to the GI. What is the bodies response to a constant infection (gliadin) or other food proteins? I'm not sure, but I imagine it's not good.

1) Open Original Shared Link

2a) Open Original Shared Link

2b) Open Original Shared Link

3) Open Original Shared Link

Mike

I'll try to remember to look it up tomorrow, but I do remember hearing that RA antibodies are no longer considered to be the definitive sign of RA because many people have the physically evident symptoms, but no RA antibodies.

Look at this recent release

A gut feeling for joint inflammation - using coeliac disease to understand rheumatoid arthritis.

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jcc Rookie

I think too often we think in all or nothing ways, and look for a "one answer fits all" solution, rather than consider it might be an answer for a subset of the population. I think it is a shame when science discounts a possible treatment for a condition because it doesn't work for everyone, and sadly, that happens all the time.

10% of schizophrenics respond to dietary changes (gluten and /or casein). Not all, so this is slow to be accepted as possible.

Many children with autism respond to a gluten-free/cf diet, but not all. For this reason, it is still controversial some fifty years later after first proposed, because not every child responds...despite remarkable improvement in some.

About 20-40% of ataxia and peripheral neuropathy are caused by gluten sensitivity by recent study, not all.

Some seizures are caused by gluten sensitivity/celiac disease, but certainly not all.

There are many, many, many causes, nutritional, genetic and otherwise, that contribute to these diseases.

I wouldn't ever suggest anything close to all autoimmune disease begins with gluten (or casein) sensitivity, but you won't find me saying gluten sensitivity doesn't possibly contribute to other autoimmune disease besides celiac disease.

I think there are likely multiple causes and multiple treatments for many disease processes, particularly "autoimmune" disease. We categorize autoimmune and other disease by the symptoms, the part of the body involved, rather than by the triggers or cause...because the triggers or cause are often unknown.

Celiac disease is the only autoimmune disease where the cause IS KNOWN, but researches are starting to suspect that gluten can cause autoimmune attack of other organs with or without co-existing celiac disease...and perhaps other gluten related autoantibodies that we don't yet know about will emerge.

Other suspected causes?? Bacteria? Virus? Spirochete? Other food sensitivity? Vitamin deficiency?

We have to stop thinking that there is only one cause/trigger of a disease or that one treatment fits all. I just don't think it works like that. Heck, a gluten free diet doesn't fix ALL celiacs, as there is refractory sprue. Do you suppose those patients might need a casein, soy free diet, too? Or maybe more of a certain nutrient?

Does this make sense to anyone else?

Cara

I wanted to remark on gluten being a problem for non-Celiac (what ever that really means). Non-Celiac, do you mean doesn't have the genes, doesn't show antibodies in the blood, doesn't show antibodies in the stool, doesn't have damage done to the villi or something else?

LOL...good question! I think all of the above apply. Good post!

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mle-ii Explorer
I think too often we think in all or nothing ways, and look for a "one answer fits all" solution, rather than consider it might be an answer for a subset of the population. I think it is a shame when science discounts a possible treatment for a condition because it doesn't work for everyone, and sadly, that happens all the time.

10% of schizophrenics respond to dietary changes (gluten and /or casein). Not all, so this is slow to be accepted as possible.

Many children with autism respond to a gluten-free/cf diet, but not all. For this reason, it is still controversial some fifty years later after first proposed, because not every child responds...despite remarkable improvement in some.

About 20-40% of ataxia and peripheral neuropathy are caused by gluten sensitivity by recent study, not all.

Some seizures are caused by gluten sensitivity/celiac disease, but certainly not all.

There are many, many, many causes, nutritional, genetic and otherwise, that contribute to these diseases.

I wouldn't ever suggest anything close to all autoimmune disease begins with gluten (or casein) sensitivity, but you won't find me saying gluten sensitivity doesn't possibly contribute to other autoimmune disease besides celiac disease.

I think there are likely multiple causes and multiple treatments for many disease processes, particularly "autoimmune" disease. We categorize autoimmune and other disease by the symptoms, the part of the body involved, rather than by the triggers or cause...because the triggers or cause are often unknown.

