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Old 04-26-2006, 08:35 AM   #1
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Celiac disease question

I have seen celiac disease or gluten sensitivity mentioned a few times on these posts. The symptoms of cd seem to overlap those of hypothyroidism, so I am wondering since I still don't feel well if I should investigate celiac disease. I don't know much about screening tests for this, though. I had the following test done which was included in a saliva test for cortisol and thyroid hormones: Thyroid Microsomal Ab, SIgA. It was negative (which was normal). Since it mentioned SIgA, is that an indicator of celiac disease? Would that mean that I most likely do not have celiac disease and would not need to pursue this any further? What is SIgA, anyway?

If this is not a good indicator for celiac disease, are there any reliable self-order tests to detect this? I do not have insurance and definitely cannot afford the high price mark-up that comes from doctor's offices and their labs.

 
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Old 04-26-2006, 11:09 AM   #2
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Re: Celiac disease question

Celiac disease is an autoimmune reaction to gluten in wheat and certain other grains. in a textbook case, it causes diarrhea and weight loss, and sometimes a blistering skin rash known as dermatitis herpetiformis. Intestinal biopsy shows changes in the small intestine that are reversible by strict adherence to a gluten-free diet. People with celiac disease are at increased risk of developin Type I diabetes and thyroid disease - that risk may go down if they stick strictly to their diet.

Not all people with celiac disease have the "textbook" symptoms, though, and studies suggest there are a lot of undiagnosed people out there, as looking at banked blood we see 1/200 or 1/150 people may have it. Lots of people out there with "irritable bowel syndrome" or recurrent canker sores in their mouth may actually have undiagnosed celiac disease. Among thyroid patients, the incidence of celiac disease may be higher, like 4-5%.

Blood tests can screen for it. Anti-gliadin antibodies are sensitive but not too specific - meaning they can give false positives, not everyone who tests positive necessarily has celiac disease. Anti-endomysial or anti-ttg antibodies are more specific - that is, if you test positive you almost definitely DO have celiac disease - but less specific, meaning they can miss some cases. If a blood test is positive, a GI doc will usually do an intestinal biopsy to confirm the diagnosis. You should NOT be on a gluten-free diet when having your blood tested, as that might cause your antibodies to temporarily go away and not be detected.

You can probably get these tests done yourself at healthcheck USA.

SIgA is probably salivary immunoglobulin A. Some celiac patients are deficient in this class of immunoglobulins, and that can cause a false-negative on antibody tests which measure only IgA antibodies. If your result was not abnormally low, then you should have a normal level of IgA, and the tests should be accurate for you.

Ellie

 
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Old 04-26-2006, 02:45 PM   #3
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Re: Celiac disease question

Ellie,
My SIgA test did not show numerical values; it just said "Negative," but it was on the same line as Thyroid Microsomal Ab. Do you think I should get tested? I have gas frequently, muscle and joint pain, always tired, etc. I have had somewhat of a runny nose forever. It never seems to go away like a cold would. I have been diagnosed with irritable bowel syndrome about 16 years ago when I had diarrhea a lot. However, I don't know if I was having hyperthyroid episodes then, or if it was lactose intolerance, or what. A little later I connected some episodes to milk so I started taking Lactaid pills. I almost never have diarrhea now, although about six years ago I remember having periodic bad episodes that could not be blamed on lactose intolerance then since I always took lactaid pills.

Celiac disease is linked to autoimmune hypothyroidism, but could it cause (or be associated with) hypo without thyroid antibodies? I don't test positive for any thyroid antibodies, so I have no clue why I am hypo. I feel like I am on a wild goose chase to find out why I feel so badly, and nothing ever seems to be the answer and just costs more money.....

Healthcheckusa does a celiac genetic test which looks for the specific genes that cause it. It costs over $300 to get done, and it does not involve any IgA antibody testing at all. I hate to spend that much, but is that a better test? I saw an at home test that costs $99 that tested for the antibodies, but I don't know about its reliability.

I just feel like everything I do or try is pointless. The last time I went to the doctor, he was clueless and said that Armour usually helps his patients get energy by now (been over 4 1/2 months), and Cortef does the trick if there are adrenal problems. However, even a small dose of Cortef made me so dizzy that I stopped taking it after 2 weeks. The dizziness went away immediately the day I stopped taking it. I am trying licorice root tea now (for adrenal fatigue), but I think it may be making me feel more gassy and bloated, or it's a coincidence that I am just more aware of feeling that way now.

What do you think?

