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I have Celiac. Unfortunately immunotherapy is not currently done in a way that would make much of a difference for us. Celiac is typically an autoimmune response to Gliadin protein as a result of human leukocyte activation genes HLA-DQ2.2/2.5 or HLA-DQ8. In either case, it is happening at the cellular level for every cell that comes into contact with the protein. The intestines are hard hit mostly because they spend the longest time with exposure. I found for the first year or so I simply could not eat anything made by a restaurant or friend because of cross contamination. My resilience went up over time though, it takes a few years for inflammatory activation to come back down to a subclinical level even if the gut repairs in 3-6 months. Gut bacteria change in response to all the immune activity, but damping the immune response would not necessarily fix the issue of the protein destroying the cells it comes into contact with. The immune response is therefore not entirely autoimmune in nature but necessary to protect the cells. The vili are being destroyed directly, essentially. You could develop a drug that would dampen the immune response (I think a few others posted links) but you could not realistically get to a point where you can eat gluten. The antigen will always destroy your cells, autoimmune response or not. Sensitivity depends on how many (one or two) of the HLA genes you have that react with gluten. I have one out of two so my reactions are less severe (only 2-3 days with symptoms). If you have both Celiac HLA genes, it will always and consistently harm you.

Thanks for this- it sounds like I need to do some more research to completely understand whats going on, but this is very helpful. If you dont mind my asking, are your symptoms mostly GI related? Ive heard others can have symptoms that manifest in things like sinuses getting plugged up or skin rashes. Also sounds like a drug similar to Humara may be something that could provide at least some relief to the immune response.

No. Mine were mostly cognitive. I mean, when I was a kid I had no tooth enamel (had to have surgery to install fake teeth) and puked up everything I ate that had wheat in it, but somehow no one diagnosed it until later. I just assumed it was normal but my symptoms were migraines, anxiety, stomach bloating, joint pain, hair loss, stunted growth, constant fatigue, sleep apnea, nutrient deficiencies, malabsorption. It took about a year to feel better. It used to be cross contamination would mean 3 days of pain, gluten 7 days. Now cross contamination is a worthy trade off for occasional meal out, and gluten is 2-3 days in small amounts. I shudder to consider eating a full bun or something but I haven't tried in years. I know within 10 minutes because the skin inside my mouth peels off. So I kind of have systems for managing it. I have a normal job and would say it has not really hindered me outside of eating a very strict diet. Having support from my partner also helps a great deal. It's good you caught it early.

"I shudder to consider eating a full bun or something but I haven't tried in years."

I have it nowhere near as bad as you (which is why it went undiagnosed until I was 30... although it's still pretty bad). But for about 5 years after I found out I would have recurring dreams where I would be eating a hamburger and realize after swallowing "Oh, crap, that's a normal bun!" I suppose in some sense that might qualify as a nightmare the first couple of times, because it would fully wake me up.

I also have Celiac disease, somewhat less severe than nibstwo, and I also have recurring dreams where I eat something (usually pizza) and midway through realize it is made with wheat dough. This was further compounded when once I ate a package of vegetarian chicken wings (made of wheat gluten) which was mislabeled at the grocery store (gluten free tag on the price label) and next to veggie burgers by the same brand with the same packaging where ARE gluten free and I had eaten before without a problem... I was sick for about a week, couldn't work or think straight. I won't make that mistake twice!

Another funny angle--I also have Type 1 diabetes (diagnosed when I was 9) and for a long time after diagnosis I had dreams about drinking a 64oz soda only to realize it wasn't diet, and panicking since I would probably be in DKA soon after!

Maybe there is some immune system disease/nightmare link that has gone undiscovered :)

Thanks for sharing. Those symptoms sound quite horrific. My daughter had some similar symptoms as well. She had 4 cavities when she was 3. I think she was too young at the time to articulate how she felt but I know she also had some cognitive difficulties(and is only now just getting caught up to grade level despite being a VERY EARLY talker and having a large vocabulary for a toddler)

> The immune response is therefore not entirely autoimmune in nature but necessary to protect the cells. The vili are being destroyed directly, essentially.

