Biopsy Negative

[Aquina1300]

Hello Everyone!

I got my biopsy results today and they are negative. Four biopsies were taken. I didn't get a copy of the results yet but I am going to request a copy. I did have elevated IgG on the celiac blood panel tests. I do have anemia and hypothyroidism.

I have been gluten free since April 25.

My Doctor agreed to diagnose me with a gluten challenge. The dietician is going to call me for an appointment.

Here's what I have noticed since being gluten free:

masscara used to bother my eyes. gluten free masscara does not.

gluten free cereal does not make my mouth sore the way most cereal does.

still have D but not as much.

I am sleeping better at night.

I had cramps this month but not as painful.

Do you think I should continue with my present doctor or do you think I should find a different doctor and redo the biopsy? (I do realize I would have to eat gluten again to redo the biopsy but I will have to for the gluten challenge anyway)

What do you all think?

[Guest nini]

I think you already have your answer with elevated antibodies and positive dietary response. The Dr. did not take enough samples for your biopsy, and if you were already gluten-free then that would affect the results. My opinion would be to accept the elevated antibodies and positive dietary response as proof positive, and don't worry about a gluten challenge. Eventually you will accidentally gluten yourself and you will see oh so clearly just how it affects you.

I never had the biopsy at all. Dx on elevated antibodies and positive dietary response alone. Why do you want this dx on your permanent record anyway? Just stay gluten-free and don't worry about it. You don't need a Dr.s permission to stay gluten-free.

[CarlaB]

Mine came out negative, too, after a six week gluten challenge that wasn't worth it even if the test came out positive. I do not know how many biopsies they took because I didn't know enough to ask. Anytime I accidentally get gluten, or think back at my gluten challenge, I'm sure without the official diagnosis! I did get tested by Enterolab because my bloodwork had also been negative and was taken before the gluten challenge and I wanted to know for sure whether I had the antibodies. The GI doc had done the biopsy without positive bloodwork and didn't redo it after the gluten challenge because he was quite sure he would find damage. He didn't consider that it could be anything else given my symptoms. It was amazing how after the biopsy came back negative he was totally closed to the idea it still might be a gluten intolerance issue. I know I feel better, and that's good enough for me. If I have any doubts, which I still do sometimes, my family straightens me out on that really quickly (Do you really forget how bad you felt, accompanied by a look like I'm acting like an idiot!) Also, Nini makes a good point, without an official diagnosis, I won't have to claim this as a pre-existing condition.

[nettiebeads]

I think listen to your body!! It's telling you it doesn't like gluten- whether it's intolerence or celiac, the results are the same - the gluten-free diet. I was dx'd by diet alone, before all this testing became the norm, and believe it or not, some in the medical field are deciding that the tests are not reliable enough but the diet challenge is!!

When I get enough money, I'm going to do Enterolab, but only for the gene thingy so I know what I may have passed on to my dd. If you feel better being gluten-free, stick with it. Gluten is poison to your system, so to redo any testing, you would have to poison your body for a long time to MAYBE get the results you are looking for.

Annette