Coeliac Symptoms but the blood test is negative

You need to see a GI specialist and have an endoscopy and colonoscopy with biopsys to be certain..  

dairy products always seemed to make me feel ill and the doctors couldn’t understand why as blood tests were normal and i didnt always get diarrhea afterwards, a colonoscopy and endoscopy with biopsys showed i have a lactase deficiency, not fully lactose intolerant though as i can handle it but but cant fully digest it 

Sympathies to you..  The amount of gluten you need to be eating before testing for CD is four serves a day for an adult (equivalent to 4 slices of bread)   for at least 6 weeks. But a blood test could still come back a false negative. You need to have an gastroscopy and small bowel biopsy for proper diagnosis.  Or you could get a referral to a dermatologist and have a skin biopsy to test for Dermatitis Herpetiformis (Look it up on this site..)  seeing as you mentioned you get a rash. That is a condition that is associated with Coeliac Disease and if positive then a gluten free diet is needed.

I had a similar experience.  Was diagnosed coeliac when I had a de-adimated gliadin peptide blood test being offered by a charity running an awareness campaign.  I gave up gluten and my diarrhoea and exhaustion vanished.  Went to my doctor (GP) in UK and told her this and she said 'let's get a coeliac test done again by us  - ie the NHS - for our records'.  I did, and it came back negative.  I hadn't been prepared to provoke the condition - to make lots of antibodies - by eating gluten every day for 6 weeks, but I had only just stopped eating gluten.  Seems to me different tests can make difference to whether you get a negative or positive result.

Just to add to this (I've been on a research kick!) 

As I explained in the first post - my blood work showed my liver function was up as well as inflammation. She said that this time last year both were fine... wait for it... when I was gluten free.

I'm piecing it together here - despite I probably haven't ingested enough gluten for the blood test to come back positive, clearly something is showing up in these results. 

After some reading, there is a very common link with liver function/problems with coeliacs, and while the inflammation levels do not indicate "where" inflammation is coming from (I'll add she said it usually means your immune system is fighting something off.... er... coeliac is an autoimmune issue, no?) it also isn't unlikely that the inflammation is coming from either my stomach, bowel, or more likely the liver if its suffering a bit at the moment. But hey maybe there's a fair bit of it going on everywhere. 

I'm feeling so angry that we, the layman people, are more capable of piecing the puzzle together than someone who has had years of medical knowledge thrust upon them. I do have to admit though, the general practitioner is probably given the worst job in the world - they have to know a bit about everything - and clearly we as humans have limitations on how much we can know about everything. 

I'm going to go back to her and give her some new information for which she can peruse (if she's passionate enough about her job, she will) and request a referral to a specialist who actually knows what to look for. 

But I'm hoping somehow pointing out that this time last year I was gluten free (studies show liver function goes back to normal for most coeliacs after a gluten free diet is approached) and presently she has me eating something that is clearly putting my body through a lot of stress... should have been enough evidence to encourage further investigation, rather than just telling me not to worry about the symptoms - just eat less gluten if it makes me feel better 😠

Hopefully it will mean she has something new for her medical knowledge bank that might save the next person from being sent away to suffer it out. 

You guys are amazing by the way - I've never done forums before but it really does make such a huge impact to hear each other's stories and feel supported when you're not otherwise supported. