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hello, List:

This is a summary of responses to my question about whether gluten produces worse symptoms, faster—particularly vomiting—post-Celiac dx and GF diet than pre-. The question arose because Dr. Green told me a few years ago that there's no good explanation yet for intensified post-dx symptomology, adding that they're looking into "psycho-social causes.' While willing to accept the possibility of psychological causes, the hypothesis does not satisfy.

First, a big thank-you to everyone who took the time to answer.

Interesting, given the fact that questions often pull forty or fifty responses, this one elicited twenty-one. I figured my experience is common, but perhaps "not unusual" is more like it. Celiac and its effects, as we know, are highly variable! Caveat: cannot know from the responses exactly who is Celiac, has a non-autoimmune form of gluten intolerance or has wheat allergy. Also, of course, it is possible for an intolerance or allergy to co-exist with Celiac.

1. Interesting reports about childrens' reactions:

"My son is our Celiac. He was diagnosed at 20 months. If he accidentally ingested gluten, he would (and still does at 13) throw up within an hour. Tell me how a toddler could be having a psychosomatic reaction when he doesn't even know what gluten is and if he's eaten it?"

"I've heard of plenty of celiacs who vomit when exposed to gluten.  Some of them are under four years old and unversed in the ways of hypochondria."

"I can think of several occasions when my children vomited before we figured
out they had accidentally eaten gluten, within a very short time after
eating. (before diagnosis they never vomited - only after many years gf.)
I don't rule out that some cases might be psychosomatic, but I think it can
also be a strictly physiological response."

"Psychosomatic fails to describe a 2 year old's reaction to gluten.  When severe vomiting occurred within an hour of our daughter's ingestion of a bread that was labelled gluten-free, I took the bread to our Celiac Association to be analyzed.  The bread had a high reading of wheat gluten.  It was the same reaction that occurred in our daughter with any inadvertant ingestion of gluten.  With the help of a member of Parliament, we were able to stop the bread from being sold and labelled gluten-free."

2. Four adults reported more severe symptoms, including vomiting, after diagnosis and years on the GF diet, than before. One said, "Every celiac I've ever talked to reported an increase in sensitivity to accidental gluten exposure after they had healed."  

3. Another person reported lessened symptoms. "I was told that at first you will be affected by the symptoms.  Over time you will see less of the symptoms, so you will not be so aware of glutenation. I do see a decline, I think.  It became really severe vomiting, now it seems, at least for now that it is just sharp pains and upset stomach."

4. One person reports having symptoms merely as a result of breathing it in or with skin contact.

> I can even react from glutens in water vapor thru smelling it or by touching glutens!...I often react for instance to women's makeup when they hug me...I have been told I have too many mast cells from being undxed for too long (I had undxed cd for around 49 years).  My skin turns red in reaction to glutens when I touch them.  It happens within 3 to 5 minutes.

5. Two people report becoming ill in response to food they know to be GF.

"I never know when I've been glutened until I get sick...However, I went to a GF luncheon and got sick about 2 hrs later???"

"Before I was diagnosed ( biopsy & bloodwork confirmed ) I never felt nauseated. But now... It seems to be daily. Even eating things I KNOW are GF. I hate it. I feel terrible. I felt terrible before physically and now that's better, but the nausea is just as bad." 

6. Another person suggested it's a matter of comparison. 

"I felt miserable all the time when I was eating gluten.  When I went GF, I no longer felt like death all the time.  Now when I have gluten, the contrast between how good I feel off gluten and how dreadful I feel on gluten is stark."

7. And still another spoke about becoming nauseous in reaction to fatty foods. That reaction (the literature says) is not uncommon among Celiacs and the gluten intolerant.

Thank you again, everyone.

Mary B.
NYC



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