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I Am Very Confused

Bis-quit

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Bis-quit Rookie
Bis-quit
Posted

Hello everyone, I have quite a few questions as I'm trying to put this puzzle together. Here goes...one fine day last August I became very sick all of sudden. I was having D up to 12 times a day, I went to a GI doctor and they did all the usual testing including a colonoscopy with biopsy. The doctor said "it could be microscopic colitis" based on the biopsy. He put me on a drug called questran and sent me on my way. The D lasted for 4 months, and during those 4 months I did alot of research and learned about the gluten connection to microscopic colitis. So I stopped all gluten and things improved greatly. I then contacted the doctor and asked to be tested to celiac, he ran some blood tests and everything was negative and said no it wasn't celiac.

That doctor has since skipped town and I just went to a new doctor. The new doctor basically called my old doctor a quack and he couldn't believe they didn't do an endoscopy to check for celiac. This new doctor said that blood work alone is not accurate for diagnosing celiac. And he said their is a strong connection with microscopic colitis and celiac and he feels strongly that it is celiac.

The doc wants me to eat lots of gluten for a month and then go in for an endoscopy. I have been eating gluten now for 4 days, and have NOT had any kind of reaction.

Here are my questions....

1. If I was celiac wouldn't the consumption of gluten be causing me some kind of distress by now?

2. How accuate is blood work for diagnosing celiac? Is it possible for all the typical celiac bloodwork to come back negative, but end up with a positive endoscopy?

Thanks for any help you can offer, this whole illness has been quite a mystery.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Your new doctor is much better than the old that's for sure. The bloodwork could have come back negative because you stopped eating gluten. They use the same bloodwork with diagnosed celaics to make sure they are following the diet properly (a negative follow up test indicates they have no active antibodies and therefore have not had large quantitites of gluten contamination). Even on a full gluten diet the blood test are false negative about 20% of the time. This new doctor is much better for advising you eat lots of gluten before your test. I have seen on this board that you need to eat large quantities of gluten for three months in order to get a shot at a positive test result. You may be fine with only a month of a full gluten diet depending on how long you were gluten free. As for the symptoms not returning after four days of eating gluten, give it a week or two. Some people do not have strong reactions (some have no reaction) and reactions can take up to 3 days after consuming the gluten to show up. If your reactions are minor or only culmulative (i.e. the result of many days of gluten) you may not feel repercussions until you are a week or two into eating gluten again. Hopefully you will have a clear reaction eventually or a positive test result to tell you either way whether you should go back to being gluten free.

Bis-quit Rookie
Bis-quit
Posted
  • Author

I should probably add that I was still eating gluten when the blood tests were done.

Your new doctor is much better than the old that's for sure. The bloodwork could have come back negative because you stopped eating gluten. They use the same bloodwork with diagnosed celaics to make sure they are following the diet properly (a negative follow up test indicates they have no active antibodies and therefore have not had large quantitites of gluten contamination). Even on a full gluten diet the blood test are false negative about 20% of the time. This new doctor is much better for advising you eat lots of gluten before your test. I have seen on this board that you need to eat large quantities of gluten for three months in order to get a shot at a positive test result. You may be fine with only a month of a full gluten diet depending on how long you were gluten free. As for the symptoms not returning after four days of eating gluten, give it a week or two. Some people do not have strong reactions (some have no reaction) and reactions can take up to 3 days after consuming the gluten to show up. If your reactions are minor or only culmulative (i.e. the result of many days of gluten) you may not feel repercussions until you are a week or two into eating gluten again. Hopefully you will have a clear reaction eventually or a positive test result to tell you either way whether you should go back to being gluten free.

nuttmegs17 Apprentice
nuttmegs17
Posted

Ok, I am in the same boat - just reintroduced gluten with no MAJOR adverse effects. Made me think i was wrong in suspecting celiac even though everything else points to it.

Are the symptons of celiac more cumulative as opposed to a wheat allergy which would show up right away? Like if I had just a wheat allergy I would most likely be feeling it right now?

ravenwoodglass Mentor
ravenwoodglass
Posted

Intolerances can have a delayed reaction because it can take some time for antibodies to build up. An allergic reaction usually happens really quickly.

Jaymie Jaymz Rookie
Jaymie Jaymz
Posted

My own gluten challenge has been bizarre so far. The first week, all the symptoms came rushing back, and I even spent one Saturday entirely in bed. Then weeks 2-4 were pretty normal and I wondered if I had a problem at all, thinking it was all in my head.

I'm about to finish up week five now, and suddenly I'm experiencing depression, blurry vision, headaches, extreme fatigue, itching skin, fits of rage, and some of the usual IBS junk, though that is the least of my issues. That makes me worry that my biopsy on the 30th will come up negative and be a big waste of time.

But my point is, it may take you a while to really suffer from the troubles you had prior to going gluten-free, so don't give up on it yet. I do think one month might be too short. My challenge is 2 months and I think that might not even be enough, given that my symptoms are just now returning.

I've also seen plenty of people on here who have negative bloodwork and positive biopsies. My GI said that some with celiac disease are seronegative and that's just the way it goes. It's only one piece of the puzzle. He doesn't believe an endoscopy is the end of the line for diagnosis, either, and will move on to a pill cam if the biopsies are negative.

Anyway, hope you get it all worked out. It's a long journey sometimes :) That's why I love this board.

nuttmegs17 Apprentice
nuttmegs17
Posted

Wow hadn't heard of a pill cam before, your doc sounds progressive

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SaraNade Newbie
SaraNade
Posted

A pill cam?? I'm totally jealous; I'm still in the possibility of colon &/or endo scoping, and I am SO not down with that. Also, if I understand correctly, some celiacs never present any symptoms at all...maybe you're turning into one, Bis-quit? It's funny like that.

On a completely unrelated note...I love your avatar, Jaymie; is it a SIM??

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