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Can something besides gluten cause a positive biopsy for Celiac?


skc

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skc Newbie

I've been 100% gluten free for at least 6 years due to "gluten sensitivity".  My bloodwork consistently tests negative for celiac.... in fact my blood work always looks great.  I recently figured out I was iron deficient, and was told to get a colonoscopy and endoscopy.  To my surprise, the biopsy came back as Celiac!!  My question is could there be anything else besides gluten that would damage my small intestine?  I have been gluten free for too long for it to be the reason my intestines are positive for celiac.

 

  • 6 months later...

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Scott Adams Grand Master

Interesting, and this sounds like a trick question. So if you've been on a gluten-free diet for 6 years, can I assume that the blood tests you did were while you were on the diet? That would explain why they were negative. One must be getting a fair amount of gluten in their diet, and be sensitive to it, to have positive blood tests.

So the hard part is how your biopsy could now be positive if your diet was gluten-free? Was it 100% gluten-free? Are you sure you fully understand the diet and all the hidden ingredients? Do you eat out regularly?

Sorry it took so long to reply!

frieze Community Regular

make sure the results were actually yours..

cyclinglady Grand Master

Many things can cause villi damage besides celiac disease:

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

Many celiacs are actually seronegative.  Either you were not diet compliant or something else was causing damage.  Non-compliance is common per this study.  Gluten can be hidden in so many areas.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Posterboy Mentor

skc,

Cyclinglady has given you good advice.

You might also cut out dairy if you haven't already and see if you feel better... a lot of Celiac's do better at least temporarily getting off dairy for a while.

Here is the research on dairy....

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

If you wan to study more about what else can be causing your villi blunting here is a good  recent study from the Mayo Clinic about this topic.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/fulltext

I also had problem with my BP medicine.

Here is a thread about it.

https://www.celiac.com/forums/topic/119462-what-else-can-cause-villi-blunting-has-any-body-had-expereince-with-losartan-and-villi-blunting/

Don't be afraid to re-evaluate any medicines you might be taking. . .it is not well known but NSAIDS can also cause villi blunting in some people.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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