To Tell My Doctor, Or Not Tell My Doctor

[Greeneyes4950]

Hi, to make a long story incredibly short, i have had a range of health problem develop in the last few years. I'm 20 yrs old, and in college, one of the worsening problems in my life was stomach problems which lead my doctor to diagnosis "IBS" -- her advice, "Stay away from trigger foods", without giving me any guidence as to what these food may be, and to increase my fiber, even though my very healthy diet contained lot of fruits, vegetables, 100% whole grains, and easy to digest beans like lentils. I brought up how i discovered months before i was lactose intolerant, and she just recommended i take lactate. During that appointment she said to me "maybe it's celiac", but decided not to test me for it, because i had a BMI in the normal range.

Well my stomach problems continued despite the individual foods i eliminated or reduced. This summer i decided to do whatever i had to do to feel better, read up on food intolerances and celiac disease and embarked on a restrictive gluten/casien/soy/egg/yeast - and corn light diet. -- and my stomach problems practically went away.

But i wondered if it was really the diet or something else. Maybe i was crazy? lol

So i decided to get myself tested through enterolab, and purchased the Gluten Sensitivity Stool and Gene Panel.

Well my results should be back in 1-2 more weeks.

My main thought though is whether to tell my doctor if the tests come back positive. My main concern is that she will think that the tests weren't accurate since it's through a mail to lab.

"Yeah hi, i decided to just get myself tested though an indepenent lab..and the results are positive"

-- i expect she will just say "well stay away from gluten".

Plus i've been basically gluten free since August, (though i had some slip ups) and if she wants to do testing such to confirm it, it will probably be messed up from being gluten free.

So would it even be worth it to tell my doctor when i get the results and they are positive? Should i call her up and tell her, or just wait until my next check-up?

[Matilda]

...

[tarnalberry]

well, it sounds like you don't particularly trust your doctor... maybe I'm projecting, because I wouldn't from what you describe. I would note that you decided to go gluten free if you do it, for the sake of full disclosure, but feel no obligation to discuss it.

[gfmolly]

Your road to discovery sounds just like mine. I was actually a grad student when I started the lactose free diet and then went gluten free when that didn't seem to be the only problem. I was eating just a pbj on whole grain bread before class to help me get through a 3-hour class, and would be in horrible pain and my stomach would make horrible and loud noises! Once I went Gluten-free Casein-free, the pain, D, and noises cleared up. Now when I get glutened, or cc'd, my symptoms flare up instantly. The diet can be a good indication of whether you are gluten intolerant or not. From what I have read, Enterolab does not diagnosis celiac, only intolerance. This should at least confirm your thoughts and own testing by diet.

My first doctor had diagnosed IBS and suggested lactaid after a colonoscopy didn't show anything. After I did my own research and tried the diet I switched doctors and am so glad that I did! My current doctor isn't concerned with whether or not I have celiac-she just believes that gluten is a poison in my body so I should stay away from it! She has done all of the other testing necessary to check my health such as bone density, bloodwork to check for iron and other levels, etc. My own feeling about my previous doc was that if she wasn't interested in exploring the problem deeper, than I wanted a doctor that was willing to go the extra mile to help to find out what was wrong with me.

Anyway, my two cents! Best wishes.

[Zook]

I agree that finding a new doctor may be in order. If you are questioning things you want to discuss with her, then that's a pretty good indication. I no longer expect doctors to have all the answers, but I do expect them to listen and to take me seriously.

[hathor]

During that appointment she said to me "maybe it's celiac", but decided not to test me for it, because i had a BMI in the normal range.

Well, that is silly. Celiacs have BMIs all over. The idea that all are super underweight is not true. I would question going to a doctor that doesn't test for something like celiac that a patient "maybe" has because of an assumption that isn't true. She could have done some research.

She also should have given you some guidance as to common trigger foods instead of leaving it up to you to figure it out from doing your own research.

Frankly, if it were me I would find another doctor. Short of that, I would mention my change of diet, the effect on my symptoms, and the results of the Enterolab testing at my next regular visit. I wouldn't care whether my doctor thought much of the testing at all, since she obviously isn't an expert on celiac or gluten intolerance. You have found your trigger foods, no help to her, and are feeling better.

If she wants followup testing, just say no. You don't want to get sick again. She had her chance to do traditional testing and refused to do it.

[hathor]

edit: delete duplicate post

[Ursa Major]

During that appointment she said to me "maybe it's celiac", but decided not to test me for it, because i had a BMI in the normal range.

Lots of people with celiac disease (at least 40%) have unexplained weight GAIN, not loss. Weight gain can be a symptom of malnutrition as well. Her way of looking at it just shows how ignorant she is about celiac disease.

If you think you could educate her, so she won't do the same thing to other patients, go for it. If, on the other hand, she is one of those doctors who think they are God and know everything, find another doctor.

[Greeneyes4950]

Well i got my enterolab results in

Name: Kent, Kimberly

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 57 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 34 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 726 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 20 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

So everything is positive, and i carry one celiac gene, and one celiac sensitive gene.

Despite my reservations..i think i'm going to call the doctor and make an appointment to speak to her.

Thanks for the responces everyone

[wowzer]

Since your doctor mentioned celiac disease, I would let them know about your lab results. After months of itching, and 2 biopsies (one came back eczema and the second spongiotic dermatitis). The natural cure was the gluten free diet. I really think it was DH, but the biopsy the gynecologist took probably didn't even check for that. I brought up my symptoms to my doctor and he did run a blood test, which came back negative. I actually had been gluten light for the last couple of years, just not knowing why. It turned out he had just been to a seminar about celiac disease and copied all of the info he had. I do have a little sister that was diagnosed at a year, so it runs in the family. I can look back at so many itcy rashes, that I'm sure was DH. Wendy

[debmidge]

what is "BMI"?

[mommyagain]

what is "BMI"?

Body Mass Index. It's supposed to be a better way of determining if you're underweight, normal, overweight, or obese than just pure weight. Here's wikipedia's Open Original Shared Link.

Doctors and insurance companies seem to use them religiously. Unfortunately, since it just uses height and weight and spits out a number, someone who is very muscular will have a higher BMI than someone who is fat. There are lots of high-level atheletes with very low body fat who have a BMI in the obese range!