Celiac & Gluten Intol. The Same?

[jazzbaby]

i was told yesterday, by some with with celiac, that gluten intolerance is not as bad a condition, and i need to know which one i have. from what I've read, i don't see that they are different.

to confuse matters, my gastro. Dr. told me not to worry about my low iga number(52) yet my reg. m.d. is treating me for celiac because of it.for about 10 days i have been eating gluten and dairy free, and do feel much better. not perfect, but a lot better.

[cassP]

1st- your iga number of 52-> i take it that's your number from the Total Iga Serum test?? mine is always 60. your doctor is right- you shouldnt worry- it's really not a big deal. it SHOULD be above 80... all it means is that your immune system isnt as up to speed as most people. as long as you eat right and take care of yourself- you're going to feel just as healthy as the next person. i THINK ive read that if your IGA is LOW ENOUGH, then you might need some kind of immunological injections... but im assuming you're ok.

low Iga is slightly more common in Celiacs than in the normal population.

were you tested at all for Celiac?? any antigliadin or tissue transglutamase antibody testing??? your low Iga number could possibly make your antibody tests look inconclusive...

in my honest opinion-> there IS NO definitive answer to your question as to which is worse- Celiac or Gluten Intolerance. either could be worse or not as bad- depending on the individual and the rest of their genetics. Celiac is specifically the autoimmune reaction in the small intestine. Gluten can wreak havoc anywhere in the body and has been linked to a TON of other autoimmune & inflammatory reactions.

[mushroom]

I agree that it would be important to know what tests were run, and the results and ranges of them all, to form an opinion on whether your "low" IGA was significant. I also happen to agree with cassP that gluten intolerance and celiac disease are both manifestations of gluten intolerance, with celiac disease measurable by the medical profession and non-celiac gluten intolerance not, and it is hard to quantify which is more serious, or if one is more serious than another. Both require a gluten free diet. in any case.

[WheatChef]

Gluten intolerance is an autoimmune response to gluten that can affect every major organ in your body as a result of consuming gluten. Celiac disease is simply a symptom of a gluten intolerance manifested in the small intestine. It's a pretty outdated term overall.

[Jaymie Jaymz]

Gluten intolerance is an autoimmune response to gluten that can affect every major organ in your body as a result of consuming gluten. Celiac disease is simply a symptom of a gluten intolerance manifested in the small intestine. It's a pretty outdated term overall.

This is what has me so confused. I just got my results back from Enterolab yesterday. I had an anti-gliadin IGA test done. Anything over a "10" is positive for gluten intolerance. My number was "49." I know some don't believe in using that particular lab for various reasons, but I'm fine with it. It only backs up my symptoms and my reaction to a gluten-free diet anyway.

BUT, why is it any different from Celiac Disease? Both cause the immune system to react to gluten by creating antibodies...

Does gluten intolerance mean that if I eat some donuts or pizza, I'll just feel like garbage for a few days, but no real damage is being done?

And if the antibodies ARE causing damage, then why should just Celiac Disease be taken more seriously by not only the medical community, but also restaurants, family members, etc.?

I apologize for the rant/vent. Though I was mostly expecting a positive result, a part of me was hoping it was all in my head and that it would come back clearly negative. I just don't know if I can be disciplined enough to not eat my favorite foods based on just a gluten intolerance and not actual celiac disease (I already have issues with food as it is. This only exacerbates the problem). I'm considering going on a 3 month gluten challenge and then having a complete celiac panel done, but I don't even know if it's worth it.

[cassP]

This is what has me so confused. I just got my results back from Enterolab yesterday. I had an anti-gliadin IGA test done. Anything over a "10" is positive for gluten intolerance. My number was "49." I know some don't believe in using that particular lab for various reasons, but I'm fine with it. It only backs up my symptoms and my reaction to a gluten-free diet anyway.

BUT, why is it any different from Celiac Disease? Both cause the immune system to react to gluten by creating antibodies...

Does gluten intolerance mean that if I eat some donuts or pizza, I'll just feel like garbage for a few days, but no real damage is being done?

And if the antibodies ARE causing damage, then why should just Celiac Disease be taken more seriously by not only the medical community, but also restaurants, family members, etc.?