Celiac disease is the only autoimmune disease where the trigger IS KNOWN, but researches are starting to suspect that gluten can cause autoimmune attack of other organs with or without co-existing celiac disease...and perhaps other gluten triggered autoantibodies that we don't yet know about will emerge.

Other suspected causes?? Bacteria? Virus? Spirochete? Other food sensitivity? Vitamin deficiency?

We have to stop thinking that there is only cause to one disease or that one treatment fits all. I just don't think it works like that. Heck, a gluten free diet doesn't fix ALL celiacs, as there is refractory sprue. Do you suppose those patients might need a casein, soy free diet, too? Or maybe more of a certain nutrient?

Does this make sense to anyone else?

Cara

LOL...good question! I think all of the above apply. Good post!

Exactly, which is why (I remarked on it in an earlier post) I found the studies showing that certain pathogens (one was a fungi and the other was a virus, that both look like gliadin) weren't the cause of Celiac quite laughable. They said because pathogen A only showed up in X% of cases it wasn't a trigger, others said that because pathogen B only showed up in Y% of cases it wasn't a trigger. Hello, how about looking into multiple triggers, multiple pathogens that brought about lack of tolerance to proteins. Seems pretty plausable to me.

Along the same lines I'm starting to think that the Lymphocytic Colitis (Microscopic Colitis) is most likely a symptom of something else. Some unsuspected/undectected pathogen.

Seems that bacteria and other pathogens are pretty clever. Take a look at this recent article:

Open Original Shared Link

Huh, some pathogen is able to mimic something else in the body and cause all sorts of problems.

I think they're clever enough to avoid current detection for sure, and I know that they are clever enough to hide away and turn on at a later time.

Hmmm... seems I started to ramble a bit. :)

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ArtGirl Enthusiast
that ....Do you think that both the genes for autoimmunity (including Celiac) and gluten intolerance run in your family? That's my guess. You "lucked" out?

If you were to actually devlop an autoimmunity without those genes and only GI genes, that would be a link worth exploring. It is possible to have both conditions in one person or in one family, so that would have to be ruled out.

I have to admit I am not familiar with Entrolab, but have you had a full Celiac panel and gene test through your MD?

I don't think that there are celiac genes in my family's gene pool, otherwise there would have been more unexplained illness and/or death. I remember my mother saying that my sister was the only one who she could find out about who had Type 1 Diabetes. All she could turn up was one child two generations previous that had died young. My parents and their siblings have all passed away now, so there's no one left to ask questions of.

I have not had a celiac panel for myself since I've not had medical insurance for years and so haven't gone to doctors much - but even when I did have ins. years ago and was trying to find out why I had D so much, the doctor didn't have a clue and only ran a few general tests. I didn't even realize what Celiac was until a few months ago when I found this board.

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jcc Rookie
Seems that bacteria and other pathogens are pretty clever. Take a look at this recent article:

Well, that sort of flew past me :blink: . There is a woman who used to post on BT who had some very interesting theories about fungus as being a trigger for Celiac Disease. Very interesting stuff, not that I could understand all of it. She was a biochemist or similar by profession, and I never even took high school chemistry. I like to keep an open mind as things are not always as black and white as they seem, particularly not in a gray area like this~

Also, triggers and cause are not exactly the same. Celiac Disease is caused by an abnormal immune system response to gluten, although there may be various environmental triggers to set things in motion. I confuse the terms all the time, and at times even when I am trying hard to think about it... I have trouble distinguishing.

Cara

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Guest ~jules~

Ok, my great grandmother on my dads side died of lymphoma, three months later my grandmother dies of lymphoma, (my dad's mom) My aunt (my dad's sister) decides to never have children because of her relentless stomach problems. Okay, now I have celiac....hmmmmmmm.....Oh and my mother is diabetic....Now that makes me think too much.

