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Question About Testing And Diagnosis

nutralady2001

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nutralady2001 Newbie
nutralady2001
Posted

Hello everyone I have a question about officially being diagnosed with celiac disease

I come from a family riddled with auto-immune disease, although no-one has

been diagnosed with celiac disease. Going back 5 generations at least ( don't have any

info for further back than that) there has been rheumatoid arthritis, Type

1 diabetes mainly. I have Hashimoto's Disease ( immune system killed of my

thyroid gland,) my son number 1 has Type 1 diabetes , daughter has lichen

planus an auto-immune skin disease similar to psoriasis

I went gluten-free about 12 months ago as a trial, after talking to a friend

then re-introduced it to see what would happen........headaches,brain fog

from hell / debilitating fatigue were my main symptoms so I went gluten free

again.

I had to see a gastroenterologist about a month ago as at my last lot of yearly

blood tests which I have every year I was badly iron deficient and had to a

bowel screening as a result. The screening showed blood in both upper and

lower intestinal tract. The doc then gave me the referral to the gastro

I have had IBS since I was 12. When I told the gastro about the IBS and

described the symptoms and told him that my worst year was 1966 when I was

so bad I was on medication which was steroids, he said it was consistent

with Inflammatory Bowel Disease not IBS.

He scheduled an endoscopy and colonoscopy which I had done and he told me

before I left there was no cancer etc and said he would send a letter to my

GP. I knew he had taken biopsies as I got an invoice from a pathology lab

I went back to my GP yesterday to see her and check the report he sent.

You could have knocked me over with a feather when his letter said that

findings of the biopsies were consistent with celiac disease it was highly likely I had

it and to have an antibodies test done!!! I told the doc then I had gone

gluten-free with a few slips. I have been taking the iron tablets for my

iron deficiency and didn't realize that they had gluten in them. I think

from my reading that sometimes gluten is doing damage without any physical

symptoms

Now my doctor wants me back on gluten for a month before the testing for

antibodies.

I am cross now that I decided to go gluten-free as maybe the biopsies would have

been more conclusive....however there have been a few times in the last few

months where I have been glutened , iron tablets and also a couple of times

eating out.

So my question is, is it worth doing this and also is a month on gluten

enough time for antibodies to become active again? Can you have a negative

blood test but still be positive for celiac disease. If the blood test results are

negative do I stay on gluten for 6 months and have another scope ? If I do

have celiac disease then I don't want to do any more damage by going back on gluten for

that length of time Thanks everyone! ...........Meleese x

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hathor Contributor
hathor
Posted

You had a positive reaction to going gluten-free and even after an extended gluten-free period, you had villi damage consistent with celiac. It seems completely unnecessary to go back on gluten to do blood work. There is more a risk of false negatives with blood work than for false positives with biopsies, after all. Biopsies are supposed to be the "gold standard" of diagnosis.

If he isn't sure from looking at the biopsies, then they can be sent to someone else for a second opinion.

I don't know if a month on gluten would be enough to get your blood antibodies up. And what damage might you do and suffering experienced during that time? And for what -- even if the blood tests are negative, this doesn't mean you don't have celiac or that you won't suffer if you eat gluten.

You are the customer. It is you that has to be satisfied, not your doctor. You don't need his permission to stop doing something that makes you sick. There is no danger in NOT eating gluten. If you feel the need for additional testing you could go with Enterolab, which wouldn't require you to consume any more gluten.

Tranquillity Rookie
Tranquillity
Posted

I'm extremely new to all this, but I have to agree anyway.

If the biopsy says you likely have it, AND your genes make the risk bigger than average, AND you feel better without gluten(!), there is really no doubt, is there?

nutralady2001 Newbie
nutralady2001
Posted
  • Author

Thanks....yes after sleeping on it so to speak have come to the conclusion it's silly to have a blood test done and go back on gluten thereby doing further damage if I didn't have it it wouldn't even be on the report ..............I'll change my siggie line.

I am nearly 60 so it looks like there has been years of damage starting when I was 12

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks....yes after sleeping on it so to speak have come to the conclusion it's silly to have a blood test done and go back on gluten thereby doing further damage if I didn't have it it wouldn't even be on the report ..............I'll change my siggie line.

I am nearly 60 so it looks like there has been years of damage starting when I was 12

I am so glad to hear you say this. Your GP is an idiot, IMHO to even suggest this after a positive biopsy. What is wrong with doctors these days! You run a very real risk of a serious reaction if you still have damage after all this time and then do a challenge. In addition to finding an iron tablet that is gluten free, make sure it says that on the bottle also get some sublingual B12, that will help with energy and healing. Make sure with your damage still present in full force that you evaluate how gluten free you are. Watch out for cross contamination and gluten in toiletries, shampoos, hair dye, OTC and script meds, pet foods and litters and such as well as in your diet. Welcome and be sure to check out the board subjects throughly and feel free to ask any questions you need to. Nothing is off limits or too gross when it comes to celiac.

nora-n Rookie
nora-n
Posted

Hi I am in scandianavia, and here in most places in Europe the only valid test is the biopsy, no matter what the antibodies are.

It is absolutely silly to go back on gluten for the blood test as the biopsy is the only proof they need.

Here the celiacs get 300 $ from teh health authorieties for the extra expenses, so it is rally strict. The only proof accepted is a biopsy.

(but my daughter had negative tests and biopsy but got a diagnosis anyway because of the distinct symptoms off gluten vs befoer and during the challenge)

nora

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