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What Else Could Cause A Positive Biopsy?


JessieFree

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JessieFree Apprentice

I had a positive biopsy and but all my blood tests were normal. My GI said to try the diet FOR 3 MONTHS and if I didn't get better than it was IBS (he says its one of the two but can't be sure which one). He didn't even ask me to come in for a follow up. I went to my family doctor for a second opinion who gave me a food allergy test. It was normal so should told me to go off the diet. As soon as I went off the diet I started getting leg cramps at night again, but other than that didn't feel any worse. I went back on it after a few weeks of lots of gluten. I've been gluten-free for about a month now. I have had no leg cramps but still have the gas/bloating. I don't get diarrhea just constipaton. Does this sound like celiac or are the cramps just a coincidence. I had the leg cramps when I was young but never had any GI symptoms. They stopped for years and just recently came back shortly after my GI problems started. My doctor never told me what could have caused the biopsy to be positive if it wasn't celiac.


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Ursa Major Collaborator

Usually, a positive biopsy means that you have celiac disease. The blood tests aren't that sensitive, and you probably had a false negative.

Your regular MD is an idiot, if he/she thinks that celiac disease will show up in allergy testing, since it is NOT caused by an allergy, but by an autoimmune reaction to gluten. Some people with celiac disease will also have an allergy to wheat, but most don't.

Blunted villi can also be caused by a dairy or soy intolerance. Since being on the gluten-free diet is helpful to you, you do have celiac disease, but may also be intolerant to dairy and/or soy.

Dairy is known to cause gas, bloating and constipation, as can gluten. So, you may either not have managed to cut out all the gluten at this point, or you have other intolerances as well. I would recommend cutting dairy out at this point, to see if it helps.

I also had leg cramps as a kid, and my mother was told that I had growing pains. Too bad that those 'growing pains' (there is no such a thing) didn't go away until I eliminated gluten at the age of 52.

One of my grandsons also had those leg cramps, and they went away when his mother put him on the gluten-free diet a few months ago (he is five).

Guest j_mommy

Constipation is a sypmtom of Celiac!

I agree with ursa major n everything....celiac is not an allergy!!!!Jeeez when will Dr's figure that out!!!!

I would stick with the diet....get your scope pics and records from teh GI you went to and find a different one to look atteh pics!

GFhopeful Rookie

i would say to get a second opinion from another GI too. i am waiting to get a second look at my endoscopy as i had negative bloodwork but positive biopsy too. brfore going gluten-free, i did have GI symptoms after months of not having GI symptoms but other symptoms (dizziness, headaches, bouts of illness). It seemed to escalate to GI symptoms and weight loss before i was finally diagnosed. I am doing better on gluten-free but still having really bad bouts so that's why i am getting a second opinion and hopefully further tests to find out what else is going on. i am not a pushy person and it took some time and pushing from family members to make me follow through with this but i think it will be worth it. is there a celiac expert in your area, like a university or something that you could go to? good luck feeling better.

lovegrov Collaborator

A positive biopsy is pretty convincing. From everything I've read, you shouldn't doubt it.

richard

Nancym Enthusiast

Negative blood work means absolutely nothing. About 30% of celiacs have negative blood work if they don't have total villious atrophy. You're just lucky enough you didn't get to that stage before it was caught.

hez Enthusiast

Based on my bloodwork my family doc thought I had borderline celiac (is that like being a little pregnant?). However, my gi did an endoscopy which showed complete villious atrophy. Fast forward two years, I had another endoscopy, I now have fine delicate villi but my small intestine still looks like my stomach.

It sounds like you have celiac. However, if you need another opinion go get it. Just make sure the doc is well versed in celiac or you may cause more damage down the line with an incorrect dx.

Hez


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  • 1 month later...
Joss Rookie

My doctor told me a positive IgA test was not worth bothering about. I found a gluten free diet helps and is worth bothering about. Find someone who can explain whether it is gluten sensitivity or not. Your health matters both to you and your family.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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