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gfp Enthusiast
I am with you on the AD-12 theory too, anything is possible. Maybe one idea is right, maybe both are, maybe neither are.

I can say that with our current medical standards, most people who do not EVER test positive (including borderline elevated) for Celiac in ANY way, shape, or form, do not have Celiac. The new tests are very specific. I agree testing frequency is poor for this disease, but my point initially was that most people who have autoimmunities DO NOT have Celiac. Steve posted a great snippet saying 12% in a group of those with Addison's have Celiac. Yes, that is a lot. But what about the other 88% that DON'T have it? Which was proved within the study? This could just demonstrate the genetic link some people seem to have, in which they are prone to multiple autoimmune diseases and have a defective immune response.

That depends what you mean by do not have it.

Do not have elevated AgA, AgG and transglutamase or one of the three OR biopsy? or were not tested etc.

Just bear with me and I'll try and put it all together...

I also think it needs to be made clear that those who say they have gluten intolerance and have no autoimmune diseases weren't necessarily protected from the gluten-free diet.
No but perhaps some of them were? and this is really the point.

If we start off with a presumption that they cannot then we will never test....

I can point you to old studies on h. pylori where the same arguament is used. The big arguament was always but sme people with jugedenal ulcers don't have h pylori. Once testing was routine and methodology was brought in and people got used to looking for h pylori then the numbers went up.

BUT some people still don't have h. pylori however many DO benefit from antibiotics.

They generally don't have the genetics to get autoimmune diseases in the first place. They say they react to gluten, but they are not Celiac. If they have no autoimmune or genetic markers for Celiac, I am saying that the risk of additional autoimmunity is the same as the general public.
Once again that presupposes DQ1 ios the only genetic marker for celiac... and this is not surprising since the majority of studies have been done with populations derived from type R haplotype BUT everytime its extended we start finding non type R haplotypes as well and perhaps there is a second minor gene.

It's like saying that Type 2 diabetics (a NON autoimmune disease with the same name) have the same risk of additional autoimmune diseases as Type 1 (autoimmune) diabetics, even though they are completely different diseases complete with different genetics. As I said, I (and the whole medical community) don't really know what the mechanism behind "gluten intolerance". It doesn't seem to be autoimmune Celiac, though. I am NOT saying that the gluten-free diet is not beneficial to them, just that the autoimmunity issue is not there. I personally can admit I do not know much about non-Celiac gluten intolerance.

I think this is not surprising because nobody seems to know much about it. The studies just have not been done. Lets face it the oats issue is still not conclusively proven either and yet oats contain no gliadins.

Why, because the studies that have been done have been done on specific groups and in relation to biopsy proven celaic (or other criteria)...

I do want to point out that some people (fairly rare) have innate antibody deficiencies. This might explain those who test negative but react or have intestinal damage on biopsy with negative bloodwork.

I don't think Alba is working on a cure per se, but university researcher centres are. There are a handful of scientists searching for fame, fortune, or maybe have a child with Celiac and just really want to help. A cure can make money as well. Think about how much people pay for cancer treatment hoping to be free of disease. I live in Canada, but I can just imagine.

Yes but almost all cancer research is privately funded. This is a rather different ballpark to trying to get a grant on say studying human sexuality (just watched Kilnsey again :D)

Hey gfp, don't you have a PhD in Organic Chem? If anyone is going to "cure" Celiac, it might as well be you! ;) I'll be your lab gopher....hehe....

Unfortunately for this its organic geo-chemistry. Most of my "patients" have been dead for 300ma, liquified and turned into oil....

However on to the whole thing....

Medical science is somewhat at the same stage as physcis at the start of the 20C.

Watson and Crick did not dicover the relevance of DNA until 1953 and common day uses of genetics are still expanding but this is in science, not medicine because over the same time medicine started double blind long terms trials so even after scientifically cigarettes were proven to cause cancewr it took 50 years of clinical trials during which time many people died.

I pretty much think that diseases are still looked at as symptoms based.

That is GI diseases are classified as such... but also that we clump diseases together in historical ways and this prevent links being noticed.

