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Celiac genes & risk reduction

Answered on August 19, 2014
Created July 06, 2013 at 3:44 PM

I've been researching celiac disease a ton over the past few days since getting my 23andme results back. It's a very confusing tangle of genes, but it looks like I'm heterozygous for the "celiac genes", both HLA-DQ2 (2.5, but not 2.2) and HLA-DQ8. These haplotypes are quite common (~20-30%), and everything I'm reading says there is no reason to do anything if you test positive for them in the absence of family history or other risk factors.

However! If I'm at increased risk of celiac (3.77x average according to 23andme), it seems that acting to further reduce my risk makes sense. I'm also at increased risk of several other autoimmune diseases (celiac is strongly associated with several autoimmune diseases). Apparently, my genes produce proteins that bind more readily to gluten, increasing the odds of an immune response. It follows logically that cutting gluten out would reduce my risk of developing celiac, as well as other autoimmune disorders. I think many paleo eaters would consider avoidance of leaky gut ---> autoimmune diseases as one of the primary reasons they cut out certain foods, chiefly grains.

I have eaten 80/20 primal for the past three or four years. I have never cut wheat out completely, except during 2 Whole30s, after which I noticed no significant ill-effects from reintroducing wheat (or anything else, thankfully). A couple of years ago when I had inflammation in my knee, wheat made it hurt more. Currently, I eat wheat 2-4 times a month, always when eating out or at a party. It doesn't seem to affect me if I eat a small amount. Eating a lot will make me bloated and give me brain fog, but that also happens when I binge on gluten-free crackers (I recommend you never try Nut-Thins with Kerrygold butter - it's like crack).

My question is: now that I know my risk is increased, should I cut out all gluten? I know the short answer is yes, but it's a pretty big hassle to be that guy interrogating potluck guests and waiters about ingredients to avoid trace gluten exposure. I don't want to overreact and drastically change my lifestyle if its unnecessary. I'm a pretty healthy person with no noticeable immune issues.

7dab2d8c97e44d8d0c298e5c9d5d75bc

(641)

on July 07, 2013
at 03:27 PM

Yeah, I guess part of what I can describe after no wheat is that I didn't really know what I was supposed to feel like, until I felt better, and I'm wondering if you'll experience the same thing.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:56 PM

Interesting! I've never seen a direct-to-consumer celiac test at a pharmacy. I eat gluten rarely enough that any testing would probably be negative.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:49 PM

I doubt my doctor would test me, since I have no symptoms and no family history. I would be very surprised if I tested positive anyway. I'm mostly interested in reducing my risk of developing celiac or another autoimmune condition by compromising my gut lining.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:44 PM

No, I don't have a shellfish allergy or any other allergies, and I don't seem to be very sensitive to any particular food. I do feel yucky if I eat a bunch of junk, but I think that's more of a reaction to lots of carbs than to any ingredient (although I can eat lots of sweet potato or fruit without feeling bad.... hmmm). I used to get canker sores in my mouth quite often, and since cutting out grains I get them very rarely. I saw those listed as a possible celiac symptom. But in general I'm pretty darn healthy.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:37 PM

I don't have any relatives with diagnosed celiac disease, but my sister has some weird autoimmune stuff going on, as well as some undiagnosed brain/mental changes. I don't know if she's had testing for celiac (she has had lots of testing) but I'm going to find out.

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4 Answers

1
7841848bd0c27c64353c583fb7971242

(7275)

on July 06, 2013
at 08:08 PM

Do you have any relatives with celiac disease? I personally think it's a good idea to get tested before going gluten free, as many people are asymptomatic. I think most doctors aren't keen to test you unless you either have symptoms of celiac disease or a relative with celiac disease.

