No Celiac

[Linda56]

I read this site off and on. I had the testing for celiacs. It was negative. Is there any other disease that can cause the symptoms of celiacs? I really identify with so many. I have diarreah alot. I have thought its lactose intolerance then thought I have irritable bowel. Was told years ago I had spastic bowels. When I have been able to diet I feel like I get much better. The thing is I have an inner ear disease that caused me to loose my balance. Which really can irritate my stomach and make me feel nauseous. I had the stomach thing before the ear problem or I would say the ear thing was causing it. I also have been told I have asthma that seems to come on from allergies. Last time I colored my hair I had an allergic reaction and now they want to put chemical on my back to try and find out what chemicals I am allergic to. I am not to keen on that as it can cause reactions. I have pernious anemia and get B-12 shots. Doctor was telling the pernious anemia and asthama are immune related. Its been suggested the ear thing is from an autoimmune reaction. I feel like my stomach throws me into vertigo sometimes if I eat the wrong thing or to much. Right now I am going through a thing where I can't eat much at one time or I will feel like I am going to faint. And yet if I don't eat feel I am going to faint. Can't seem to get a handle on what I need to feel better. I can't tell what make me feel the worst. I can say right now I only want to eat potatoes boiled or baked. My lower stomach I guess intestinal area feels bloated and like the muscles are week. Feels like I have been exercising my stomach but I haven't. I am not thin or look like I have any eating problem. Does any of these sound familar to anyone. Thanks for letting me post this and any thoughts.

Linda

[Guest schmenge]

Sorry that you or the docs can't identify what is wrong. How do you know you do not have Celiac? Blood tests are NOT conclusive, but a biopsy is. Many Celiacs are misdiagnosed with IBS. Has this been considered? If you have not already done so, you could try going gluten-free anyway. It can't hurt, and if your symptoms begin to abate..........

[Rikki Tikki]

I agree with Mark Linda. The blood test is going to show negative if you have been off gluten for even a short time before the blood work is done. If you feel better going gluten free then that's the way to go.

Many people on the board also talk about a lab they use, I think entrolab or something, you might want to use them. The correct name should be posted here somewhere.

[tarnalberry]

...

I had the testing for celiacs. It was negative. Is there any other disease that can cause the symptoms of celiacs?...

I have diarreah alot. ...

When I have been able to diet I feel like I get much better. ...

I also have been told I have asthma that seems to come on from allergies. ...

I have pernious anemia and get B-12 shots. ...

Its been suggested the ear thing is from an autoimmune reaction.

I feel like my stomach throws me into vertigo sometimes if I eat the wrong thing or to much. Right now I am going through a thing where I can't eat much at one time or I will feel like I am going to faint. And yet if I don't eat feel I am going to faint. ... I can say right now I only want to eat potatoes boiled or baked. ...

I have two thoughts:

First:

Your symptoms do sound similar to celiac. I strongly dislike when people think that any and everything is celiac, because it isn't. But 1 in 100 people in the general population, and something like 1 in 50 people who present symptoms have it. And you present symptoms! Particularly, you present a number of 'common' symptoms, red-flags if you will: diarreah, anemia, an additional autoimmune condition (possibly), and the dizziness that many people get after eating gluten.

So, my question is - what were your tests? Did you have the full panel of Total IgA, Anti-gliandin IgA, Anti-gliandin IgG, tTg and EMA? If you just had the Anti-gliandin IgA and tTg, and those two came back worthless, then your doctor did worthless testing. (Bascially, those two tests coming back negative tell you the equivalent of "you're glass has less than two ounces of water in it" and "your intestines are probably not totally ripped to shreds". The problem is, many people with celiac disease are IgA deficient - in my analogy, it means that their glasses can only hold one ounce anyway, so no test will ever show them holding two ounces of water. And the tTg relies on the intestines being damaged at a level that takes years in some people.)

If you don't know what tests were run, or what the actual results were, please do call your doctor and get those results. The new medical record laws guarantee you access to your records, so they have to give you the results.

Additionally, the fact that you improved on a gluten-free diet is THE MOST IMPORTANT test result you can have. Yes, the dietary challenge is a test, and yes, your response on it is a valid test result. Don't ignore such an important result. Listening to your body is always vital.

Two:

Some of what you describe sounds like a blood sugar problem. It may or may not be such a thing, but it's just one of the possibilities. It could be that the asthma is separate (allergy triggered asthma is very common - I had it for years before I developed celiac disease, which I believe was triggered by a nine month battle with various respiratory infections for me), as could the anemia (particuarly depending on your genetics and diet and so on). I think it's less likely than the first option, of course, but it can cause the dizziness and stomach problems you're describing. Particularly if you're finding that things like potatoes are causing a problem.