The effect of this is that in some cases more than once disease or with different causes is called the same thing and the same disease with different symptoms or manifestations is not recogniosed as the same disease with a different expression.

In the same way the commonality of diseases in different patients is not recognised partly due to it being in different specialisms but also simply due to most specialists ignoring what the patient tells them.

The non linking of GERD and celaics being one...

This doesn't mean all GERD is caused by one mechanism either ... and lets not even start with IBS.

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Nancym Enthusiast

Autoimmune diseases are really hard to diagnose a lot of the time. Some of them take dozens of years before they're diagnosed. I suspect a lot of people have an autoimmune disease that are never diagnosed. I remember watching one Mystery Diagnosis where a woman with Behcets took 17 years to get a diagnosis. Probably it takes getting to a fairly acute stage before someone gets a proper diagnosis, some people just never get all that acute.

Unfortunately for this its organic geo-chemistry. Most of my "patients" have been dead for 300ma, liquified and turned into oil....

You sound like a typical doctor! Most of your patients are dead. :P

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covsooze Enthusiast

I'm feeling the after effects today of either a glutening or a caseining, so this post won't be long and detailed, but I just wanted to throw something into the pot. I'm reading The China Study by Colin Campbell, who apparently is very big in the field of nutrition. He did a massive study in China of people's eating habits and whetehr there was any link with their health. Unfortunately, it doesn't seem to refer to gluten or coeliacs, but it did find a big link with autoimmune cases in general, and that was casein. He's not saying casein causes autoimmune diseases, but rather, where the genes are there, having casein in the diet can contribute to the disease triggering. there's a lot of research to back this up. Equally, and perhaps more surprisingly, removing casein from the diet can then significantly improve the health of anyone with an autoimmune disorder.

Dr Campbell advocates a vegan diet, as that is what his research - and that of others - demonstrates prevents disease of all types. Sadly, a lot of us (including myself) are intolerant to many plant based proteins, so veganism is just not practical. But, it's a very interesting study, nevertheless.

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Jestgar Rising Star
Watson and Crick did not dicover the relevance of DNA until 1953

I just wanted to point out that they published the structure of DNA, based on data that was in part stolen from Rosalind Franklin....

I think too often we think in all or nothing ways, and look for a "one answer fits all" solution, rather than consider it might be an answer for a subset of the population.

I have a friend in her forties. Every female member of her mothers family has had bi-lateral breast cancer. Her mother is currently undergoing a second round of chemotherapy for ovarian cancer after surviving bi-lateral breast cancer many years ago. It's the same etiology as the cancers from the two "breast cancer genes" BRCA1 and BRCA2.

Recently her mom entered a study where they typed for these two genes. She has neither of them. Does this mean she doesn't really have cancer? That all of her sisters didn't die? That her daughter hasn't spent her life assuming she'll die before she's 50?

Don't get hung up on what's known.

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gfp Enthusiast
I just wanted to point out that they published the structure of DNA, based on data that was in part stolen from Rosalind Franklin....

Don't get hung up on what's known.

Hey I'm trying to moderate my inbuilt "correctness gene" here :D

It might interest you to know I have followed her around... Kingston on Thames (bachelors degree), Paris (now) and as part of my MSc. thesis I used the XRD at Birbeck.

I am for obvious reasons avoiding the US... :D

However I don't think its fair to say stolen since Crick and Franklin worked together and Franklin was a close family friend.

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Nancym Enthusiast
Unfortunately, it doesn't seem to refer to gluten or coeliacs, but it did find a big link with autoimmune cases in general, and that was casein. He's not saying casein causes autoimmune diseases, but rather, where the genes are there, having casein in the diet can contribute to the disease triggering. there's a lot of research to back this up. Equally, and perhaps more surprisingly, removing casein from the diet can then significantly improve the health of anyone with an autoimmune disorder.

Dr. Fine mentioned in his lecture that Casein seems to be something that might explain autoimmune diseases. He also seemed to think that dairy products cause more osteoperosis than it prevents, but he didn't elaborate.

