Should I be tested for celiac disease?

November 28, 2007 2:08 PM

Who should be screened for celiac disease? And what would that entail?

I've been wondering lately if some members of my family, including myself, should be screened for celiac disease. My reasons include:

1. We seem to be ridiculously predisposed to autoimmune conditions. I have one, my brother has one, my grandmother, my great-aunt, that great-aunt's son, and another cousin on that side of the family all have some sort of autoimmune disease. I have read that there seems to be a link between celiac and other autoimmune diseases.

2. My brother, who has psoriasis and psoriatic arthritis, also has a bunch of free-floating ailments which have been diagnosed as fibromyalgia and irritable bowel syndrome. I feel like those are very often misdiagnoses for celiac disease.

3. I had a bone scan right after my 30th birthday, and it showed that I had osteopenia, a precursor condition to osteoporosis. This was attributed to the fact that I'd been on prednisone, but I know that celiac is associated with osteoporosis. I've also got some other symptoms that make me a little suspicious: chronic low-level iron deficiency, for instance, and a mysterious rash that my doctors have given up trying to diagnose. The rash didn't respond to prednisone, and my doctors don't think it's related to my autoimmune problem.

I raised the celiac possibility with my rheumatologist, and she didn't seem to think it was very likely. But I'm wondering if I should push harder, and especially if I should encourage my brother to look into it. Does anyone know if there are guidelines about who should be screened for celiac disease? And what exactly does "screening" mean? How does one go about convincing a doctor to consider the possibility that one has celiac disease? Does anyone know of any good, reliable articles that I could send to my brother to convince him that he should look into this?

I know you're not my doctor, but I'm just looking for general thoughts. Thanks!

posted by craichead to health & fitness (13 comments total)

Noting your username, craichead, it might interest you to learn that Ireland is considered the coeliac disease capital of the world. So if your genes match your handle, that's a good reason to get screened.
posted by tiny crocodile at 2:26 PM on November 28, 2007

This case history seems to indicate a bloodtest is what you need, possibly followed by an endoscopy to confirm (obviously IANAD).
posted by tiny crocodile at 2:29 PM on November 28, 2007

Heh. They don't. I'm 100% Ashkenazi Jewish. I just happen to be an Irish music fan.
posted by craichead at 2:29 PM on November 28, 2007

You could always try switching to a celiac diet and see if your symptoms improve. I know that's pretty drastic but it could prove your theory right or wrong.
posted by Octoparrot at 2:30 PM on November 28, 2007

Drat. It was a decent guess! Still, there seems to be lots of stuff online about the trials of getting diagnosed - much of it with the UK/Ireland spelling: "coeliac".
posted by tiny crocodile at 2:32 PM on November 28, 2007

My GP wants to screen me (and will, now that I'm getting health insurance) because I have a family history of Crohn's and slight anemia. Maybe your GP would be more amenable to at least letting you get the bloodwork done.
posted by cobaltnine at 2:40 PM on November 28, 2007

You could always try switching to a celiac diet and see if your symptoms improve. I know that's pretty drastic but it could prove your theory right or wrong.

A good suggestion, but can be difficult to practice cold turkey, if you're not already looking for unsafe ingredients in the food you buy.

For best test results, you'll need to give up eating out, as well as eating anything with: flour, refined flour, wheat, wheat gluten, barley, oats (controversial, but for testing, just to be safe, you want to avoid it), food starch, modified food starch.

Sauces will be out, almost always because flour is used as a flavoring and thickening agent. Pasta is out. Pizza or any (wheat) bread-based food is out. Beer and any wheat-derived liquors are out.
posted by Blazecock Pileon at 2:47 PM on November 28, 2007

If you do try a gluten free diet this blog has recipes as well as personal anecdotes http://glutenfreegirl.blogspot.com/
posted by estronaut at 2:58 PM on November 28, 2007

I'm 100% Ashkenazi Jewish. I just happen to be an Irish music fan.