 
Old 04-26-2006, 03:55 PM   #4
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Re: Celiac disease question

Gene tests are spendy. The frequency of one of the main genes for celiac, DQ2, is 1 in 3. Since not everyone with the gene has celiac (that would be 1/3 of the population), the test really gives information about a certain type of genetic predisposition to the disease.

To complicate things, there are documented cases (not common) of individuals with all of the gut findings (flattened villi, lymphocyte infiltration, etc.) of celiac who do not have either of the main genes for the disease.

A further complication is that not all cases of gluten intolerance shown to resolve with gluten-free diet, have the "gold standard" endoscopy findings. That is, there are many cases of gluten intolerance that are sero-negative and/or biopsy-negative. These are not celiac disease, but they are a type of gluten intolerance.

Should you decide to get gene testing done, Enterolab does it for $150, but they have other state-of-the-art tests that, IMO, may give you more information.

A less expensive route, which many people try, is to do a gluten-free diet for at least 6 mos., and see if they feel any better. But a couple of things about that:

1) If you need/desire medical documentation for celiac disease, you need to get testing first, as Ellie has explained. Else you end up going back onto gluten for several months before testing.

2) A gluten-free diet is unlike any other diet out there. It is 100%, 24/7. Few people are prepared for the rigor, the expense, the inconvenience. Having said that, once you're over the steep learning & adjustment curve, it becomes second nature like anything else. If you are interested in doing a dietary elimination of gluten, I highly recommend you read about what you are getting into. Check your public library for anything written by Dana Korn. She's written several great books on this topic, most recently Gluten-Free Living for Dummies (part of the dummies series). I haven't previewed that one yet, but it's probably a great starting point.

Best wishes.

 
Old 04-27-2006, 10:12 AM   #5
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Re: Celiac disease question

I would never be able to go gluten-free without knowing for sure that was my problem. The lifestyle changes would be so dramatic that my family would never go along with it unless they knew that was my problem. I don't think they would be supportive for something that might or might not work and we wouldn't know for 6 months! I don't even cook all the time now because I am so tired...I would have to cook from scratch most everything I eat, and my family might eat different things than me, etc. Going out would be hard, and most everything we buy from the store has gluten in it. And the extra expense....But I would do it, and I know my family would help me, if I was 100% sure that I had celiac disease.

So, maybe I should try one of the tests from Enterolab. Which is the best for the money? I sure hope it is conclusive. It turns out that my dad has had allergies to practically everything when he was growing up. Some of those allergies persisted until he was a young adult. He doesn't really remember the details of everything now, though. He said he was allergic to wheat and corn, among other things, and he missed a lot of school then. I suppose they said he "grew out of it" because he eats everything now and says he has no problems. I asked how they knew he was allergic to those things, and he said they tested him for that. Perhaps there is a connection to me and my problems... Is being "allergic" to wheat the same thing as being gluten intolerant, or can there be another type of allergy to it?

 
Old 04-27-2006, 03:43 PM   #6
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Re: Celiac disease question

One can be allergic to other proteins in wheat, but gliadin/gluten is probably most common. My son has "gluten allergy" with bang-up IgE responses to wheat, barley and rye. Only those grains, with the one common protein: gluten. He was excessively gassy & constipated from birth,had pediatric migraine, etc. which all disappeared after gluten was removed from his diet.

Yes, you could say that wheat allergy or gluten allergy is one form of gluten intolerance.

Do you have a general tendency towards allergy at all? Hay fever, etc? If so, perhaps your money would be better spent seeing an allergist for standard IgE allergy testing. Sometimes allergic predisposition also runs in families.

Enterolab does stool antibody testing, which is controversial. Never the less, their approach has helped many people. You can get tests for gluten as well as other common food intolerance triggers, like dairy, egg, & yeast. Most health insurance won't cover Enterolab testing unless ordered by a doctor.

Celiac disease is only one of many autoimmune diseases associated with thyroid problems. It may be worthwhile pursuing diagnosis if there is a family history of gut problems, or if one has anemia plus gut problems.

Best wishes.

 
Old 04-29-2006, 01:15 PM   #7
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Re: Celiac disease question

I have Hashimotos, and before that i had no idea i was allergic to gluten, but turns out i am. Had food allergy test done through Meridian Labs in Washington, US. Gluten was skyrocketed. now i think of it, i always had loose stoole and heartburn when i ate bread and stuff. but now i dont eat any gluten at all. Fun!

scott

 
Old 04-29-2006, 02:24 PM   #8
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Re: Celiac disease question

My understanding of celiac disease is that it's an autoimmune response to gluten that causes the antibodies to attack the cilia of the small intestine. People with this not only have to avoid wheat but ALL foods that contain gluten.

