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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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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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