In my case, I went gluten free for two weeks, had a small dose of gluten and got very sick from it, and then went to see my doctor, who then gave me the test (it came back positive). But I wish I had done it before even going gluten free in the first place.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:37 PM

I don't have any relatives with diagnosed celiac disease, but my sister has some weird autoimmune stuff going on, as well as some undiagnosed brain/mental changes. I don't know if she's had testing for celiac (she has had lots of testing) but I'm going to find out.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:49 PM

I doubt my doctor would test me, since I have no symptoms and no family history. I would be very surprised if I tested positive anyway. I'm mostly interested in reducing my risk of developing celiac or another autoimmune condition by compromising my gut lining.

1
7dab2d8c97e44d8d0c298e5c9d5d75bc

(641)

on July 06, 2013
at 07:31 PM

Honestly, I think by not cutting out wheat, you are putting yourself at risk for celiac/other autoimmune diseases. I have celiac disease, and I didn't know about it.

At the very least, I would eat gluten free breads and limit exposure. Most restaurants, I order a steak and vegetables anyways, so I just ask them to fry stuff in butter/use no flour and they're pretty ok with that. It gets easier to be "that person". I have it down to about an extra minute on my order by simply stating "Plain vegetables, steamed. Plain meat please- no special sauces. No cross contamination with shellfish, as I have a deadly shellfish allergy". Speaking of which, do you have a shellfish allergy? That's a marker for a wheat allergy! Also, there is such thing as silent celiac disease- mine showed up as ankle inflammation, many skin issues, anemia/nutritional deficiencies, and idiopathic hematuria. Interestingly enough, going gluten free, not too much changed digestively. However, now if I eat it, I will get diarrhea and stomach issues.

7dab2d8c97e44d8d0c298e5c9d5d75bc

(641)

on July 07, 2013
at 03:27 PM

Yeah, I guess part of what I can describe after no wheat is that I didn't really know what I was supposed to feel like, until I felt better, and I'm wondering if you'll experience the same thing.

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:44 PM

No, I don't have a shellfish allergy or any other allergies, and I don't seem to be very sensitive to any particular food. I do feel yucky if I eat a bunch of junk, but I think that's more of a reaction to lots of carbs than to any ingredient (although I can eat lots of sweet potato or fruit without feeling bad.... hmmm). I used to get canker sores in my mouth quite often, and since cutting out grains I get them very rarely. I saw those listed as a possible celiac symptom. But in general I'm pretty darn healthy.

0
Bcb2f5436d11467e89123680c046b858

(1356)

on July 11, 2013
at 06:10 PM

Okay, after more research, I think I've managed to answer my own question. The information was not easy to find - there is very little on prevention of celiac disease, except with reference to infants. Most consumer-level references I looked at said that celiac could not be prevented, since it is genetic. I disagree.

It takes 3 conditions for celiac to occur: genetic susceptibility, gluten in the diet, and intestinal permeability (leaky gut). I can't change my genes, but I can control what I put in my mouth. I can avoid gluten, as well as other foods which increase gut permeability.

I also had a question about whether the effect of gluten was dose-dependent for someone who does not yet have celiac, and I think the answer is yes. I found this article, which concludes that "Quantity matters: the higher the level of gluten presentation, the higher the chance to develop CD. Reduction of gluten intake may thus be an effective approach to prevent or delay the development of CD".

At this point, I think my plan is to cut out wheat entirely, but not worry about trace amounts of gluten in other foods. With a DQ2.5/DQ8 haplotype, my risk is 14 times that of the general population (I'm not sure how 23andme comes up with the 3.77x estimate), so I think taking action is warranted, but I don't think I need to be as strict as I would be if I developed celiac.

0
7a6529ea25b655132fe58d793f95547a

(2030)

on July 07, 2013
at 01:07 AM

I had about the same risk I think. I wasn't sure either, so I did a home test from my local pharmacy. It turned out negative and the test was pretty easy, and fairly accurate from what I've read. The only downside was the price, I think it was around seventy bucks or so.

http://www.rexall.ca/services/biocard-celiac-test-kit

Bcb2f5436d11467e89123680c046b858

(1356)

on July 07, 2013
at 01:56 PM

Interesting! I've never seen a direct-to-consumer celiac test at a pharmacy. I eat gluten rarely enough that any testing would probably be negative.

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