Fellow inbred member of the tribe over here, and I have celiac disease, though no one else in my family seems to have it. A simple blood test performed at my gastroenterologist's office did the trick; he was about to write me off as yet another whiny woman with vague tummy and fatigue symptoms -- was seriously about to doom me to "oh, you just have IBS or something, go take these muscle relaxants every time your stomach hurts, and get more sleep" hell -- until the antibodies showed up on the test.

Some people like to follow up the blood test with a biopsy of the lower intestine, but that's pretty much overkill; all I followed it up with was an elimination of gluten from my diet, which resulted in my feeling much, much better within about six weeks, thus proving the test results were accurate.

And I too had the weird rash, only it manifested as resistant-to-treatment cystic acne. Cleared right up when I went off the wheat.
posted by Asparagirl at 3:21 PM on November 28, 2007

One of my relatives was recently tested. The first step is a blood test. It is not a definitive test, but will let your doctor know if further tests are needed. If the blood test is positive, then there's a biospy of your intestines, which is the definitive test.

My relative was told NOT to begin a gluten-free diet until all testing had been completed. If you go gluten-free before the biopsy, the problems celiac causes in your intestines can heal, which will cause the test to give a false negative.

In the end, she doesn't have celiac, which shocked her doctor. If she had tested positive, he would have recommended that her children be tested as well.

Good luck!
posted by xsquared-1 at 3:22 PM on November 28, 2007

My family all started eating gluten free about a year ago as my mom got microscopic colitis twice, which really messed her up (currently she can eat dates, mangoes, bananas, and rice noodles). Because of this, my mom (a doctor) has done a lot of research into celiac disease and food sensitivities in general. First of all, it's really not as uncommon as you might think.

I would say the first step is definitely to get the blood test done. There are three antibodies that they test for. Everyone in my family tested positive for one of them. However, my mom and brother were both biopsied and did not test positive for celiac from the biopsy. However, we are feeling better now that we are off gluten. Personally, I don't notice much difference to how I feel every day, but I will spend most of the night on the toilet after I eat gluten by mistake. Also, the way they decide whether you have a high level of antibodies is purely based on standard deviations, so if your antibodies are raised, but not enough to test positive, you still might want to consider eating gluten-free.

After you've been tested, I would encourage you to try eating gluten free. It's really not as hard as you might think. Well, it's hard if you're trying to eat out, but while you're at home, rice, potatoes, vegetables, fruit, meat, beans, dairy, and eggs are all in, so there's lots of potential for a month or two test run.

Disclaimer: some of the research my Mom has been doing is a bit radical, so your doctor might not agree with what she has to say. However, even if he/she won't test you, or tells you you don't have celiac, you could try the diet for 6-8 weeks to see if you notice a difference. You should be able to tell if you're feeling better or not, even if you don't have an official diagnosis.
posted by carolr at 6:10 PM on November 28, 2007

it sounds like your brother should be screened for celiac. since you don't have any symptoms besides one that is easily explained by something else, you probably don't need to be, unless you really want it for peace of mind. however, you might try to go gluten-free for a while and see if it helps.

i wonder if even just cutting down on the gluten would help? i don't know if it's an all-or-nothing deal or not.
posted by thinkingwoman at 6:24 PM on November 28, 2007

It can't hurt you to get screened so go for it, or at least tell your GP and see if you can get a referral to a GI doc.

My GI doc said the endoscopy + biopsy was the gold standard. I asked for the blood test but got that instead. Apparently I don't have it but I'm still not so sure. I heard that if they happen to biopsy an area that isn't affected, they can wrongly think you don't have it. I'm sporting the rash too and the intestinal issues clearly linked to wheat/etc. consumption, so I just wonder.

I can report that all of the gluten-free beers suck. :(

Shalom, boyo.
posted by kookoobirdz at 9:47 PM on November 28, 2007