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Laurelf

Finally Saw Celiac Dr And He Wants Another Blood Test

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So, I have been pretty much diagnosed with celiac although the biopsy said "could be early sprue" and the blood came back negative but I have all the symptoms, DH, positive gene test, fecal fat, etc. I had not seen the "official" celiac dr though until yesterday as he cancelled a couple of appointments. So he says to me, "You could have early stage celiac, or a gluten intolerance, or just an inflamed gut - the only way to know is to go back on gluten for ONE MONTH and re-do the blood, and oh yeah, 5 % of celiacs will have a negative blood test anyway. When I went through all my symptoms, he kept saying it could be celiac but might not be. As for my DH, all that's left are scars. He suggested that if it flares during the month of re-glutenizing, to get it biopsied right away before I scratch it (yeah, like I can get an appointment with a dermatologist right away).

So, since I've been dying for Chinese food, I had my husband bring in the food last night. Well, during the night, my behind itched real bad and now today I have really bad gas, bloating and pains. I don't think I can take a month of gluten. Off gluten, I'd been feeling so good - my skin looks wonderful for the first time, no problems with digestion except for occasional cross-contamination problems. The dr said he won't put the "celac diagnosis" on my record until it's "official" because of the health insurance implications ??!!

I asked if my son should be tested and he said if it's "just a gluten intolerance" than no but if it's celiac, then yes.

How important is the official diagnosis? Is it worth a month of pain?

Thanks,

Laurel

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Quite frankly, I would tell your doctor to go pound sand :angry: Either way, whichever it is, the fix is still a gluten free diet, so what would be the point?

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You have already had a postive biopsy, the gold standard. You become sick when eating gluten, you become well without. What more proof is really needed? A month may not even be enough for a postive blood test and then where will you be and what will you do? If I had to wait for a postive blood for diagnosis I would be dead by now. LOL The choice to follow the doctors directions to gluten yourself to prove to him that you really have an issue with gluten is totally up to you.

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Laurel, All I can tell you is if it were me I would continue to be strictly gluten-free and never look back. Your biopsy was positive--that should have been enough.

Knowing what I know now from going back on gluten once after going gluten-free for a short while (before I was diagnosed, I went to a Kinesiologist who put me on a cleansing diet that included no gluten--I seriously doubt I was strictly gluten-free since at the time I didn't know what all was involved), you may very well experience symptoms even worse than before as well as find that you are sensitive to other foods in addition to gluten.

I think it's barbaric for a doctor, in light of your biopsy, positive response to the gluten-free diet, and your DH symptoms to "require" you to poison yourself for a month--which, incidentally, is really not enough time to produce a valid result--just to make himself feel better. It's absurd.

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The only benefits I can think of for an official diagnosis are these:

1. Some people might think they can cheat on the diet if they don't have the official diagnosis. You don't sound to be one of them.

2. You can get a tax break on your gluten-free food expenditures (I looked into it -- it didn't look like a big enough break to go through the trouble, but that kind of depends on how you eat).

3. You can say with confidence, "I have Celiac Disease."

Honestly, I never heard of the blood test ever being the deciding factor. With the exception of my sister, everyone in my family who has it has been diagnosed despite negative blood tests. With the biopsy, the DH, the positive gene test, and the symptoms, there's really no question what you have. I'd say, tell the doctor what you went through after your first glutening, tell him you're not going through it, and if he won't write it in your chart you can go to a new doctor or just skip the official diagnosis entirely and keep eating gluten-free.

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Here in europe in some coutries one would need an official diagnosis for health insurance, because then they subsidise your gluten-free food.

DH means celiac, do you know that?

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