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Had Negative Biopsy Yesterday And

hungryforlife

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hungryforlife Apprentice
hungryforlife
Posted

I had my biopsy and a colonoscopy yesterday. When I had originally went to the gastro, I met with his PA, I met the doctor only two minutes before the procedure. As we were talking he was confirming my symptoms, and I told him about eating oatmeal and changing my diet to whole grains and getting progressively worse over the past three years. He just said hummmm. Then I said I had found out that my bother had celiac and felt that I should be tested since I had been having the same symptoms; and that after I took oats out of my diet alot of the symptoms lessened or disappeared.

He stated: "Well, I've only had one case where siblings have both had celiacs." Then standing over me he said, "The blood panel that your doctor took is usually pretty accurate."??? I felt dread at that point! My PCP only did the Aga IgA/IgG tests, not the whole panel. I knew I was not going to be getting any gluten (anything) diagnosis from him!!!! I told him that my brother tested negative and that his body didn't even produce IgG antibodies. He said, "Hummm...."

My test all came back normal. He only did two biopsies. Said my small intestines were normal.

I have just been stunned silent ... I still plan on going gluten free - but I sure was hoping for some concrete news. (I am assuming they can tell if the villi are flattened by looking?)

Thanks guys!

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Guest nini
Guest nini
Posted

he didn't take enough samples for an accurate biopsy... even still if the is any damage, it can be sporadic and easily missed especially if they are only doing BLIND samples, by not using a scope to see what they are doing and looking carefully at the areas they are sampling... most GI's are still just looking in until they get right into the upper part of the intestines and just taking one or two samples and not looking around or probing further to look for any inflammation or scalloping or anything.

I think even though you wanted some kind of concrete proof, you may have to self diagnose. Do the gluten-free diet, keep a food journal, after at least 3-6 months, then if you want to test it by trying to reintroduce gluten you can, but keep in mind, not everyone gets symptoms all the time. So, you may want to just see how you feel gluten-free. And go from there. Good luck.

hungryforlife Apprentice
hungryforlife
Posted
  • Author

Yes, I know he looked around, Ive got the pictures :)...lol I just think he doesn't think I have celiac and did the obligitory two biopsies and called it a day.

I know for myself, just by giving up OATS, I already feel better and have only had "D" one time and that was the day I ate oats after going to the gastro. ALso the pressure in my head and the "drugged feeling" went away as well. So, maybe I do not have celiac, but I know that I do have a strong reaction to oats.

I still plan on going gluten free, just because I know the seven days I spent gluten free I felt fabulous! Now, my problem is - is when I give up wheat products my blood sugar drops quickly. This morning I felt the dizziness and lightheadedness so I had an egg and cheese on corn tortilla and an orange. I still go dizzy and lightheaded about twenty minutes later. A glucose tablet stablized it??

Anyway, as you say, It is not a crime to give up gluten and if you feel better giving it up then you have your diagnosis! No Gluten!

Carriefaith Enthusiast
Carriefaith
Posted

Maybe you could get a celiac gene test. If your doctor won't order one, you could order one from enterolab.

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num1habsfan Rising Star
num1habsfan
Posted

any biopsies I had from an endoscopy and colonoscopy were negative. a lot of GIs seem to believe that it dont matter how long you are gluten-free before getting the biopsies, the tests should still be positive and he should still be able to see damage. So according to them if the test is negative, you dont have it.

Thats what happened with me. But I just say I am gluten-free because I know myself it's Celiac.

I guess this is just so you know you're not alone

~lisa~

moonunit Apprentice
moonunit
Posted

Hi there! Your story is very similar to mine -- I'm on day 3 of a gluten-free diet after positive bloodwork but a negative diagnosis. My doc also only took two samples to biopsy, though the recommended from Columbia University is 4 to 6. The UCSD medical research center suggests at least 6.

Here are a couple links telling us without a doubt that the partial blood panel we both got is outdated and no longer recommended as a diagnostic tool:

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I'd think NIH would be a pretty reliable source... :) I may give these links to my doctor when I explain why I'm firing her and going somewhere else for my medical treatment -- I tried to tell her this during my visit with her and she blew me off like I was a gnat.

We may never know "officially" whether we have celiac disease, but what happens on the diet is the important thing. As my husband pointed out, at least we don't need to rely on these doctors for medicine or operations or anything! The power is with us! (Or with you, anyway -- until I've been on the diet for a while, I won't know for sure that this is what I actually have!)

Good luck to you!

SeaTwo Newbie
SeaTwo
Posted

I can top all that:

My GI orders the Celiac Sprue Panel and then schedules me for a colonoscopy (only). How is that for a good testing combination!?

At my follow up visit he told me that it's way too extensive to test for celiac, but, if I feel better from being gluten-free for 12 days now, then it's pretty sure that I have it.

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