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How Long Will Villi Damage Show On Biopsy?


boysmom

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boysmom Explorer

I am 100% convinced I am reacting to gluten. The question is what the cause is. I have been gluten-free for about 2 months now and I simply do not think I can tolerate a long enough gluten challenge to be effective. At this point one small cross-contamination leads to a night of misery and 2 days of incapacitating lethargy. I just found evidence in my baby book that looks very likely to me that this may have been an issue when I was 1 month old. *IF* I'm right and I've had this all my life (I'm 47 now) I'm wondering whether the damage would still be able to show on biopsy at this point. Do doctors rebiopsy regularly to check your progress as you recover? if so, how often were you tested and how long was it before your biopsy looked normal again? I guess I'm wondering whether a biopsy would be a waste of time at this point ( and I know even if it had been done before I quit eating gluten it could have shown negative, but I'm trying to guess what the chances are that it would show).

Thanks,

Luanne


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chasbari Apprentice

We finally came to the conclusion I was dealing with Celiac shortly before Thanksgiving this past November and went gluten-free even though I had no diagnosis and everyone was cautioning about how it would prevent a proper diagnosis. Sure enough, the blood test was negative but my doctor was very willing to continue down the diagnosis path because of all the anecdotal information and my initial positive response to gluten-free. The initial imaging they did on my abdomen also showed some areas of concern so the endoscope was ordered. I had that about six weeks after starting gluten-free and the Gastro took one look at the villous atrophy and said it was a no brainer on the diagnosis. This was after the gluten-free Paleo was making me feel much better. Don't know if this helps at all and I think I was very fortunate to have a very cooperative group of physicians throughout the process. Oh, formal DX was given in February. I have not had any follow up imaging or biopsy as of yet and don't think will do any until a year has passed so I am not familiar with what the typical follow up would be.

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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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