Suspected Celiac

[driekus]

I need some advice.

I have had GI problems for quite a while and they have been getting worse.

I have played around with my diet quite a bit and found that when I remove gluten from my diet (very strictly) the cramps and other less pleasant affects go away.

I had the blood test done and this was inconclusive and awaiting results for Barium test.

I went gluten free for a week and then today had some glutenous cereal and within four hours I was quite sick.

I feel like the doctors are treating me as if it is psychological and not physical.

I am highly educated and know my medicine well. To have a doctor tell me the celiac blood test is conclusive and that is unlikely that you are allergic to this 'sugar' (at this point I was pretty skeptical that she had a medical degree)

Any advice? Is a diagnosis that important? I see people in some celiac forums putting themselves through hell just to get a piece of paper with a diagnosis on it.

[kareng]

Get a copy of the blood tests and look for yourself. Gluten is a protein not a sugar. The doc may not even have ordered the correct tests.

[driekus]

Get a copy of the blood tests and look for yourself. Gluten is a protein not a sugar. The doc may not even have ordered the correct tests.

Yup my reason for wondering how the doctor made it through med school.

I am going to talk with the doctor on Monday, so will ask to look at the test results.

[kareng]

Yup my reason for wondering how the doctor made it through med school.

I am going to talk with the doctor on Monday, so will ask to look at the test results.

Don't just look, get copies. You might have a question later. You might want someone else to look at them.

[AVR1962]

You asked how important the diagnosis is.....with your own medical knowledge, you probably all ready know that tests are not real reliable. Many of us here that had more neuro issues than digestive did not get the diagnosis the traditional way, myself included. I knew gluten was my issues and I wasn't needing a doc to tell me what I was or was not feeling. I too felt like they thought this was in my head and was told many times it was just stress and encouraged me to seek counseling. I was sick, sick, sick. Good thing is I did not stop making visits to the doc and in the process of them trying to eliminate thru blood tests for just about everything under the sun, some amazing things came out of it.....I had bone loss, I was vit & mineral deficient but all my neuro symptoms had no link.

I actually went off gluten at the request of another family member who knew how sick I was and I figured I had nothing to lose. BINGO, I knew it was my issue in 3 weeks of being off gluten. I did finally get a diagnosis after docs saw my continual improvement off gluten.....high blood pressure went down, high calcium went into normal range, heart palipitations stopped. With all my other tests they put the pieces together like a puzzle.

You have to do what is best for you, and not wait for a doc to decide that for you.

[driekus]

You asked how important the diagnosis is.....with your own medical knowledge, you probably all ready know that tests are not real reliable. Many of us here that had more neuro issues than digestive did not get the diagnosis the traditional way, myself included. I knew gluten was my issues and I wasn't needing a doc to tell me what I was or was not feeling. I too felt like they thought this was in my head and was told many times it was just stress and encouraged me to seek counseling. I was sick, sick, sick. Good thing is I did not stop making visits to the doc and in the process of them trying to eliminate thru blood tests for just about everything under the sun, some amazing things came out of it.....I had bone loss, I was vit & mineral deficient but all my neuro symptoms had no link.

I actually went off gluten at the request of another family member who knew how sick I was and I figured I had nothing to lose. BINGO, I knew it was my issue in 3 weeks of being off gluten. I did finally get a diagnosis after docs saw my continual improvement off gluten.....high blood pressure went down, high calcium went into normal range, heart palipitations stopped. With all my other tests they put the pieces together like a puzzle.

You have to do what is best for you, and not wait for a doc to decide that for you.

Thank you for the support.

Despite having an abundance of medical knowledge and faith in the medical community. This seems to be an issue that they perform very weakly. Given that 1 out of 100 (depending on source) of people are celiac and the up to 15% of people are gluten intolerant (depending on source) this completely stuns me.

I think there is definitely a need for a better test, one that could potentially replace the highly invasive tests that are conducted here. In Alberta we have a major problem getting colonoscopy with long wait periods, therefore many doctors are opting for barium tests. In my opinion multiple barium tests are probably not healthy in the long term due to radiation risks.

It would be really cool to have a point of care test for celiacs, much like a home pregnancy test. This is technically feasible in my opinion and it would enable people with suspected celiacs to run multiple tests to help with diagnosis.

A better test for gluten intolerance would also be an asset.

I am sure that if I was referred to a GI specialist that he or she would be better informed. But getting to a specialist in Canada is restricted by the GP which acts as a gatekeeper.

I hope that with time GP's will be better trained on GI tract issues. I also hope that society starts to pay more attention to what is put in food products. This is not restricted to gluten, but the large quantity of potential allergens in our food is significant. Most of these appear to be designed to improve shelf life and minimize costs.

*end rant*

I will be seeing doctor tomorrow and get a copy of the results. But if I find gluten is the problem I will just cut it out and if I feel better will stick with it.

Thank you again for all the support here, this community is incredibly helpful.

[kareng]

Colonoscopies don't diagnose Celiac. Not sure how a barium test would either. sounds like they are looking for something besides Celiac.

[Roda]

Colonoscopies don't diagnose Celiac. Not sure how a barium test would either. sounds like they are looking for something besides Celiac.

That was my thought too.

[driekus]

That was my thought too.

So they are trying to rule out or confirm other potential causes?

[kareng]

So they are trying to rule out or confirm other potential causes?

That's what you should be asking! Barium tests are like a fancy xray. You don't diagnose Celiac with that

Write down your questions for the doc so you don't forget anything.

[driekus]

So the

AT IgA <1.0

and the IgA was 1.7

Im guessing it probably is not celiacs based on these results.

The barium test was run to detect diverticulitus, which also came back negative.

Very hard to pin down what the problem is.

Im going to start to experiment with my diet.

I will get my wife to add wheat gluten every now and again (without me knowing). If I get sick then I know it is something that gluten is the problem. I may also try glutenzyme and see if that helps. This will tell me if it is potentially intolerance which she said that she could not test for.

She also suggested to look at carbohydrates and whether carbohydrate breakdown could be the problem. If I don't get anything definitive from the gluten then I will start looking at that.