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Biopsy Showed "very Mild" Cd Poss. Blood Neg

phoebebennet

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phoebebennet Newbie
phoebebennet
Posted

Hi,

I was on some meds that were causing me gi distress, and I ended up having an endoscopy. the result was something they called "very mild" possible celiac disease--they did not seem sure. So they gave me the blood test, and it was negative. Also, Ihave not had the gi symtoms since I went off the meds. Anyway, my doctor says I "might or might not" have celiac disease-- and to see if I felt better on the gluten-free diet. They did not even think it was necessary for me to see their nutritionist--I got the feeling that they were not convinced...

My questions are these: If the symptoms were not present for 6 weeks, how do I know if I feel better? Which is more rel. they blood or the "questionable" biopsy? If I try gluten-free just to be on the safe side, does it have to be whole hog? Is it the same thing to have a little soy sauce on my rice as it is to eat 6 slices of whole grain bread?

Has anyone else had this type of confusion?

I appreciate any help and guidance I can get.

Thanks so much

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tarnalberry Community Regular
tarnalberry
Posted

there's no such thing as "mild" celiac. much like there's no such thing as being mildly pregnant. you are or you aren't. a biospy that shows only slight damage so far means not that you've got mild celiac, but that the damage hasn't progressed very far - yet. it may progress in you slowly, or it may only have been triggered fairly recently. but it's still happening. the blood tests being negative may be because there hasn't been enough damage for enough of the antibodies to make their way from the intestines where they are generated into your blood stream. if you are still very uncertain, you might consider locating a specialist who treats celiac disease regularly and get a second opinion (he/she'll probably want to see the biopsy slides as well).

unfortunately, you would have to go completely gluten-free. yes, a little soy sauce (well, the kind made with wheat, there's a tamari out there that's not made with wheat) would be just as bad as eating lots of bread. the reason is because it's a basic chemical reaction in your gut. your immune system will see the gluten molecule and react - by attacking your intestines. I recently read that it essentially starts off a chain of chemical reactions that takes a number of days to go through that entire set of reactions. in any case, your immune system will react to each molecule it comes across - and the intestines are designed to come across every molecule you eat. so any gluten you ingest (even small amounts) will cause damage and raise the risk of the medical complications that go along with untreated celiac disease (including osteoporosis, nutritional deficiencies, and intestinal cancers).

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phoebebennet Newbie
phoebebennet
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Posted

thanks for the information.. I appreciate your reply! :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

I totally agree with tarnalberry. Alot of celiacs don't even have symptoms and celiac is very underdiagnosed. It is damaging your intestine the way to avoid that damage and restore it is through a gluten-free diet.

ANY gluten will damage you. I had no symptoms growing up and could eat anything with no problem until I had mono one year. When I finally was diagnosed a few months later with Celiac I had to go on a gluten-free diet. I thought it was so crazy until I realized once it all was out how much better I felt. Now, the more I have been off gluten the more sensitive I am to it. I can feel a reaction to just a little bit if something accidentally slips in. There is alot of stuff you can have with celiac. Just the worst thing to do is let your intestine get damaged. Being a celiac and not following the diet is like killing yourself slowly. There are increased chances of lymphoma, lupus, etc. with people that don't follow the diet. so whether its a whole pizza or a little pretzel it will still hurt you.

Hope this sheds a little bit of light:) Have a great day

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Tarnalberry is very right.

Just try the diet 100% and you may feel great. It's not that hard to follow and there are some yummie things!

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jknnej Collaborator
jknnej
Posted

These guys are right. It might be frustrating at first but believe me, there are TONS of things you can eat that are delicious. After awhile, you will think normal food is gross!

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