I apologize for the rant/vent. Though I was mostly expecting a positive result, a part of me was hoping it was all in my head and that it would come back clearly negative. I just don't know if I can be disciplined enough to not eat my favorite foods based on just a gluten intolerance and not actual celiac disease (I already have issues with food as it is. This only exacerbates the problem). I'm considering going on a 3 month gluten challenge and then having a complete celiac panel done, but I don't even know if it's worth it.

i could be wrong- but this makes sense to me- lately from reading on these forums-> im starting to believe that the antigliadin antibodies are antibodies we make to attack the gluten. & that the ttg & ema are antibodies our bodies make that attack our small intestine & skin (dh & possibly psoriasis & excema).

so- just because you were positive on the antigliadin doesnt mean that it's not as serious as classicly positive celiac! high antigliadin antibodies have been linked to heart disease.. and gluten has been linked to crohns as well. on top of that- we dont get completely genetically screened - so who know what other antibodies you may have that can react to gluten. for example-> i was positive on ema & ttg... so i know i have the autoimmune reaction in my small intestine (plus i have dh). but- on top of that- i just found out that im hypothyroid (probably for the last FOUR YEARS)- anyways- in 2 weeks i have follow up and will ask for the Hashimoto's test- that involves autoimmune antibodies in the thyroid that react negatively from gluten. so- for me that would be a positive check on small intestine & thyroid.

gluten has been a suggested link in so many organ diseases- and you really have no idea what could be affected in your body (besides your intestines & possibly circulatory system).

you should not feel negated in any way. i think Celiac disease is only the "official" tip of the ice berg. you are POSITIVE on antigliadin antibodies- this requires the same 100% gluten free diet- if you were to continue to eat gluten-> it would cause damage & inflammation throughout your body- and you never know what next disease it could trigger

anyways- that's my humble opinion on it right now

plus- on top of that- your ttg could also have been a false negative.

[Skylark]

i was told yesterday, by some with with celiac, that gluten intolerance is not as bad a condition, and i need to know which one i have. from what I've read, i don't see that they are different.

to confuse matters, my gastro. Dr. told me not to worry about my low iga number(52) yet my reg. m.d. is treating me for celiac because of it.for about 10 days i have been eating gluten and dairy free, and do feel much better. not perfect, but a lot better.

Low total IgA is associated with celiac. You shouldn't worry about it as far as general health, but it is probably what has your regular doctor suspicious of celiac rather htan gluten intolerance. Did you have the IgG versions of the tests or a biopsy? That should be done before you are gluten-free.

The relationship between gluten intolerance and celiac is not clear. Some researchers believe gluten intolerance is an early stage of celiac disease, others believe it is a separate condition. I saw a talk by a world-famous celiac clinician and researcher (Markku Maki) who has seen some people in his clinic who are gluten intolerant and continue to eat a full gluten diet eventually develop celiac. It doesn't happen to everyone who is gluten intolerant though. We also can't explain why people with no antibodies, no allergic reaction, and perfectly normal biopsies can still get sick from gluten. Until things are better understood, if you are gluten intolerant you would be wise to stick to the celiac diet.

[WheatChef]

BUT, why is it any different from Celiac Disease? Both cause the immune system to react to gluten by creating antibodies...

Does gluten intolerance mean that if I eat some donuts or pizza, I'll just feel like garbage for a few days, but no real damage is being done?

And if the antibodies ARE causing damage, then why should just Celiac Disease be taken more seriously by not only the medical community, but also restaurants, family members, etc.?

I guess in my brevity I didn't explain it well. What I mean to say is that it's not really different from Celiac disease. The main difference between the two being the presence of blunted villi in the small intestine (celiac disease) or no observance of the blunting. By being specific and relying on this definition for "the real disease" the medical community is kind of acting like a fever is the real disease in a viral infection. Yes the fever (celiac disease in this analogy) will cause excess damage, but it's merely a symptom of the underlying viral infection (gluten intolerance in the analogy) and something that wouldn't have occurred were it not for the original viral infection. By focusing on celiac disease (defined by a reaction in the small intestine) instead of gluten intolerance (possible body-wide reaction) they're kind of missing the forest for the trees as the specific intestinal damage of celiac disease doesn't need to be present for the damage from gluten intolerance to occur in your brain/heart/lungs which I'd say are at least equally important organs.