Isn't the damage to villi a byproduct of the (auto)immune reaction? I haven't studied it in depth, but what I've read seems to indicate that the damage is caused by inflammatory reactions (as part of the immune response) rather than directly from the prolamins.

> The antigen will always destroy your cells, autoimmune response or not. Sensitivity depends on how many (one or two) of the HLA genes you have that react with gluten.

The gluten is not reacting with genes, but the genes help determine how your immune system responds to the antigen, so it's still entirely an immune response, at least as I understand it.

< The antigen will always destroy your cells, autoimmune response or not.

In regards to autoimmunity, antigens themselves don't destroy cells--antigens only provoke a pathogenic immune response when presented to the immune system.

< Celiac is typically an autoimmune response to Gliadin protein as a result of human leukocyte activation genes HLA-DQ2.2/2.5 or HLA-DQ8. In either case, it is happening at the cellular level for every cell that comes into contact with the protein.

You're not wrong with regards to the celiac, gliadin, and the association with the HLA alleles that you've mentioned. However, I'll point out that those particular HLA genes make up MHC class II proteins. These are the proteins present on what are known as professional antigen presenting cells, a small group of specialized immune cells throughout the body. MHCII proteins present foreign antigen to TH4 cells (helper T cells) which can then activate a larger immune response.

Epithelial cells of the intestinal villi have not classically been thought to be professional antigen presenting cells, and thus should have very small levels of expression. I found one older study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC508181/) that suggests these intestinal villi cells can express class II but nothing since. All of this suggests that the pathogenesis of celiac disease is not as simple as intestinal villi cells expressing high levels of the HLA proteins encoded by the genes you mentioned and provoking a direct immune response--rather, like seemingly every autoimmune disease, the story is much more complicated and likely involves the activation of CD4+ T cells, generation of pathogenic autoantibodies, and a larger network of pro-inflammatory players.

Sorry to hear that - but I understand that Celiac disease it not an immune response in the same manner - so likely any treatment will be different to this - though as ever - probiotics and gut bacteria are worth a try. My wife has celiac disease too, and I really wouldn't worry too much - it is pretty damn easy to eat out now (in the UK, Europe and America at least) - and compared to 10 years ago, she can shop really simply and have high confidence when eating out. We've traveled widely, and it's not been an issue either - as long as you take notes in the language of the country you are going to: http://www.celiactravel.com/cards/

Plus - as horrible as a reaction is nothing compared to an allergic/anaphylactic response from ingesting a known allergen.

You are right, this really is a great time(even though that sounds weird to put it that way) to have a food allergy. I think about even 10-20 years ago how hard it would be to eat gluten free at most places. Thank you for the link- travel is always something we "worry" about. Most of the time we bring an extra suitcase of non perishables that my daughter can eat in case we cant accommodate her diet. Another reason why I love this site, in the 6 or so responses from my post, Ive gotten lots of helpful info. Thanks to all of you!

Sorry to hear about your daughter's healthy issues. For a while I've been dealing with food intolerance issues myself though things are much better now. One working theory I have is to have a high protein diet to build up the the lining of the gut. Maybe incorporate more high quality protein into your daughters diet and see if any improvement. I have no scientific evidence for this, just anecdotal experience... I don't think even doctors have all the answers based on those I dealt with.

Are you familiar with ImmusanT Nexvax2? In a trial to treat celiac.

http://www.immusant.com/patient-resources/clinical-trials.ph...

Thanks for this! sounds very encouraging.

I've had several roommates with Ceiliac, and it can be a challenge, but it's not insurmountable. The biggest problem at first was, quite frankly, laziness on the part of other roommates in not cleaning up after themselves and leaving out a knife or cutting board that had been used to cut bread. It took a couple of talks and clear warning that no, this is not a joke, you will kill her if you continue to do this. We alleviated some of it by just chipping in to buy her a separate, labeled cutting board just for her.

