Celiac Versus Gluten Intolerance - Questions

[nasalady]

I guess I'm still trying to figure out a definitive way to differentiate between the two conditions.

If the "gold standard" for diagnosis of celiac disease is the biopsy, then damaged villi only happen if you have celiac disease, right? So if a child who had the diagnosis "Failure to Thrive" suddenly started to gain weight after going gluten free, this would indicate celiac disease rather than gluten intolerance?

Any opinions out there?

[MySuicidalTurtle]

Celiac Disease is a genetic auto-immune disorder while an intolerance is not an immune reaction. People with either would improve once off gluten.

[mushroom]

So if you had a "gluten intolerance" and autoimmune disorders (RA, Hashimotos, etc.,) they would be unrelated to the gluten??

[nasalady]

Celiac Disease is a genetic auto-immune disorder while an intolerance is not an immune reaction. People with either would improve once off gluten.

Thank you.

I am well-aware of the autoimmune nature of celiac disease.

Clearly someone who is either celiac or gluten intolerant would "improve" off gluten....however, please define "improve" with respect to damaged villi. Does a person with gluten intolerance have malabsorption issues? If so, please explain the mechanism by which the villi are damaged if it is not via an autoimmune reaction?

[nasalady]

So if you had a "gluten intolerance" and autoimmune disorders (RA, Hashimotos, etc.,) they would be unrelated to the gluten??

My GI doctor diagnosed me with celiac despite negative bloodwork and biopsy mainly because of my many other autoimmune diseases. The latest research indicates that other autoimmune issues are frequently tied to celiac disease.

[gaingus]

See, this is the same question I have. My GI said I am not a celiac because the biopsy and the antibody tests were negative. The genetic test was positive and I have all but a couple of symptoms (one of them is DH). So he said I have a "severe gluten intolerance".

[nasalady]

See, this is the same question I have. My GI said I am not a celiac because the biopsy and the antibody tests were negative. The genetic test was positive and I have all but a couple of symptoms (one of them is DH). So he said I have a "severe gluten intolerance".

But I've read right here in this forum that if you have DH you automatically have celiac disease. Here are a couple of links that support this:

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[Mother of Jibril]

See, this is the same question I have. My GI said I am not a celiac because the biopsy and the antibody tests were negative. The genetic test was positive and I have all but a couple of symptoms (one of them is DH). So he said I have a "severe gluten intolerance".

Have you been officially diagnosed with DH through a biopsy? If so, then you have more than a "severe intolerance" to gluten... you have celiac disease.

As to your question, nasalady...

I'm not an expert on "failure to thrive," but it seems like it would be connected to malabsorption. Celiac disease can cause that, but so can other things... here's a list from the NIH:

Open Original Shared Link

Just like any adult who experiences a return to health on a gluten-free diet, I'm not sure that alone would be enough to diagnose celiac disease. Although... there are problems with detecting early celiac (before the villi are obviously damaged). It's kind of a chicken-and-egg problem

[MissyMayhem]

My question is, if it's not Celiac what would cause a gluten intollerance? There should be no receptor for the gluten so why would there be any reaction. It's not an allergic reaction because the syptoms are different then in gluten intollerance.

I'm starting to think that maybe celiac can just be hard to find unless it's "active" (ie. you on a high gluten diet and your stomach is outright compromised as a result, then it will show on a biospy). Again, only if they are looking for it, and as you may be finding doctors often don't look to hard because they don't beleive there's anything there. And so many people are being told they don't have celiac after only the blood test or testing done while on a low gluten diet, both of which can be return fause negatives, they and go on there mary way undiagnosed.

I'm guessing even with a gluten intollerance you would get malabsorbtion issues due to the stomach not working properly. Has anyone seen the research into animal diets? I know leading research is recommending horses, dogs and rats eat a gluten free diet. I found out because my horse had pain, joint issues, depression, frequent colic (stomach issues) after years on a high gluten diet, once off it she recovered fully (thx to the mounted polices nutriationist who voluteed her help as the horse was a rescue). My dads dog got a gluten intollence from leaky gut after eating some rat bait, sigh. Gave her constant ear infections and rashes for years before we figured it out. While the many food allegies (corn, chicken etc) went away she still can't eat gluten without reacting.

I'm in the process of trashing my stomach with gluten so the biopsy will work, if it comes back negative I will still return to the gluten-free diet as I can't function off it. Taking top quality suppliments "Fibro-plex", B complex, zinc, iron, vitimin and mineral tablet, trace minerals and chinese herbs. The chinese herbs are the only thing that helps with the pain and nausea. None or the many pain killers and ulcer med the gp gave me worked long term. It's become something I had to put a lot of work into getting right because I was loosing my quality of life (in pain, miserable because I couln't work) and I'm only 31.

[nasalady]

I'm not an expert on "failure to thrive," but it seems like it would be connected to malabsorption. Celiac disease can cause that, but so can other things... here's a list from the NIH:

Open Original Shared Link

Just like any adult who experiences a return to health on a gluten-free diet, I'm not sure that alone would be enough to diagnose celiac disease. Although... there are problems with detecting early celiac (before the villi are obviously damaged). It's kind of a chicken-and-egg problem

Well, I'm asking about this because of my adopted daughter, Emma, who will be three tomorrow. She has many, many medical issues, but I've wondered about a gluten problem because she's my biological granddaughter, and I have celiac disease. My other granddaughter Carly has celiac, diagnosed via biopsy.