On that note, if you do eat the donuts or pizza as a gluten intolerance then real damage is certainly capable of being done! Unless you don't consider neurological impairment to be an issue, or possible asthma, or coronary disease.

Celiac Disease is taken more seriously not because it's a more serious disease, or even that it's arguably a separate disease at all; it's taken more seriously because of one of the basic problems with a lot of modern medicine. The medical community is built on the idea that if you can't easily test and observe a problem then it simply doesn't exist. This is great and all if you believe that we as humans have already invented every single biological/medical/chemical/genetic test that ever will be. As far as treatment goes in the medical community many doctors are forced to explain their reasonings behind certain treatments an are forced to use random integers they get back from medical tests to validate their actions.

In the test for celiac disease the "condition" and cause are relatively easy to prove. You shove a camera down someone's throat, look for observable damage, cut off a piece of the intestine and look more specifically at that sample for evidence of damage. Because you're limiting the scope of the test to one specific organ it's so much easier to validate or show the actual presence of an arbitrarily defined measurement of damage. With gluten intolerance being a systemic problem that doesn't react exactly the same in all patients that validation becomes much more difficult. Because you can't just look at one single area in every gluten intolerant person and test for damage to that specific area then according to a lot of people in the medical profession, the condition simply doesn't exist.

I never had the intestinal biopsy to "prove" celiac disease and my TTG numbers were low. That being said I could give a crap less what the medical tests show if I was able to eliminate my schizophrenia, depression, severe social anxiety, asthma, hair loss, poor blood sugar regulation and numerous digestive issues just by eliminating gluten from my diet AND get a flare up of some of these symptoms if I accidentally consume gluten again. At that point who really cares what the tests show or what specific label I'm given, the stuff is toxic to my body and I can't even consume one crumb of it without noticing. Since I normally don't feel like describing in specific detail everything above when I'm out I normally just fake it and say I have "celiac disease", it saves a lot of time and I think it sounds better than "I have a gluten intolerance".

[Jaymie Jaymz]

i could be wrong- but this makes sense to me- lately from reading on these forums-> im starting to believe that the antigliadin antibodies are antibodies we make to attack the gluten. & that the ttg & ema are antibodies our bodies make that attack our small intestine & skin (dh & possibly psoriasis & excema).

That sounds like a very interesting theory. They ought to do a study on that and see if it holds true.

gluten has been a suggested link in so many organ diseases- and you really have no idea what could be affected in your body (besides your intestines & possibly circulatory system).

Good point. With the holidays right around the corner, I just feel they'll give me a hard time because it's not a Celiac diagnosis. I'll be going to the in-laws this year, so that makes it more stressful.

I don't want to suffer any damage to my organs, so that's why I needed to hear again that even with gluten intolerance, it can happen. My grandma died of colon cancer and also had heart disease. There's lots of IBS in the family as well. I'm trying to encourage my immediate family members to get tested. I don't think they take it seriously, though.

I only had the IGA test, so not sure what my TTG numbers would have been. Thanks for replying

[Skylark]

That sounds like a very interesting theory. They ought to do a study on that and see if it holds true.

I believe what Cass was trying to say is that she is personally beginning to understand the role of the various antibodies. What she said is correct and has been shown in studies.

The question isn't that of which antibodies play what roles, but rather whether there are anti-EMA and anti-TTG antibodies in places we aren't measuring. Blood is not the place to look when one suspects antibodies in the intestinal mucosa, skin, or nervous system. It's rather like looking for the keys you dropped in the darkness under the streetlight because it's the only place you can see (Jestgar's wonderful analogy).

I believe from reading literature that we will eventually find more than one kind of wheat/gluten intolerance because it has multiple effects on the gastric mucosa. I don't think it will all boil down to celiac.

