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Normal Biopsy - Still Think It Could Be Celiac


Kat L

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Kat L Rookie

I got my biopsy results the other day, and they were normal (6 samples, normal). Other than a mild Schatzki ring and sliding hiatal hernia, the doc said everything was normal and nothing would explain any symptom other than a little heartburn. I, however, am not convinced. I've stopped eating gluten and will give it a month or two, and see how many of my symptoms resolve. I also plan on getting a 2nd opinion from another GI. But, at the same time, I'm concerned that if the GI is right and I don't have celiac, that I could be missing the real source of my problems.

So, I have 2 questions:

1) Is there anything else that can cause B12 deficiency?

As far as I know, there's not eating meat or dairy (which is definitely not the case for me), Grave's disease (I'm overweight, not under weight so I don't think hyperactive thyroid is my deal), and pernicious anemia/lack of intrinsic factor (my primary has ordered a test for intrinsic factor in February along with follow-up B12, so we'll see if that's the case pretty soon). Is there anything else that's a possible cause? My B12 was at about 300, and that's with me periodically (not routinely at all) taking a B-complex vitamin supplement.

2) When you get glutened, generally how long is the delay between eating gluten and a reaction?

I've been gluten free for 8 days so far. I haven't had my most common symptom, which is really extreme bloating, all week - that is until last night after dinner when I blew up like the staypuff marsmallow girl. I went through everything I ate all day yesterday and I'm sure I didn't any gluten. Then I realized that the day before I did totally gluten myself. I had one of those green Superfood Odwallas for breakfast and didn't check the label at all- like a total bonehead, I thought it's just juice! no gluten to worry about. BUT, that was about 36 hours before I got the bloating. So, is it possible that the Odwalla caused my bloating? Or is this all a coincidence? Either way I'm going to stay off gluten and in another week or so purposely test myself with something gluteny.


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mushroom Proficient

Perhaps there was wheatgrass or barley grass in your Odwalla? Most people do not react, but some do.

Kat L Rookie

Perhaps there was wheatgrass or barley grass in your Odwalla? Most people do not react, but some do.

Yes, there was wheat grass, barley grass, and wheat sprouts in the Odwalla. Like I said, it was a bonehead thing not to check.

DavinaRN Explorer

My understanding is it can take up to a few days to react to gluten. Also you may not have celiac, you could just have non-celiac gluten intolerance. Same symptoms, negative blood and biopsy results.

nvsmom Community Regular

Low B12 can (as far as I know) be caused be a gluten intolerance, not just celiac. Also, H. pylori, infections and parasite (liketapeworm and Giardia lamblia) can cause low B12. I've also heard that people who take a lot of stomach antacids can have such reduced stomach acid that it makes B12 difficult to extract from foods.

I would react to gluten with a stomach ache within the hour, but I also ended up bloated in the evenings even if I ingested gluten hours earlier.

Hope you feel better.

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      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. 
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      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.
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    • 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.
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      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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