Confusing reaction to significant gluten exposure

[JosephJW]

For as long as I can remember, I have had GI issues. At various points in my life, I have also dealt with achy joints (in my teens and 20s), bouts of eczema, dental issues, and general fatigue. About 10 years ago, my mom (whose health profile is very similar to mine), told me about a miracle cure – she had stopped eating bread, and then cut out gluten altogether. She was feeling so much better, and encouraged me to give it a try. I did, and I started to feel much better as well. I did some blood work, did a gluten challenge, and even got an endoscopic biopsy. I believe that the blood work indicated that I had a low IgG. The biopsy did not indicate celiac. However, I have remained gluten free for the past five or six years because I was/am feeling better. I am not sure that my GI situation is 100% “normal,” but it is certainly better than before. And when I have been exposed to a little bit of gluten (for example, drinking beer that was brewed to remove gluten; accidentally eating a bite of a granola bar that I thought was gluten free), I generally felt really bad. A doctor told me that some people don’t have celiac, but are gluten sensitive, and that people who are non-celiac gluten sensitive can sometimes have more severe reactions than people who are celiac positive. I figured this was the bucket I’m in.

I’m sharing all this as context for something that happened recently. Last weekend, my wife came home with a bag of a dozen bagels. There was a mix up, and I ended up eating two bagels in one morning that I thought were gluten free, but they were just normal bagels. I was fearing the worst. I was ready to be doubled over on the bathroom floor all afternoon and evening. Then the truly shocking thing happened – nothing. That was more than 48 hours ago, and I feel more or less normal. (I have been a little gassy, but it’s hard to tell if that is a direct result of the gluten consumption.) I almost would have preferred a serious reaction. It would have validated all my discipline over these years. Instead, now I’m just very confused about my situation and the way forward. The only other similar experience I have had was in Europe several years ago. I really cheated, and ate a lot of gluten on that trip. It didn’t bother me much, as I recall. I chalked this up to the way that foods are processed in the United States, versus Europe.

Anyway, I’m curious if anyone has had a similar experience, or if anyone has any advice. I’m not sure where to go from here. I have had many telltale celiac symptoms, but no celiac diagnosis. I sometimes react strongly to small cross contamination, but just had a major exposure that didn’t affect me at all. I feel like I’m in limbo, and would very much benefit from the wisdom and experience of others. Thank you in advance!   

[trents]

Welcome to the forum, JosephJW!

We have had sporadic reports on the forum of people experiencing similar patterns of reaction to gluten exposure such as you describe. Many times these reports have come from people with celiac disease or gluten sensitivity who travel in Europe and are able to eat wheat products without issue. In part at least, this may be due to the widespread use of heirloom wheat varieties for baked goods in Europe. Others have reported being able to eat sour dough bread without issue.

We also get reports of celiacs who seemingly go into remission for a period of time.

One thing I might suggest is that you have genetic testing done to see if you carry one of the genes that make for the potential to develop celiac disease. Now, possessing one or more of the genes does not ensure by any means that you would develop celiac disease because 40% of the population carries at least one of those genes but it not having one of the genes rules out celiac disease. It would not rule out gluten sensitivity, however.

Frankly, there is a lot we still don't know about gluten disorders in relation to the immune system. We regularly are exposed to data (anecdotal at least) that seems to contradict what we have previously concluded and tucked away in our neat little boxes of knowledge. People are all different, including how their immune systems respond.

[knitty kitty]

Welcome to the forum, @JosephJW!

You've done such a good job avoiding gluten, your immune system has calmed down.  If you continue to eat gluten, your immune system will rev up again and make your intestinal symptoms worse.

The immune cells that produce anti-gluten antibodies (these are the same antibodies that also attack our bodies), those immune cells die (off if not triggered by gluten) in about two years.  

If exposed to gluten after that, the immune system has to gear up antibody production again.  This can take a while.   Remember that a gluten challenge is trying to get those antibody levels high enough to register on a blood test and requires weeks of consistent gluten consumption. 

Some people don't eat sufficiently high enough levels of gluten (or long enough) to get their antibody levels high enough for the blood test.  Gastrointestinal and other symptoms can start with as little as 3 grams of gluten during a gluten challenge (two slices of bread), but to get antibody levels high enough for a blood test requires 10 grams of gluten (5-6 slices of bread) consumption consistently.  

