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Beck

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Beck Rookie
Beck
Posted

Hi, I am recently diagnosed with Celiac as is my daughter (via blood tests). My doc said to go ahead and start diet no need for a biopsy, but my daighter doc insists she has a biopsy.

From all we have read it makes more sense to us not to put her through a biopsy. The docs keeps telling us that sth eonly way to conirm 100% she has celiac. With her symptoms, test reults etc, can't we just do the diet for months take another bood test and then go from there?? If her symptoms diappear as well as blood results are better wouldn't that be a sign of confirmation as well???

Feeling very frustrated as no doc will answer that question. If I have it am already having to go on the diet who cares if she has to. Sides if it makes her feel better than I would keep her on it anyway (diet). On top of all this she is a brittle diabetic so that adds to the issue of not wanting to put her though another procedure.

I know the biopsy is quick and she would be sadated, but the whole ordeal is just to tramatic for her. Any one feel the same or know of anything diffrent, does this make sense????

Help?!!! Just want to get going on the diet and start feeling better, but obviyusoy can't do that until we decide if we are going to do a biopsy.

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kbtoyssni Contributor
kbtoyssni
Posted

You've got the right idea. You have a positive blood test - that is an official diagnosis. The scope is an invasive procedure with some risk. I don't see a reason why you should have one if you can commit to the gluten-free diet without it. A positive scope will only re-prove she has celiac. A negative scope just means she doesn't have enough damage to her intestines yet (a good thing, IMO!) or the doc didn't do enough biopsies.

There's a lot of incorrect and outdated information in the medical community about this disease. Do your research and make your own decision. You may want to consider a different doctor for your daughter if this issue is always going to be a fight.

nikky Contributor
nikky
Posted
You've got the right idea. You have a positive blood test - that is an official diagnosis. The scope is an invasive procedure with some risk.

My biopsy was negative, but my GI confirm the diagnosis anyway.. even though he would of been happier if the biopsy was positive (hes thinking about challenging it in a few months). So IMO, you should skip the biopsy, she doesnt need to be put through that , either it would be negative and the doc would say you are wrong(and shes suffered for nothing) or its positive and the doctor tells you something you already know. Try her on the diet, if she improves then theres your conformation. Good luck ;)

Cinnamon Apprentice
Cinnamon
Posted

I found out quite by accident that gluten was bothering my kids, and took them off it myself, and then talked to their doctor. The doctor said that a positive dietary response was the best test there is. He said he could do blood tests and biopsies, but the main thing is if they are reacting to gluten, and you take them off it and they are improved, that is the best test there is. Just keep them off it. It doesn't matter what you call it, celiac disease, gluten intolerance, whatever. I don't have an actual diagnosis for them since i just followed his advice and kept them off it, and just told their school that they can't have gluten. The school has been good about it and not asked to see doctor's reports.

It doesn't matter if it is celiac disease, or gluten intolerance, or leaky gut syndrome, whatever. Gluten is hurting them, and that's all I need to know.

Sometimes I wish I had an actual diagnosis, since it isn't an easy diet to do, and if I could just say, "look, you have celiac disease" it would be easier on the kids. But they see the effects, and know they are better off without it. If it's only a leaky gut type of thing, they will be able to eat a normal diet sometime later after things heal up. But for now, it's gluten free for us. And we don't have any biopsies.

happygirl Collaborator
happygirl
Posted

Keep in mind that the endoscopy also looks for other things, besides Celiac, that may be occurring.

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