How To Bring gluten-free Diet Up To Md

[haleym]

Hello Guys!

Thanks for reading this. Some short background before I ask your opinion and advice. A year ago I was suspected of having Celiac, and they ran a blood test and said everything looked OK and did not show evidence of celiac. I was still having really bad digestion issues so my ARNP told me to try the diet, which I did very sloppily and reported back to her that it didn't change my sx. Well, a while later I did my research and saw that I was not being careful at all and tried a month long strict gluten free diet, which TOTALLY helped. I never followed up on it and 9 months later I am still gluten free and doing super well, so much better than a year ago.

I'd like to tell my ARNP that the diet worked and that I think she was right about celiac or gluten intolerance, but I am not sure it would be worth getting further evaluated because I think she would make me go on a gluten challenge and then run the tests again. I am curious to hear what you would do.

Also, is it standard to run a total IgA when they run the Celiac panel. I've had some issues with skewed allergy test results (skin prick) and wonder if that could be related to having IgA deficiency. I've heard that IgA deficient people will test negative for Celiac even if they really do have it.

THANKS very much for your advice, it is very appreciated!

Haley

[Korwyn]

Hello Guys!

Thanks for reading this. Some short background before I ask your opinion and advice. A year ago I was suspected of having Celiac, and they ran a blood test and said everything looked OK and did not show evidence of celiac. I was still having really bad digestion issues so my ARNP told me to try the diet, which I did very sloppily and reported back to her that it didn't change my sx. Well, a while later I did my research and saw that I was not being careful at all and tried a month long strict gluten free diet, which TOTALLY helped. I never followed up on it and 9 months later I am still gluten free and doing super well, so much better than a year ago.

I'd like to tell my ARNP that the diet worked and that I think she was right about celiac or gluten intolerance, but I am not sure it would be worth getting further evaluated because I think she would make me go on a gluten challenge and then run the tests again. I am curious to hear what you would do.

Also, is it standard to run a total IgA when they run the Celiac panel. I've had some issues with skewed allergy test results (skin prick) and wonder if that could be related to having IgA deficiency. I've heard that IgA deficient people will test negative for Celiac even if they really do have it.

THANKS very much for your advice, it is very appreciated!

Haley

It might be worth it since one of the benefits of having the diagnosis is...well that you have a diagnosis. It removes the lingering mental question, "well maybe it really wasn't that". Also, in some ways it helps since with a diagnosis, some insurance companies will allow additional testing for things like bone density scans, melanoma exams, etc, since celiac disease carries a significantly increased risk of these, among hundreds of other increased risk factors. And it can help in other situation where you may need to have a diagnosis for ADA/employer reasons. If you have a diagnosis for a chronic condition you would be able to request an employer make reasonable accommodations for your condition in the event you have a relapse or significant exposure to gluten requiring extended time off for medical reasons, etc.

There is (unfortunately) no 'standard' for the panel. Chances are they did not run a total serum IgA.

[Gemini]

It might be worth it since one of the benefits of having the diagnosis is...well that you have a diagnosis. It removes the lingering mental question, "well maybe it really wasn't that". Also, in some ways it helps since with a diagnosis, some insurance companies will allow additional testing for things like bone density scans, melanoma exams, etc, since celiac disease carries a significantly increased risk of these, among hundreds of other increased risk factors. And it can help in other situation where you may need to have a diagnosis for ADA/employer reasons. If you have a diagnosis for a chronic condition you would be able to request an employer make reasonable accommodations for your condition in the event you have a relapse or significant exposure to gluten requiring extended time off for medical reasons, etc.

There is (unfortunately) no 'standard' for the panel. Chances are they did not run a total serum IgA.

That is a misconception that Celiac Disease carries a higher risk factor for hundreds of other conditions/diseases. The latest version of Dr. Peter Green's book goes into all that and he states that the vast majority of malignancies occur prior to a diagnosis of Celiac. For those of us who are lucky to have a diagnosis and follow a strict gluten-free diet, your odds of having anything drastic happen, above and beyond that of the general population, falls to the normal levels for the general population. I think the time line is around 5 years post gluten-free diet.

Also, I am not sure it's wise to make a request to a potential employer to accommodate a chronic disease state. In this economy, that's a good way to not be hired or to lose your job, if there are lay-offs. Celiac is not a disability or a chronic problem that requires much in the way of special needs in the workplace. The only difference for me is I bring my own lunch to work and don't eat the crap they leave out on the break table. I am extremely sensitive to gluten and have never had any problems at work with regards to this disease. Once you become labeled as having a medical issue today, good luck keeping your job long term. I've seen too many people "laid off" after being treated for a medical problem and then returning to work. It is not fair but it's reality in today's world.

[Korwyn]

Actually I don't believe it is a misconception. However what I should have stated is that UNTREATED celiac disease carries increased risk.

Also I wasn't saying to make a request, I was merely stating that it could be one additional consideration (among many) to push one towards trying to get an official diagnosis.

[Skylark]

Thank your ANRP for the help and decline further evaluation. Doctors like to hear that they got a diagnosis right and it will improve your relationship and care. It also might be helpful for her to know what you did that did and didn't work, so she can pass on the information to other patients. I had a doctor ask me a lot of questions about my gluten-free diet once; she was particularly interested in how long it took me to feel better so that she had an idea of what to tell other patients.

There is a lot of emphasis on finding out whether or not one is celiac, but I think it's a little unfounded in adults who are very gluten-intolerant. If you're essentially eating a celiac diet, there is nothing further the diagnosis would do. Doctors like a yes/no answer for celiac in cases where a person is not willing to eat a strict gluten-free diet because it helps assess the risks associated with consuming gluten regularly.

I'm sure there are situations where having the "rubber stamp" of a diagnosis could be helpful, but there are just as many where being formally diagnosed with a chronic disease is detrimental.