Those people that react violently to small gluten exposures still have an actively prepared immune system.  The antibody producing cells are still functioning and readily prepared to produce antibodies.  

You should get a genetic test to see if you carry any Celiac genes.  If you do, you'll know you should definitely avoid gluten.  If not, maybe you just have NCGS.  

Hope this helps!

[LynnRDH]

LindaB

i have experienced a very similar situation. I went undiagnosed for years with doctors attributing my symptoms to IBS & spastic colon. Finally I read a book about Celiac Disease and removed gluten from my diet and began to feel better. My doctor ran blood work and did a breathing test and determined I was possibly celiac. The endoscopy was negative. I have continued gluten-free since 2014. I happen to eat pizza that was from a very good well know restaurant and when I eat that pizza I have no reaction, yet a small amount from any other source is a disaster with me in the bathroom all dsy. 

[trents]

2 hours ago, LynnRDH said:

LindaB

i have experienced a very similar situation. I went undiagnosed for years with doctors attributing my symptoms to IBS & spastic colon. Finally I read a book about Celiac Disease and removed gluten from my diet and began to feel better. My doctor ran blood work and did a breathing test and determined I was possibly celiac. The endoscopy was negative. I have continued gluten-free since 2014. I happen to eat pizza that was from a very good well know restaurant and when I eat that pizza I have no reaction, yet a small amount from any other source is a disaster with me in the bathroom all dsy. 

Going gluten-free for a period of weeks or months before getting tested, either the antibody blood tests or an endoscopy with biopsy will sabotage the testing.

[Scott Adams]

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Lily54]

Hi. I signed up just to respond to your post from months ago! Just because you don’t feel anything doesn’t mean all kinds of bad things are not happening! I hope you already got a similar reply but there are so many i don’t have time to read all of them. Do not eat bread/ gluten even if physically you couldn’t tell. 
i was able/ used to eat bread ALL THE TIME before i finally accidentally got diagnosed. I never felt a thing that made me think bread was a problem. Now that i know i have celiac disease and avoid bread i am mostly better. For instance at last my asthma is practically in full remission. I use less than one asthma inhaler a year as opposed to nearly two a month. I also had other life-altering other symptoms and it was really tragic. It affected everything in my life. Luckily i am naturally cheerful and had a few things going for me because there were so many times i would have been fine dying. I went to all kinds of doctors and all of them missed it for decades. I wasn’t diagnosed for even  15 years after the antibody test was discovered. I lived just kept trying really hard to be normal but underneath i was really struggling with the fatigue and physical symptoms. I carried an Epipen for awhile when prednisone pills has been prescribed 17 times in a year and a half. I was  told they couldn’t do anything else for me. My insurance would get canceled. One time a pharmacist took me to urgent care. I could barely talk. That’s when i was prescribed the Epipen. My symptoms were severe asthma and constant eye nose and throat problems and gynecological and fertility issues. I guess i have just recounted my horrible health history! Well hopefully it will do some good. I was finally diagnosed 10 years ago. My sister found a doc who was willing to start from scratch. Like willing to go through the alphabet. She has good insurance. Within a month he had her tested for various things including autoimmune disease. There it was. Positive celiac test. They did a biopsy. Sure enough. I went back to my immunologist- who i now hate- and she was shocked when the antibody test came back.  Apparently she had decided i had lupus- not that she told me- and was waiting for it to manifest. She had tested at least twice for lupus. She said she did celiac tests all the time when other patients requested them and that they were always negative. So she didn’t bother to test me. I would never have requested that test because from what i knew i didn’t have any celiac symptoms. I remember reading about the disease and thinking i didn’t have any symptoms like that. I only suffer from angst and rage now. I always looked okay and was cheerful and creative. I guess there is a God because my life is fine despite all kinds of stuff. I had plenty of other problems just like everyone else so who needs needless physical suffering? It’s confusing. Keep looking for a good doc. Meanwhile avoid the gluten. 

[Wheatwacked]

Hi Lily54.  Thank you for joining and posting.