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gfp Enthusiast
The study, published in the Lancet in 2001, found that mortality in people with celiac disease was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the gluten free diet. A delay in diagnosis of more than one year and a severe presentation of celiac disease at diagnosis doubled the observed deaths during the study. Non-adherence to the gluten-free diet, defined as eating gluten once a month or more, increased the relative risk of death six-fold. These factors were highly statistically significant. There are limitations to this study, however, including the fact that people diagnosed in the 1960’s were more likely to present with a severe case of celiac disease, including intestinal lymphoma.

Alessandro Ventura and colleagues conducted an important study on the presence of autoimmune disorders in people with celiac disease. Published in 1999 in the journal Gastroenterology, these researchers recruited 909 patients with celiac disease, as well as 1268 healthy controls and 163 patients with Crohn’s disease. The results were dramatic, and highly statistically significant.

Ventura found that the risk for developing other autoimmune disorders increased relative to the age of the person with celiac disease at diagnosis. For instance, a child that is 2 years of age has a 5% chance of developing another autoimmune disorder, but a person over 20 years of age at diagnosis has a 34% chance.

Source :

UNIVERSITY OF CHICAGO CELIAC DISEASE PROGRAM

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barbara3675 Rookie

In agreement with Ravenswood's posting on 9/11 and Nini's on 9/6. I had fibromyalgia and a thyroid problem first and then discovered that I was gluten intolerant through testing at Enterolab. I fully believe that the fibromyalgia is much better due to the lack of gluten in my diet. Doctors just aren't studying up on this because there are not pills for it, but sooner or later they will catch on to the benefit of all of us an we will have been the smart ones all along.

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lonewolf Collaborator
I've met several people who had MS diagnoses who have reversed their symptoms by dietary changes outlined in the MS-Direct site (gluten free, casein free, legume free, more). I personally know somebody whose Sjogren's symptoms and associated antibodies reversed on a gluten, casein, soy, and corn free diet. Personally, I think some of the reports on Open Original Shared Link, Open Original Shared Link, and Open Original Shared Link remitting on a gluten free diet are most remarkable...so don't miss those pages either.

In any case, it isn't just lay people who are thinking this. Researchers are actively looking at these things, and the spectrum of gluten sensitivity does seem to be widening.

Hope this helps~ Open Original Shared Link

Cara

I just now read through most of this thread, and realized that I am fairly ignorant of all the ins and outs of understanding genes and T-cells etc. But this post caught my eye because of the mention of kidney disease. I've had psoriasis for about 20 years, was diagnosed over 10 years ago with hypothyroid and psoriatic arthritis. All of these are autoimmune. I stopped eating wheat, eggs, soy and dairy over 10 years ago, got over the arthritis completely, but still have the psoriasis and thyroid issues. I had been gluten "lite" for about 7 years and decided to try to add spelt into my diet. Very soon after that I developed a kidney disease that was determined to be autoimmune. I realized that there was a link to my disease and gluten intake, so went gluten-free. My kidney disease went into remission. I started on spelt again and the disease relapsed. I went gluten-free again and have been in remission for over 2 years, even before I was FANATICALLY gluten-free including CC. The doctor doesn't have time to listen to me tell him that it's related to gluten - he knows I'm crazy. So, I'm probably the only person in the world who is managing my kidney disease, which there is supposedly no cure for, by maintaining a gluten-free diet. And there will never be any research into my specific disease because it is usually managed by large doses of prednisone which do bring about periods of remission. My unscientific mind has determined that there is a direct correlation between autoimmune diseases and gluten intake and I am living my own experiment.

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Alohastar Newbie

Nice information from PubMed etc. You're A+. thanks.

Open Original Shared Link

This is a good site about autoimmune disease.

