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Should I Find A Doctor Specializing In Celiac?

NYCCeliacMom

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NYCCeliacMom Apprentice
NYCCeliacMom
Posted

I am 52. My 16 year old daughter was recently diagnosed via blood test and biopsy. My blood test was high postitive. My endoscopy is scheduled for the end of the week. My issue is my doctor. I saw him 3 years ago for colonoscopy and endoscopy because I was anemic and and gastro symptoms, including reflux. I should add that I am about 30 pounds overweight which apparently makes me atypical for a celiac. The dr. did not do any blood work for celiac and says now that the biopsy of my small intestine was "non specific". He also dismissed the possibility of my having celiac with "celiacs are pale and underweight". I actually feel my weight issues may relate to the celiac, because I overeat to feel more energetic (I see now it doesn't work!). I am going ahead with the procedure because I don't want to wait for another appt with a new doctor. I feel though I might be better off with a GI with more of a specialty in celiac. Plus feeling upset that my daughter's issues could have been caught so much earlier!

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leadmeastray88 Contributor
leadmeastray88
Posted

Hi there! Welcome to the board!

It's hard to find a GI who is even familiar with Celiac to begin with, nevermind one who specializes in Celiac. That may be hard to find, but of course it wouldn't hurt to do some research. If you can, go for it!

As for you being overweight, I know there are people here who experienced this as well instead of being underweight as is the "norm". You'll find that there is not two people here who have exactly the same symptoms and it's amazing to see how symptoms can be contradictory. For example some have diarrhea, some are constpated, etc. So no you are not alone with the overweight part and it's too bad your GI is using that as a reason you couldn't be Celiac. He's wrong. Since your daughter is Celiac there's a very high chance you could be too. Don't let him sway your decisions. Go through with the endoscopy but make sure he knows what he's doing. He needs to take at least 5 samples from your intestine and from different areas.

In any case, I hope you find all the answers here that you are looking for. Ask away! And again, welcome! :)

ang1e0251 Contributor
ang1e0251
Posted

I'm a self-diagnosed overweight celiac!! There are many of us out there. My dr is scepticle about my dx too. He thinks I attribute too many symptoms to celiac. He doesn't really know much about it and I think that is typical of most gp's. I forgive him as I am not relying on him for either a diagnosis or treatment of this condition. I'm conducting my own research and going from there. All he needs to know are the improvements in my health from going gluten-free. Now if I could just get the BP down...

That's probably tied into my weight so that's another problem I need to address after the holidays. We can work on it together! I hope your testing turns out the way you wish.

cyberprof Enthusiast
cyberprof
Posted

Welcome!

I am diagnosed and I was 30-35 overweight at diagnosis. I was always hungry and ate to fill my stomach to make it feel better. Your doctor is wrong about a lot...I think there is a study posted that about 30% of those diagnosed w/celiac are overweight at the time of diagnosis.

My dietician explained that my body thought it was starving, not getting enough nutrients and therefore lowered my metabolism and held on to all the food that it could! So when they say that most people who are overweight don't have metabolism problems to blame, that is not the case for me. Though I should do something about it now that I'm used to celiac.

Since you're in NYC, read Dr. Peter Green's book on celiac "Celiac- the Hidden Epidemic" I think that's the title and I believe that he's at Columbia at a dedicated celiac clinic. Try to get in to see him or another doc there.

Good luck!

ptkds Community Regular
ptkds
Posted

I am much more than 30 lbs overweight, and I was diagnosed with Celiac. It definetly happens, and it may be more common than anyone thinks.

Now if only I could actually get the weight off, I would be happy!

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