Negative coeliac test results
Posted , 19 users are following.
Hi everyone! I've just found this forum and am excited to possibly be able to talk to some people who can empathise with my symptoms!
I have just had a negative blood result for coeliac and have been told categorically that I don't have cd. But I have so many symptoms (listed below) that I am suspicious that the result was wrong. I am seeing the dr again next week and am going to ask for the biopsy.
In your opinion how often does blood test show a false negative and is a biopsy likely to be a false negative too?
My symptoms have all been present for at least 5 years but some for up to 20 years.(I'm 35 by the way!)
Chronic fatigue (I sleep all night plus at least 4 hours in the day and still feel exhausted)
Pain in my joints especially hands, legs , hips and shoulders.
Ibs and vomiting.( black and foul smelling stools)
Restless legs
Bad skin but not the blistering
Brittle nails
Ear infections
B12 deficient
Anaemic
I'd be really grateful for any comments you may have!
Thanks
Sarah
1 like, 20 replies
IHaveAHunch sarahr78
Posted
Hi Sarah. I think it's quite likely you have CD. I certainly don't think blood tests are always accurate. I found out I had it only 18 months ago when I went and got a de-amidated gliadin peptide blood test done as an offer at Coeliac Awareness Week. It was positive. I then went to my Gp and she said 'why not get an NHS test done too?' I did. That came back negative. It doesn't bother me as I know I cannot tolerate gluten and will carry on avoiding it. Before I gave the stuff up I had terrible diarrhoea, exhaustion and mouth ulcers. Now I'm 100% cured of those three conditions. I hope this helps.
patricia_11100 sarahr78
Posted
I'm trying to figure out if this is what I have as well. I think they take your gallbladder out without really knowing if that is what's wrong. I had mi e out June 2015 and still have the same pain plus other things that you have mentioned. I've been to umpteen doctors and I've had no good results.
michelle4196 sarahr78
Posted
Hi Sarah!
This thread is very old.... 4 yrs old but if you're still on this forum sometimes, I would really like to hear if you got better and if the Drs finally figured out your needs. Your symptoms, especially the fatigue sounds a lot like mine although it sounds worse than mine is now.
Best wishes,
Michelle
erica74956 sarahr78
Posted
So just a little back story: I am in my mid 20s and in July began experiencing VERY ITCHY bumps. The first time I had them on my back. I went to my doctor who thought the bumps were shingles or more likelyherpes. She gave me an antibiotic but essentially said there wasn't much she could do. I was horrified.
After that every couple weeks I would get 1-3 bumps either on my ankles, knee, elbow, shoulder, even a canker sore (which I read can be a side effect of dermatitis herpetaformis...linked to celiac disease.) As the extremely itchy bumps would disappear it seemed another would appear! So frustrating. The rash first presents as itchy, red, and hot and then blisters and heals in about a week.
After doing my research I started to see that Celiac disease often presents as herpes, occurs in many of the areas I had experienced the bumps, is itchy, and may not necessarily present with digestive symptoms, although I do have a sensitive stomach. I returned to my doctor who continues to believe that it is herpes but did take blood to test for celiac, lupus, along with a full kidney and liver pannel. She did tell me dermatitis herpetaformis is linked to herpes (which is not what I gathered from my own research).
I am worried my blood test wont come back accurately and that I may go undiagosed. Has anyone else had a similar experience or have any advice?