Emma is HLA DQ2, and has celiac disease on *both* sides of her family tree (her biological father had a brother who had both celiac and MS). She weighs only 22.6 pounds (10.25 kg) at the age of 3, and is still wearing baby clothes (9 months and 12 months sizes).

Her gastroenterologist ran the celiac panel on Emma, and it came out negative, but I've heard that this happens frequently with small children. The doctor decided not to biopsy her because of the negative bloodwork.

I put her on the gluten free diet anyway, and her eczema and keratosis pilaris started to clear up almost instantly. She has also gained weight in the past few months since she went gluten free....in January she weighed less than 21 pounds and the doctors were discussing whether or not she needed a g-tube. Now her pediatrician is ecstatic over the weight gain and says no g-tube!

I think it sounds like celiac disease.

That is the reason I posed the question.

[shirleyujest]

I'm guessing even with a gluten intollerance you would get malabsorbtion issues due to the stomach not working properly. Has anyone seen the research into animal diets?

Interesting issues you raise here. I've asked myself the question Nasalady has, and wondered if there is a clear demarcation between celiac disease and gluten intolerance. Yes there has been an autoimmune process identified with celiac, but since being dx'd with lupus I've done a lot of reading and there are many diseases treated by doctors of different specialties that are autoimmune processes manifest in different systems of the body -- MS (myelin sheaths), SLE (connective tissue, but it can be in any organ including the brain) even rheumatoid arthritis. Aren't some allergies autoimmune processes too?

I always want clear answers to questions about what's happening to my health/body -- to the extent I can understand without benefit of a medical education anyway -- and of course I'm realizing I may not have an answer to the celiac/intolerance question. Two symptoms, ataxia and peripheral neuropathy, are right out of the book. But who knows, maybe these things can happen with an allergic reaction? Maybe gluten intolerance occurs along the spectrum with celiac disease rather than having a firewall between them? I get the feeling even doctors may not all be in agreement whether there is a crisp distinction.

And maybe it doesn't matter. What I'm telling friends is that I have a gluten allergy. When people are kind, it doesn't matter, they get that you might become rather sick with gluten and my pals anyway would never give me a bad time over it. (When I was dx'd w/lupus I lost a lot of "friends" who didn't want to deal with the changes in my health, e.g. griping because vision problems interfered with my ability to drive so they had to do "more than their share"; the good news is once sick, I got a new batch of friends and they're nicer people.) A professional friend invited me over for a breakfast meeting this weekend, and I just brought my own gluten muffins and shared. I was so glad I did b/c all he had was rolls and muffins. He apologized and I said don't be silly, how would you have known of my allergy? So I think in most circumstances it can be handled with courtesy and just making sure you're covered.

Now I'm babbling. Bottom line, as long as I'm getting better it's a win.

[chatycady]

Can a lack of vitamin D cause gluten intolerance? I live in the upper midwest and am very low on D. I am getting better since taking D. But is the deficiency due to gluten intolerance? Or is the gluten intolerance due to the deficiency?

I also have pernicious anemia and a 4 family members with thyroid disease. Non of us tested positive for celiac (blood)and none of us had a biopsy.

Celia? Gluten intolerance? Aren't they both very dangerous? Don't they both cause an autoimmune response? Doesn't the digestive system "feed" the immune system and keep it in check?

[ang1e0251]

I wonder if GI is just underdeveloped celiac disease. Like before you have so much damage they can find it easily, they just list the test as negative and you're GI not celiac disease. But if left to itself and damage continues, then does it become celiac disease when the damage finally reaches the tipping point and you are really compromised?

Can some people be so IGA deficiant that they will never test positive for antibodies? I am really out of my realm here so I could be completely wrong.

I think about testing and how it seems to be so inadequate in many cases. So many report they go misdiagnosed because of negative bloodwork. I just wonder if GI is the precursor of celiac disease....

[TotalKnowledge]

There is a tendency in medicine to look at specific criteria categorize it, slap a label on it and call it a disease.

It could be that the terms Celiac Disease, Gluten Intolerance, and Wheat Allergy are all the same basic problem. An inability of the body to process wheat gluten. The specific criteria of Celiac's Disease as I understand it is an autoimmune response where the Cilia of the intestine lining are damaged. Once cause two reactions, same result. Halting the intake of gluten in either case is the remedy. Does it really matter the specific blood levels, or the exact reaction it causes?

Perhaps the reason so many of the autoimmune diseases are comorbid is a root cause rather than the fact they occur frequently together.

[nasalady]

There is a tendency in medicine to look at specific criteria categorize it, slap a label on it and call it a disease.

Very true!

It could be that the terms Celiac Disease, Gluten Intolerance, and Wheat Allergy are all the same basic problem. An inability of the body to process wheat gluten. The specific criteria of Celiac's Disease as I understand it is an autoimmune response where the Cilia of the intestine lining are damaged. Once cause two reactions, same result. Halting the intake of gluten in either case is the remedy. Does it really matter the specific blood levels, or the exact reaction it causes?

Well, an allergy can elicit an anaphylactoid reaction....I believe that the mechanism is different?

However, many on this board, and even a few doctors are beginning to believe that "gluten intolerance" is frequently just early stage celiac disease yielding negative blood work and biopsy results.

I'm still trying to figure it out, which is why I started this thread.

Perhaps the reason so many of the autoimmune diseases are comorbid is a root cause rather than the fact they occur frequently together.

Celiac disease is probably the "mother" of other autoimmune disorders:

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