Celiac Or Not?

[CathyG]

Hi there,

I have just been told by my doctor that they found an increased amount of lymphocytes in my small intestine during my last colonoscopy. The blood test and biopsies came back negative for celiacs disease, but he's saying that the presence of lymphocytes could indicate a very early stage of the disease.

I've been told to try a gluten free diet for 6 to 12 months and have another colonoscopy to see if that clears it up. I'm not too worried about the diet, I'm happy to try anything if it helps sort out my symptoms (except give up coffee - I couldn't live without coffee )

I just thought I'd see if anyone else here had a diagnosis even when the tests came back negative?

Thanks

Cathy

[ravenwoodglass]

IMHO your doctor gave you some good advice. False negatives are not uncommon and you are lucky that you have a doctor who is taking into consideration the your findings could be celiac in the early stages. Much better than the doctors who tell us to stay on gluten and come back in a year to see if we have damaged ourselves enough for them to diagnose. Do be strict with the diet and hopefully soon you will be feeling better.

[seashele2]

Is that a new way to diagnose celiac? All of my family's gastros had to do endoscopies because celiac damage, thus diagnosis, is in the small intestine and colonoscopies are in the large intestine. I just called my gastro to ask out of curiosity and he didn't know of a way to check for celiac with a colonoscopy. Four of us are already diagnosed, but if they can find it with a colonoscopy now, we'll look for a gastro who knows how to do that for my husband before his next one.

Michelle

Western Washington State

[ravenwoodglass]

Is that a new way to diagnose celiac? All of my family's gastros had to do endoscopies because celiac damage, thus diagnosis, is in the small intestine and colonoscopies are in the large intestine. I just called my gastro to ask out of curiosity and he didn't know of a way to check for celiac with a colonoscopy. Four of us are already diagnosed, but if they can find it with a colonoscopy now, we'll look for a gastro who knows how to do that for my husband before his next one.

Michelle

Western Washington State

You are right celiac is diagnosed through the endoscopy. Since the OP mentioned the small intestine it is likely that the endo was what was done. Some doctors will also do both scopes at once if celiac is suspected.

[CathyG]

Sorry, I should have mentioned that I had a gastroscopy and colonoscopy at the same time. The biopsies he took came back negative, so he's not completely sure what could be causing the increase in lymphocytes. He said that the other possibilities could be an overuse of NSAIDS or a thyroid problem - I haven't taken NSAIDS in a long time and definitely haven't taken them regularly and I've also had my thyroid tested a few months ago which came back ok.

I'm hoping that a gluten free diet will clear up the problem, but it's a bit worrying that we can't seem to work out what could be causing it.