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Talking To New Gp About My Gluten-intolerance/celiac

lintenn

By lintenn
in Doctors

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lintenn Newbie
lintenn
Posted

Hi. I'm totally new here so hope I'm doing this posting thing right. I am feeling very confused about what kind of doctor to see, who to trust, etc. New enough to this that I feel nervous about how to talk to doctors about my celiac disease (that I'm pretty sure about but they might doubt).

I have been gluten-free for about seven months. Have not had a blood test or biopsy, but had the Enterolab test about 4 months into the gluten-free diet, and even then the results were pretty dramatic, and I have two sets of the genes. It appears that I probably have celiac disease. Most of my symptoms have subsided except for bloating and still have the loose stool. I am convinced and don't feel a need to have the biopsy to convince me, but it's time for my annual checkup with an MD and my old family doc has left the practice and i have to see a new doc. Since my last MD was clueless about celiac I am afraid I'm expecting the same from the new one. I will of course report what's been going on and I'm expecting that he will want to refer me to a GI doc.

The naturopath has helped me tremendously, but I wonder if it's safe to just assume it's celiac and continue my gluten-free diet and do the naturopath-supplements route and assume it'll heal, or if there's a good reason to get checked out by a GI doc. i am not going to be willing to reintroduce gluten and make myself sick to get a biopsy at this point...I don't think....but could they still do a blood test and have the results be meaningful, after 7 months gluten-free?

I know there's a lot of knowledge here and experience with various kinds of medical pros, so I'd appreciate any thoughts...

thanks.

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mushroom Proficient
mushroom
Posted

Hi Lintenn, and welcome to the forum.

It sounds like you are pretty clued in about celiac, and pretty much know the answers to whatever lingering questions you may have. You are correct that blood testing and biopsy would be pretty useless at this stage unless you were tp resume eating gluten for 2-3 months, which I can understand you could not tolerate even the thought of. If you have the symptoms, you have the genes, you have the positive results from Enterolab, and improvement on the diet, there are really not many more questions that need answering. If I were you I would go to your new doc, tell him your history, show him your results, and then if necessary. do a gluten challenge (you will know in 2-3 days) if you or s/he still have any lingering doubts. If you have dramatic symptoms from resumption of gluten, that in itself will be pretty diagnostic. Most doctors would diagnose you under those circumstances without putting you through the pain of the 2-3 month agony of eating gluten. I don't think you need a GI referral; you just need to show your new doc what gluten does to you. If he has any clues at all (and granted a lot don't), I don't think there should be a problem. Stick with the naturopath since he seems to have helped you over the hump, and follow his recommendations; a lot of us have found them tp be very helpful. One thing you might have your new doc do for you is check your blood nutrient levels for Vit. D. B12, A, K, folate, zinc, magnesium, calcium, ferritin. These levels should all be mid-range for optimum health. Borderline low levels will probably require supplementation. You are at risk for osteoporosis and anemia amongst other things, and you won't start absorbing nutrients properly until you are completely healed.

Do not be alarmed about some bloating after seven months; occasional bloating is perfectly normal and I still get it after two years. It will continue until you are healed, and even then some foods like legumes may make you bloat. Sometimes you have to watch out for other foods that you might be intolerant of if the symptoms are persistent. but with luck you will heal totally within a couple of years. Healing times are individual to each person and often depend how long your have been experiencing symptoms.

I hope this has been helpful to you. Come back with further questions and let us know how you get on with your new doc.

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