[Guest nini]

you may have "non Celiac Gluten intolerance" which doesn't show up in any testing, but if you go on the gluten-free diet and have a positive response to it, then you have your answer. You may have multiple food intolerances as well.

To me it sounds like Celiac, and probably is. Just because the testing was negative, doesn't mean a thing. The testing is all subjective. The most reliable test is quite simply, how does your body respond to the diet. Since you've already done blood testing, I wouldn't reccommend the biopsy, I would reccommend going gluten-free immediately and give your body a chance to heal. It can take 6 months to 2 years (average) for true healing to start, but you might start noticing improvements after a few days or weeks...

good luck and feel free to hang around this board and ask questions

you asked if other diseases can cause the same symptoms and to answer with my opinion, there are some other things that are related but have also shown that they improve on the gluten-free diet as well, so my first choice would be to try dietary changes and see if it works... according to most Dr.s they will dx IBS, Chrons, Colitis, and other things, and just treat the symptoms with drugs... OR you can see if gluten is the underlying CAUSE and treat the cause and not the symptoms. And again, the best way to determine that is the diet.

[Ursa Major]

Hi Linda, and welcome to this board. I agree with the others, you sound like you have celiac disease, despite the negative tests. They certainly can be wrong. I also encourage you to try the gluten-free diet. You may also have other intolerances. Potatoes will cause bloating and diarrhea for me, too. You may try staying away from gluten, dairy and nightshades and see how you feel (give it at least two weeks to see if it works).

After a while (a month maybe) you do a challenge to see what happens. Eat some bread and see if you react. Wait for two weeks to rule out delayed reactions. If you reacted eliminate that food again, and try dairy for instance. Two weeks later try potato.

Many people with celiac disease also react to soy and/or corn. Since your doctor isn't much help, you may have to figure it out yourself. It can take a while, but is possible.

[Linda56]

Gee thanks alot for all the responses. I think I will make an appt to see my records at the clinic I go to. Just to see the exact name of the testing that was done. I did have an IGG, IGA, IGM testing I think the IGG and IGM were negative but the IGA was positive. The doctor said that had to do with mucus membranes. But then he said he was doing another test for celiac he did and it was negative.

Trying gluten free seems like the simplest way to go and see what happens. I eat a lot of rice as it doesn't usually bother me. I haven't connected potatoes with anything so I am not sure. The only bread type thing I feel for sure bothers me is rye or pumpernickel bread. I eat oatmeal but feel like it bothers me. But then oatmeal has so much fiber I thought maybe that is what I feel. I really can't tolerate raw vegetables very well. I don't mean just in a stomach sense but just a strange feeling. Especially cantalope, bananas or anything with the least bit greenness to it. Or if I get any rine like from water melon. I read one time a person can be allergic to vegetables or fruit but not neccessarly that they can't eat them. I can't drink coffee or any kind decaf or regular. Dieting before I mainly ate rice, pinto beans, turkey, oinons and that was about it. I get very ill if I eat at restaurants there is a lot of salt, msg and fat in most food. I am just rattling on I don't expect you all to neccessairily reply to it. Just kind of thinking and putting it down. I will check out the entrolab again. I beleive I looked at it before. I had read a post some people weren't sure it was dependable so I hadn't used it. I was hoping after I got situated with getting the B-12 up I might get back to my doctor. I had mentioned to him a couple times about my stomach and he said he would send me to a gastroenterologist for a colonoscopy. I think I will try and find a book I can read about celiac. I have trouble keeping stuff recorded in my brain. Having a book I can look back to always helps me. Thanks everyone.

Linda

Hi Linda, and welcome to this board. I agree with the others, you sound like you have celiac disease, despite the negative tests. They certainly can be wrong. I also encourage you to try the gluten-free diet. You may also have other intolerances. Potatoes will cause bloating and diarrhea for me, too. You may try staying away from gluten, dairy and nightshades and see how you feel (give it at least two weeks to see if it works).

After a while (a month maybe) you do a challenge to see what happens. Eat some bread and see if you react. Wait for two weeks to rule out delayed reactions. If you reacted eliminate that food again, and try dairy for instance. Two weeks later try potato.

Many people with celiac disease also react to soy and/or corn. Since your doctor isn't much help, you may have to figure it out yourself. It can take a while, but is possible.

[tarnalberry]

You don't have to make an appointment to see your records. Ask them to mail you a copy (or fax you a copy).

[KaitiUSA]

What blood tests did you get done? Some are more accurate. There should be 5 tests done...also a gene test is never a bad idea. Also, as far as a biopsy goes...a biopsy can rule celiac in but not out. You could very well have celiac still even with negative testing.