Hardship at restaurants is a common thing, when people are inflexible. I felt bad for her sometimes because her boyfriend would insist on going somewhere he wanted to go, even if she wasn't able to eat anything there beyond a salad. There will probably be more of an emphasis on cooking at home, but, even then, friends and roommates can be part of it if they're just willing to make a few simple tweaks. We even managed to make fried chicken that she could eat just by tracking down a gluten-free breading option.

To boot, she's got about ten years or so before she's out on her own and this becomes her sole responsibility. My experiences are about five years old at this point, and we've already come a long way since then. In 2011, the most widespread "gluten free" option was Chipotle. Now, I see a gluten free menu at pretty much every sit-down restaurant I've gone to.

>From what I've read gut bacteria could be a contributor to gluten intolerance.

It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1. They call it the second brain and just reading about some of the studies should be eye opening to many. For example, some mental health issues can be treated through the stomach and alternatively certain gasterointestinal issues can be treated via the brain.

I recall one of the more interesting studies about twins in (equatorial) Africa where obviously both nature/nurture are identical but 1 twin will be malnurished while the other is not, the only measurable difference coming from the bacteria in the gut, which impacts the ability for the body to absorb nutrients.

Truely sorry about you daughter and it seems you are keenly aware of the social impact of food. However, as someone who has self imposed restrictions it may be a blessing in disguise, because there is a very good chance greater than 10% of her peers will develop non alcoholic fatty liver disease during childhood, some childhood type 2 diabetes, and yet a significantly larger number will develop all kinds of health issues (including mental health problems) not even as of yet connected with food/nutrition. Admittedly, I'll sneak in a cheat meal and can eat at restaurants but most the time, just like most the food in grocery stores, I easily avoid because I view the same as poison. And while it may sound extreme, just look around at the people in the grocery or especially restaurants and honestly come to your own conclusion about the percentage of people who just look unhealthy.

Agreed- and in the grand scheme of things celiac is a completely manageable and minor inconvenience. A lot of how I feel about it is more me projecting my sympathy/pity on her because she is always going to have to think about where/what she eats and how it can impact socializing. Even though she is young she generally has a great attitude about it, and I can even say it has benefitted me as I have become a much better cook by figuring out how to make delicious gluten free cuisine. Obviously rice based dishes are pretty easy, but when you are making fresh breads or things like fried chicken, just substituting a gluten free flour doesn't always come out very well.

> It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1.

Fake news! [1]

[1] https://www.nature.com/news/scientists-bust-myth-that-our-bo...

Ok Donald, the ratio may be off, but your own linked article does in fact conclude microbiobial in the human body outnumbers cells (just slightly) and the study you linked isn't very clear in that it discusses just bacteria which is only part of the microbiome.

Further, the ratio has little to do with the actual function which is the major takeaway. Nice fake account btw!

Edit: from your article, “It is good that we all now have a better estimate to quote,” says Peer Bork, a bioinformatician at the European Molecular Biology Laboratory in Heidelberg, Germany, “But I don’t think it will actually have any biological significance.”

What an odd way of thanking someone for correcting a misconception?

One of my friends in high school had celiac & peanut allergies. The kids / schools were super accommodating, I know everyone is going to have different experiences but I wish you both a good life. I think for him it ended up being more of an issue while young, gaining the discipline to really know & explain to people his condition and how it was important they just know and think about it. On a certain level it creates an interesting dynamic into figuring out if people are really listening & absorbing knowledge, in a weird way it’s probably given him a very unique life experience.

You’re also right to hope for better treatment paths for her future. Compared to even when we grew up the cultural knowledge of celiac is so much better. And since it’s something that’s been discovered to be not nearly as rare as once thought, the research dollars have caught up. These are all signs that point to a bright future :-)

I really wish you and your family well. It can't be easy to accommodate her food habits; although I imagine after a while it becomes an (albeit difficult) habit.

And I agree with her quality of life being affected. Hopefully, other restaurants will catch on, similar to how we label food that may contain peanuts.