Autoimmunity requires a trigger - that is true, Untreated celiac can provide the trigger because as long as gluten is ingested the immune system is producing cells that damage the villi. Type 1 Diabetes - although treated with insulin - is an ongoing attack itself. That if we found a way to stop the immune attack - the islet cells could regenerate, but they are destroyed faster than they can regenerate. That is why somone with diabetes often develops hashimotos hypothyroidism or celiac.... because their system is geared up all the time

Celiac is one disease where we can calm the immune system by avoiding gluten - we avoid gluten - the immune attack stops. We ingest gluten - it will begin again immediately because the T cells have memory. Its about the only immune mediated disease where we can stop the immune response by avoiding the "antigen". An analogy related to an immune response would be a stinging insect allergy - as long as you dont get stung - you wont have an immune response. Just like gluten - as long as you dont eat it - your immune sytem is quiet. So many think that if a celiac goes gluten-free , the immune system calms down and hopefully reduces the possibility of other immune disorders - because you took away one potential trigger for further disease. But there are many triggers.

If a genetic flaw is there and the right trigger occurs (it can be environmental, viral, bacterial) the autoimmune disease will develop.

Some articles about celicc and autoimmune

Pub med :

Open Original Shared Link

Open Original Shared Link

Celiac Disease-Associated Autoimmune Endocrinopathies

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  • 3 weeks later...
grace333 Newbie
;) i have had m.s. for about 30 yrs. recently i was in a store and picked up a book with an article on a gluten free, lowfat diet for m.s. everywhere i turn this keeps popping up. i lived in so. america for three yrs symptom free and actually did things i had't done in many yrs. since returning to the u.s. things have really detereated health wise. i have to look at many factors but reading the article on this website on m.s. and celiac disease has me investigating the two diets between so. america and here in the u.s thank you all for continued posting as i investigate further God bless ;)
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mysticfrog Newbie

:blink: Greetings all

I am new to this site ...and this disease. It is just about the straw that broke the camels back. When I was 25 I was diagnosed with pernisious anemia. Rare for that age I am told. Then came the autoimmune thyroid disease. My faithful body killed it mostly and I take the max amount of Synthroid. Then came the Lupus. First looked at back when I was 25 and then firmly diagnosed ten years ago. Them came the diabetes. Type I at my age, seems I am producing antibodies against the pancreas. I am now 50 and today my Dr called back with the results of new slews of test for chronic nausea, tummy pains and weightloss...and quess what. Celiac. ARGGGGGGGG!!!

I have been told by Doctors at Duke University and at the Mayo Clinic that people with autoimmune problems tend to develope more than one problem. All stand alone things but usually clusters for people like me. I can not tell you how frustrated this make me. I just keep wondering ....what next.

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2kids4me Contributor

Welcome - you are not alone - the cluster is in myself and my two kids.

You are not alone, it is frustrating and depressing at times.

my son and I developed a way to deal with bad days - injections that hurt? the needle must DIE - he smashes it into concrete or darts it into a cork board we made :rolleyes:

When diagnosed with celiac he wanted me to rent a cement truck and run over a loaf of bread and a box of Tim Horton donuts. He said it tongue and cheek but it gives us a laugh or two on a bad day B)

You are in the right place because many on this board have multiple medical issues /autoimmune / food allergies in addition to celiac.

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  • 5 months later...
confused Community Regular

I just read threw these post and found them very helpful. I wanted to bump them up for some other newer members could read them.

paula

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georgie Enthusiast

Thanks for bumping this up Paula.

Once a separate disorder (hypothyroidism, diabetes for example) develop - going gluten free is not the treatment for those diseases so it wont help those particular diseases once they develop...

I have noted that now I am gluten-free - that I need HALF the Armour Thyroid that I was taking before. I was taking 240mg Armour previously for about 5 months, then after going gluten-free my T3 blood tests went high and my Dr wanted me to take less. I did, went dairy free as well , and am happily chirping along on 120mg Armour.

I am on a few Thyroid lists and trying to tell folks this but they don't want to know about a diet change :lol: Even if they have 'IBS' and 300mg Armour is not working. If anyone wants to go to STTM and help me they are welcome cos I am getting puffed out trying ! ;)

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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