Not Sure Where To Start?

[KellyN.]

Hi! Recently, after seeing my GP a few times for stomach pain, she casually mentioned that I may want to consider following a gluten free diet. She explained that the symptoms I was explaining to her sounded as if they could be related to a "Gluten intolerance" and then left it at that. Upon going home and reading up on Celiac/Gluten intolerance I would have to agree that my symptoms do sound like some that are listed in relations with this disease. But, I don't know where to go now. She mentioned it so casually and did not offer any further testing and as I read about all of this it seems like a serious condition that needs specific attention and diagnosis.

What type of doctor should I see?

My other confusion is that I do not have all of the symptoms listed in relation the Celiac. What I have been experiencing is:

*Burning in the stomach

*Widespread stomach pain

*Feeling extremely bloated at times

*Feeling extremely gassy

*Feeling constipated (although I'm not)

*Unexplained weight loss (in the last 8 months. Although we did bring our daughter home 8 months ago, so that may explain it!)

*Unexplained Infertility for 5+ years (we adopted our daughter. I've never conceived)

*Fatigue (sometimes extreme)

*Joint pain (this is a toss up. It is not extreme, but its there in my hips especially at times and it seems wrong to have joint pains at 26 years old IMO)

I don't know if those symptoms are specific enough to determine Celiac or not. I just know know where to go next. Any advice would be greatly appreciated!

[Cara in Boston]

I'm pretty new at this and there are many on this list who are far more knowledgable. I'm sure you will get lots of good advice.

Your symptoms sound very much like you could be gluten intolerant and/or have celiac disease. You may find that after going on a strict gluten-free diet you feel much, much better.

But once you go on the diet, most of the tests available for celiac disease will no longer be accurate. You should get tested BEFORE you change your diet. The first step for testing is a panel of blood tests that your primary doctor can request. If any of your results are out of range, you can then go to a Gastroenterologist for additional tests, including an endoscopy.

The confusing part is that you can test negative on everything and STILL have it. The final test is changing your diet and seeing if your symptoms resolve. You can also be gluten sensitive or intolerant and NOT have celiac disease, but there is no test for this other than the diet.

I would recommend you at least give the tests a shot. If your doctor can determine that you indeed have celiac disease, you will be more likely to take the diet seriously. You will know that you have an autoimmune disorder that can be related to other conditions that you should be screened for if symptoms arise. You will need to let your family know so they can get tested (all first degree relatives should be screened.)

Just tell your doctor you want to try the diet but you would like to rule out celiac disease with testing while you are still consuming gluten. Make sure she knows which blood tests to order (my sister's doctor only did one and that was not sufficient).

From my experience so far, the testing process can be long, confusing, and frustrating. If you don't get actual answers, don't give up. You can try the diet and you will be surprised that it is not as difficult as it seems at first.

Welcome and good luck.

Cara

[KellyN.]

I'm pretty new at this and there are many on this list who are far more knowledgable. I'm sure you will get lots of good advice.

Your symptoms sound very much like you could be gluten intolerant and/or have celiac disease. You may find that after going on a strict gluten-free diet you feel much, much better.

But once you go on the diet, most of the tests available for celiac disease will no longer be accurate. You should get tested BEFORE you change your diet. The first step for testing is a panel of blood tests that your primary doctor can request. If any of your results are out of range, you can then go to a Gastroenterologist for additional tests, including an endoscopy.

The confusing part is that you can test negative on everything and STILL have it. The final test is changing your diet and seeing if your symptoms resolve. You can also be gluten sensitive or intolerant and NOT have celiac disease, but there is no test for this other than the diet.

I would recommend you at least give the tests a shot. If your doctor can determine that you indeed have celiac disease, you will be more likely to take the diet seriously. You will know that you have an autoimmune disorder that can be related to other conditions that you should be screened for if symptoms arise. You will need to let your family know so they can get tested (all first degree relatives should be screened.)

Just tell your doctor you want to try the diet but you would like to rule out celiac disease with testing while you are still consuming gluten. Make sure she knows which blood tests to order (my sister's doctor only did one and that was not sufficient).

From my experience so far, the testing process can be long, confusing, and frustrating. If you don't get actual answers, don't give up. You can try the diet and you will be surprised that it is not as difficult as it seems at first.

Welcome and good luck.

Cara

Thanks for your response! I agree that I need to be tested prior to starting the diet. I'm actually a little perturbed that my GP didn't suggest the same, but I called the office today and scheduled the blood work for next week. I am however anxious to start the diet because I'm so sick of feeling this way and I would love some relief!! But, just knowing there may be some relief in sight is relieving... if that makes sense.

I saw someone else asked what tests they needed to have and someone suggested these:

Deamidated Gliadin Abs, IgG

Deamidated Gliadin Abs, IgA

t-Transglutaminase (tTG) IgA

t-Transglutaminase (tTG) IgG

Endomysial Antibody IgA

Immunoglubulin A

Am I missing anything?