A wheat allergy is an immune response to the wheat; the body does not attack itself. People with a wheat allergy can usually still have other gluten containing foods.

Of course people can have both .

It's good know which you have though if it's going to dramatically change your diet. Avoiding wheat is not very difficult...avoiding gluten greatly limits your choices.

Celiac disease requires a lot of research into the origin of foods. For example, you wouldn't think that some vinegars, baking yeast, yogurts, alcohol and cheeses contain gluten but they can.

Kelly

 
Old 04-29-2006, 04:18 PM   #9
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Re: Celiac disease question

exactly, basically i eat no processed foods. el natural, that way you know exactly what your putting in your body. it can be a pain sometimes but i never knew i liked healthy food so much before i found i was allergic to gluten.

scott

 
Old 04-29-2006, 09:24 PM   #10
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Re: Celiac disease question

SCO24, my family and I are finding that out right now. I thought it'd be a TON more work and no one would like it but we're finding there are a lot of things we really like. We haven't gone 100% gluten-free yet but we're getting there (I didn't want to shock my family ).

I don't know if any of us have celiac disease or not but I can't afford to have us all tested either (I have 5 children). It's easier for me to remove the foods for several months and see how they do.

If we find we feel better eating this way we'll stick to it. No one is deathly ill but they all have issues that seem to be related to what they eat. Even if they didn't it's just easier to do it as a family rather than one or two of us.

We're eliminating dairy too since I KNOW they have allergies and sensitivities to it. Most of the kids don't even like dairy products so that hasn't been a problem.

The food preparation does take quite a bit of time but I am blessed to be a SAHM who homeschools. We just do it together and call it "cooking class" .

I think once I get used to the recipes and ingredients it won't be as much work. It'll be easier too when I learn what can be substituted for the gluten-containing products.

Kelly

 
Old 04-29-2006, 11:09 PM   #11
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Re: Celiac disease question

Yeah it does get easier. I have been doing it now for about 7 months. i started eating oats because i thought they didn't have gluten but apparently they do, or rather there is no garauntee they dont. but i know buckweat, millet, and quinoa ( i think thats how you spell it) don't have gluten, but baking is another story. for pasta you can have rice or corn , which is surprisingly good.

also, in the case of autoimmune disease, studies were finding that diets without gluten, dairy, refined sugar, etc., had very low cases of autoimmune, so that would be great for your kids.. i wish i did that growing up, maybe i wouldn't be where i am now.

scott

 
Old 05-02-2006, 12:16 PM   #12
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Re: Celiac disease question

I have read about IgE antibodies to wheat (immediate food allergy), IgG antibodies (delayed food allergy), and IgA antibodies (in celiac disease). They all seem to have different tests, so I don't know which to do. There is an at home test kit for about $60 that tests for pollens, dust mites, and wheat, milk, and egg allergies. I think that kit uses IgE antibodies. Does anyone think that test would be beneficial or not? The IgG antibody test costs $379 which is a lot of money for me, but it does test for nearly 100 foods (delayed allergies). Then of course, there are specific tests for celiac disease. Anyone have any advice about any of these kinds of tests?

 
Old 05-02-2006, 12:46 PM   #13
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Re: Celiac disease question

Meridian Valley Labs has a combined IgG/IgE blood test over 96 foods for around $100. They are an FDA & CLIA certified lab. The blood test is very good value, however, you must still find a physician to order a blood draw (about $25 extra for the draw done elsewhere) if you don't live near the lab in WA state.

If you have healthcare insurance, you should be able to get regular allergist-office scratch testing done for stuff like dust, mold, & pollen.

If you have a personal or family history of food allergies or allergies of any type, getting allergy testing done is reasonable if you are suffering from unexplained symptoms.

If there is a family history of celiac disease, or of gut distress combined w/anemia and/or thyroid disease, celiac disease testing is reasonable. However, it is expensive & as previously mentioned, not necessarily conclusive.

IME you can get a lot of info from Enterolab stool and/or Meridian Valley Labs tests.

HTH. Best wishes.

 
Old 05-02-2006, 12:48 PM   #14
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Re: Celiac disease question

i'd agree with elmhar.

i had the ELISA food allergy test done at Meridian Labs and they were great. the report is very easily understandable and of great value.

scott

 
Old 05-03-2006, 08:45 AM   #15
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Re: Celiac disease question

Can you order the test at Meridian Valley Labs yourself? I don't see any pricing information listed. I am worried that my doctor will not want to set up an account there for just one patient.

 
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