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Does The Biopsy Mean I Have Celiac? New To All Of This.

Miller186

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Miller186 Newbie
Miller186
Posted

My GI found evidence of Celiac but seems hesitant to say that I actually have Celiac disease.

My doctor gave my biopsy results as: "Small intestine biopsies: intraepithelial lymphocytosis (inflammation) and focal villous blunting" and said this could be due to Celiac Disease. I'm going for blood work on the 16th. From everything I've searched online it says that the biopsy is the standard for diagnosis as people have been known to get false negatives from their blood work.

I have started a gluten-free diet bc I have been in so much pain. It does seem to be helping.

But if the biopsy shows damaged known to be caused by celiac, why would my GI be hesitant to give me that diagnosis, or are the biopsy results not conclusive enough?

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Other things can cause intestinal villi damage. Look at this link put out by the University of Chicago:

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The blood tests (make sure the entire panel was ordered) will solidify a diagnosis.

squirmingitch Veteran
squirmingitch
Posted

You need to continue eating gluten until AFTER the blood tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Miller186 Newbie
Miller186
Posted
  • Author

Thank you both!

I called and asked my GI doc if I could start the gluten-free diet now due to being in so much pain. He said that I could and that it should not skew the blood test results due to it being such a short amount of time (I just started on Saturday).

I have been worried about this though, I don't want inaccurate results, but I have been feeling much better lately-after an initial rough first day and a half.

Should I go back to eating gluten until my blood work? Ugh the thought of possibly being in pain and discomfort again stinks.

cyclinglady Grand Master
cyclinglady
Posted

Research it yourself. You do have to be eating gluten. I thought the blood test was drawn the day of your biopsy. Sorry!

Good catch Squirmingitch!

squirmingitch Veteran
squirmingitch
Posted

This says a FEW days prior is LIKELY you'll see accurate results. But you stopped on Sat. which will make it 10 days until your blood work. That's TEN days not just a FEW days. You decide.

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Miller186 Newbie
Miller186
Posted
  • Author

OK. Again thank you both so much! I'm glad I came here and asked. I'll definitely stop the gluten-free diet until after my blood work.

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squirmingitch Veteran
squirmingitch
Posted

I'm glad you decided to go back to the gluten. I KNOW it's hard & it will be hard on you especially since you've had a "taste" of gluten free but it's for the best in the long run. Docs are forever telling people it will be okay for them to go ahead & go gluten-free & then the labs come back negative & the doc says well you don't have celiac. :blink: Then the poor soul is left facing doing a gluten challenge which is usually worse than when they were just going along eating gluten. OR going without an official dx. Hang in there. It will all be over soon.

You could just eat the gluten -- a slice or 2 of bread -- at night before bed so it might not screw up your days so badly. Or you can go hog wild & eat all your favorite gluten foods as a goodbye to them. I would ask you to eat something special for me but I speak the truth when I say I don't miss anything now. 

  • 2 weeks later...
Miller186 Newbie
Miller186
Posted
  • Author

So my blood work finally came back and was negative for celiac. However, I went back to the gluten-free diet once the blood work was done and I do feel better.

They said that there were white nodules on my esophagus when they did my scope, so I guess that coupled with the intestinal damage are leading them to think I have some sort of food allergy. I'm waiting for my GI to schedule me for a doc to do allergy testing. The doc who did my scope had told me about the nodules and said it could be due to reflux I was having, or something else (he said what it could be but I can't remember/pronounce it) I'm on Zantac and after being on it for 8 weeks I go back for a repeat scope.

This is all so frustrating.

Before I even went to the GI I had started to keep a food log, but it became cumbersome as I felt like almost anything triggeted my symptoms.sometimes something would trigger it one day but not the next.

The doc said to stay on the gluten-free diet.

nvsmom Community Regular
nvsmom
Posted

.... I felt like almost anything triggeted my symptoms.sometimes something would trigger it one day but not the next.

 

That was very true for me before I was diagnosed, and in the first year after going gluten-free.  Sometimes I would have symptoms and other times I was fine... Actually I still get like that but with less frequency.

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