[Jaymie Jaymz]

I guess in my brevity I didn't explain it well. What I mean to say is that it's not really different from Celiac disease. The main difference between the two being the presence of blunted villi in the small intestine (celiac disease) or no observance of the blunting. By being specific and relying on this definition for "the real disease" the medical community is kind of acting like a fever is the real disease in a viral infection. Yes the fever (celiac disease in this analogy) will cause excess damage, but it's merely a symptom of the underlying viral infection (gluten intolerance in the analogy) and something that wouldn't have occurred were it not for the original viral infection. By focusing on celiac disease (defined by a reaction in the small intestine) instead of gluten intolerance (possible body-wide reaction) they're kind of missing the forest for the trees as the specific intestinal damage of celiac disease doesn't need to be present for the damage from gluten intolerance to occur in your brain/heart/lungs which I'd say are at least equally important organs.

Brilliant explanation! Thank you for taking the time to go into detail on the issue, which I'm sure many others will find useful, too. I need to print this out for others to read.

I never had the intestinal biopsy to "prove" celiac disease and my TTG numbers were low. That being said I could give a crap less what the medical tests show if I was able to eliminate my schizophrenia, depression, severe social anxiety, asthma, hair loss, poor blood sugar regulation and numerous digestive issues just by eliminating gluten from my diet AND get a flare up of some of these symptoms if I accidentally consume gluten again.

I also suffer from three of those you listed. I would love to see them go away on a gluten-free diet. I'm assuming it might take a while. The severe social anxiety makes no sense to me and has really become debilitating to the point where I avoid going out unless it's absolutely necessary. Even if that was the ONLY thing gluten was doing to me, then I'd be more than happy to give up those donuts and pizza.

[Skylark]

I also suffer from three of those you listed. I would love to see them go away on a gluten-free diet. I'm assuming it might take a while. The severe social anxiety makes no sense to me and has really become debilitating to the point where I avoid going out unless it's absolutely necessary. Even if that was the ONLY thing gluten was doing to me, then I'd be more than happy to give up those donuts and pizza.

I'm another who overcame major mental illness from going gluten-free. I was bipolar and sometimes suffered from panic attacks. The bipolar went away with the diet and some high potency vitamin supplements, and as you expect, it did take a while. The anxiety and insomnia were still sometimes an issue. I never cheated because wheat makes me sick, but I was eating a lot of processed foods like Amy's pizza and trying to eat out too much. When I got really careful this spring and started cooking my own food and only eating at restaurants that have a gluten-free menu and procedures to minimize CC, I stopped having issues.

[Jaymie Jaymz]

Thanks for clearing up the confusion with Cass's post, Skylark. I still have a ton to learn about all of this.

For now, I'll do my best to stick to a strict gluten free diet. I certainly don't want to be sick, anxious, or foggy-brained while visiting family for Christmas. After that, I may or may not try getting the Celiac panel done after a challenge.

[krishna]

They're not the same. Gluten intolerance is a general term meaning that you have issues digesting gluten. Gluten intolerance can cause a number of issues and one of them is Celiac disease (autoimmune disorder). To name few more issues caused by gluten:

-Irritable bowel syndrome

-Inflammatory bowel diseases

-Sjogren syndrome

-Sacroiliitis and inflammatory low back pain

-Rheumatoid Arthritis

-Dermatomyositis

-Fibromyalgia

-Diabetes type I

-Thyroiditis

-Osteoporosis

-Pernicious anemia

-Iron-deficient anemia

-Peripheral neuropathy

-Malabsorptpion causing vitamin deficiencies

[Skylark]

They're not the same. Gluten intolerance is a general term meaning that you have issues digesting gluten. Gluten intolerance can cause a number of issues and one of them is Celiac disease (autoimmune disorder). To name few more issues caused by gluten:

-Irritable bowel syndrome

-Inflammatory bowel diseases

-Sjogren syndrome

-Sacroiliitis and inflammatory low back pain

-Rheumatoid Arthritis

-Dermatomyositis

-Fibromyalgia

-Diabetes type I

-Thyroiditis

-Osteoporosis

-Pernicious anemia

-Iron-deficient anemia

-Peripheral neuropathy

-Malabsorptpion causing vitamin deficiencies

But how do you know whether or not these things are caused by undetected celiac autoimmunity? This is simply a list, not data that explains mechanism.