As much as I (we) hate having celiac disease, I’m happy to at least have some diagnosis that explains my issues.
Well…most of my issues anyway :-)
But there are tons of people out there who do not have the benefit of a celiac diagnosis.
Perhaps they went gluten-free before getting a diagnosis, feel great and refuse to go back on gluten to get an official diagnosis.
Or they don’t have the money to get the blood test and biopsy.
Or their blood test came back negative but they just “know” that gluten is wrecking havoc with their body.
If you can relate, then the following “Dear Gluten Dude” is for you.
What do you call yourselves? What do you tell your doctors? Does it affect your health insurance?
And if you say you’re gluten intolerant, do you get taken less seriously?
Please offer up your sound advice.
Dear Gluten Dude,
First off, I just want to say how much I love reading your blog.
I’ve been struggling with this issue for a while now and don’t quite know who to contact, so I’m hoping you can offer me some advice.
I am a college student and was “diagnosed” (I use that term loosely) with some sort of gluten intolerance about a year and a half ago. The problem is, I’m not exactly sure what it is that I’m dealing with. My doctor initially dismissed my symptoms after doing maybe two blood tests (apparently the test for Celiac Disease came back negative) and after putting me through therapy for half a year (because I was clearly making everything up) with no real results it was decided that I should have a colonoscopy and an endoscopy.
(Side note – this is a really fun way to spend spring break during your senior year of high school!)
Anyway, my results from the biopsy apparently indicated signs of celiac disease but it was not 100% certain. I was told to try going gluten free and if I felt better, that was that.
I did this and after some time I felt a lot better. I told my doctor and they said that was good and then I never heard from them again.
(Another side note – this was at one of the top pediatric gastroenterology clinics in the nation.)
Here is my dilemma. I was never formally diagnosed with anything. I don’t know the results of my blood tests or biopsies because the hospital is charging something like $120 to view my medical records and that’s not really something I can manage right now.
I know I can’t eat anything with gluten and if I do, I feel absolutely awful and it takes a good while for things to get back to “normal.”
Now…I know the point is that I have an answer as to why I have been sick all these years, but it is still bothering me that I don’t exactly know what I have. I don’t know what to put on forms when I go to the doctor and I feel like if I just put “gluten intolerance,” I won’t really be taken seriously
I know it’s not worth it to go through all the tests again, but it’s just bugging me that I don’t have a definite answer.
I was just wondering if you could offer me some advice about this issue. I know to avoid gluten, but that’s about it. If I say I have a gluten intolerance, I’m not sure if that is accurate but if I say I have Celiac Disease, I’m not sure if that is true either.
Thanks in advance!