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If I Have Celiac, But Test Negative...

whistle

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whistle Rookie
whistle
Posted

Hi again. Thanks, for the help regarding testing. And thanks for all the other info and support that everyone shares on this excellent site.

I tested negative on my blood-test, though I could only get one, rather than the whole panel. I'm going to a gastroenterologist (not the bizarre doctor I mentioned before). I'm hoping doctors aren't too out of touch with celiac around here. I'm in a small city on the Canadian prairie. In the summer it's surrounded by wheat, barley and rye so far as the eye can see.

The more I read, the more I'm convinced I have celiac disease. I just keep coming across more indicators. I read an article from 2006 saying there was new evidence that may connect celiac with thyroid papillary carcinoma, which is the type of cancer I had. I saw a picture of a baby's torso and instantly my mothers voice appeared in my head saying, "when you were a baby you had a big barreling chest..." Maybe I'm becoming a fanatic, but I'm so desperate for an answer. I'm also really scared, though, because of how dangerous celiac is, and I already had cancer 23 years ago.

I was wondering, if I actually do have celiac but get negative tests, can that be a good sign, because it means the damage hasn't progressed very far?

Thanks again

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ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortuately no. In fact of the 30% of us that do show a false negative on the panel many of us are well into full blown celiac. For those that do show up on blood testing the panels will show a decrease the longer we are gluten free.

whistle Rookie
whistle
Posted
  • Author

Thank-you, ravenwoodglass!

Wow - 30% - that's huge! Is the percentage of false negatives on biopsies similarly high?

Also, when I described where I live it made me think of another question. Does anyone know if celiacs who live in a grain producing region can react to inhaling particles in the air during threshing time, or if there's a lot of grain processing going on in the region.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank-you, ravenwoodglass!

Wow - 30% - that's huge! Is the percentage of false negatives on biopsies similarly high?

I don't know. There are a lot of factors though with the biopsy, how many were taken and the lab that reads them are part of it. Also there are changes that are seen before the villi are totally destroyed that are sometimes disregarded. A decrease in scalloping, an increase in eosinophils, a mosaic pattern to the mucosa, a reddening of the mucosa (erythemia) are just of few of the things that can be found. Also damage can be patchy early on and we do have 22ft of small intestine and if the right area is not biopsied then the damage can be missed. Also factor in that for some people with celiac the gut problems are one of the last things to appear. Their involvement might be more heavily into the neuro or skin or joint damage. In which case they might have little GI symptoms.

nora-n Rookie
nora-n
Posted

About the grain dust in areas where they grow wheat and stuff, yes, i have read postings about people reacting.

I aslo read a thread about a Gluten-free Casein-free child in pre-school where the staff got some wheat straw bales for the children to play with, and the child got irritable, tired, the autism got worse and the stomach hurt. The parent had to argue with the staff to get the wheat straw removed and had to explain that celiac children also react to wheat straw...certainly the children were not eating the straw.

There was an article here at celiac.com about scientists who sent out blood of diagnosed celiacs to real labs, and some labs only picked up 50% of them. The 80% sensitivity is only in laboratory circumstances, it looks like...and, in patchy celiac, it is known that the tests are not very good. The 80% are only in serious villous damage, like villous atrophy.

nora

whistle Rookie
whistle
Posted
  • Author

That's very interesting, Nora, thank-you. And thanks again, raven.

I realize I shouldn't diagnose myself before I've even started the diet, but it sure would make sense. A few months after my thyroidectomy I moved away from my prairie home to downtown Toronto (which is a sprawling metropolis). I was very healthy there, other than getting a rash fairly often. Twelve years later I moved back to this grain Mecca, and started to get sick a year later in the autumn. It started with brain fog, then depression. My thyroid levels were normal at first, but about 16 months after getting sick my TSH was flipping right out. It was so high my doctor thought it must be a mistake, but it wasn't. (for those who don't know, high TSH means low thyroid hormone.) I'd never had to change my thyroxine dose before, but after this I couldn't get a decent balance for six years. I asked my endocrinologist why, and all he said was, "Funny diet?". I didn't think I had a funny diet, but an absorption problem would add up to a funny diet. I got a nasty intestinal infection about three years in, and my guts have been a mess since. The TSH has been pretty good for two years, but my recovery has come to a plateau.

I'm sorry if I'm rambling when I don't even know if I have celiac yet. I guess I feel the need to get this stuff off my chest. Your feedback is great. Thanks for listening.

OMG! I just found out I can't get in to the gastroenterologist until July 23rd! I was hoping to start the diet soon. I don't know what to do. Ugh!

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