Symptom Differences Gi Vs. celiac disease

[lcarter]

I am throwing these questions out for discussion, because I can

[Lisa]

I will agree with you that the diagnostic envelope for Celiac Disease is far too narrow.

[YoloGx]

I have often wondered the same thing. My take on it has been that celiac indicates an auto-immune reaction to gluten whereas gluten intolerance is an allergic reaction. I agree however that its often difficult to tell the difference.

Where in my opinion there may be a difference is in cross contamination (CC). I may be wrong, however CC seems to be less of a problem for those that simply have a gluten allergy once that person has gone off all trace glutens. It would be interesting to hear from those who are supposed to not have celiac but instead simply have gluten intolerance to find out if what I suggested is true or not.

Bea

[YoloGx]

I also want to add that some of us are so far gone that we have trouble if we eat any grains at all...though glutenous grains are by far the worst.

[Lisa]

Here is some light reading , on the complexities of Celiac Disease:

Open Original Shared Link

[momxyz]

actually, wheat allergy is something different from gluten intolerance.

Gluten intolerance is estimated to affect as many as between 20 and 30% of the population, to varying degrees. Celiac Disease is a subset of Gluten Intolerance with more defined (tho perhaps too narrow) parameters for diagnosis.

here are some additional references

Open Original Shared Link for Non-Celiac Gluten Intolerance

this one is a power point. It gets technical but the beginning slides should be useful.

this one is a You tube and it is great. Conventional doctors, who specialize in Celiac, but recognize non Celiac gluten intolerance as a real entity. Its a whole conference and it is long, but at least watch the first presentaiton.

[CMG]

I had a negative biopsy after a gluten challenge, and the only blood work I ever had done was after I had already gone gluten free. I still have severe reaction, both intestinal and otherwise, if I have even trace amounts of gluten. I also am sensitive to dairy.

According to my doctor, gluten intolerance also is an auto-immune condition, not an allergy. His view is that there are a lot of false negative biopsies due to the size of the small intestine (equivalent area to that of a tennis court!). Also, people with gluten intolerance might be experiencing damage/inflammation to the intestinal walls rather than the villi. Gluten intolerance also can cause inflammation to other parts of the body, which would explain associations with things like rheumatoid arthritis and various neurological symptoms. (I also have rheumatoid arthritis and sjogrens syndrome, both of which have improved significantly since going gluten and dairy free.)

This is just my basic understanding, but I hope it helps.

[lcarter]

All of you have some interesting comments and web sites. I really appreciate the feedback. But, still can't help thinking GI is really just a wrinkle of celiac disease, and that it will become obvious after more research is done and more accurate screening tests are developed. [Remember that doctors only "practice" medicine, they still haven't perfected it yet! ] It seems like so many times it is said that the blood work is negative or inconclusive, the biopsies negative [affected by number and luck of taking samples from diseased sites, and/or ability and thoroughness of the lab reading the samples], yet the diet is very obviously positive. So, the patient is still considered to have celiac disease. It seems like I particularly see this coming from other countries. Is it my imagination or is the idea of GI more a US thing and not so recognized, for instance, like in Europe? Meanwhile, I am still wondering what symptom differences, if there are any, GI patients have in comparison to celiac disease patients. I'm betting there aren't any differences at all, with both groups showing a similar gamut of differing reactions to gluten. The medical literature also says that the extent of damage seen by biopsy does not correlate with the severity of the symptoms. That, in and of itself, says a lot. Much of what I read also says that after all is said and done, the final test is the gluten-free diet itself. So, the patient's improvement on the diet is the final proof of celiac disease. To me that seems to negate the idea of GI altogether. Anyway, it will be interesting to see how this all pans out over time.

[momxyz]

  lcarter said:

But, still can't help thinking GI is really just a wrinkle of celiac disease, and that it will become obvious after more research is done and more accurate screening tests are developed. .... Meanwhile, I am still wondering what symptom differences, if there are any, GI patients have in comparison to celiac disease patients. I'm betting there aren't any differences at all, with both groups showing a similar gamut of differing reactions to gluten.

Technically, according to the references I posted, the difference between celiac and GI is that with celiac disease you will have villous atrophy. For better or for worse, that is the currently accepted medical definition.

That being said people with non celiac GI can and do share many of the same manifestations that celiacs do. But its really an array of symptoms; not everybody experiences exactly the same problems, to the same severity. That is true for people with celiac disease as well as nonceliac GI.

[no-more-muffins]

I think that 1. Actual intestinal damage can often be missed by doctors if it is not obvious enough and 2. Just because someone doesn't have villous atrophy it does not mean that they do not have a significant decrease in the function of the actual cells of the intestine. Just because they can't SEE atrophy does not mean that the function of the intestine isn't compromised. Since so many of the symptoms of "simple" gluten intolerance involve malapsorption of nutrients, one would have to say that there is something functionally going on in the intestines to prevent optimal absorption and digestion, atrophy or not. And everything that I have read pretty much says that the symptoms of celiac and G.I. are really the same, minus the villous atrophy. There are SO many people on these boards who were told they don't have celiac. But we are all here, and we all improve when we don't eat gluten.

Personally, I think villous atrophy is a symptom of gluten intolerance, but it isn't the disease. I really think it should not be defined that way. Either they are going to have to broaden the definiton of celiac or they are going to have to come up with another category for G.I. For every true celiac out there there are a LOT of gluten intolerant people. It does make explaining things to other people difficult. When people ask me if I have celiac, I dont' know what to say. No, I do not have villous atrophy, but I am gluten intolerant, which is what most people think celiac means. It is all very confusing.

[momxyz]

hi no more muffins

(Love the name)

"Either they are going to have to broaden the definiton of celiac or they are going to have to come up with another category for G.I. For every true celiac out there there are a LOT of gluten intolerant people. It does make explaining things to other people difficult."

I don't disagree with your sentiments about the imperfections that exist with the current diagnostic schemes. But like I said, for better or for worse, what most of the medical "establishment" accepts is that celiac=villous atrophy. It ain't great, but it is what it is....

"Non-celiac gluten intolerance" is that other category, and I agree, there are a lot more people that are affected by this. Did you check out the references I posted on 9/1 on this threat? (A power point and a you-tube). These two physicians, while ascribing to the current diagnostic definitions, clearly view non-celiac gluten intolerance as a significant disease state, and espouse the benefits of a gluten free diet for anyone affected.

But like you said, all this is difficult to explain to other people, and I have recently struggled with this in a family/social setting.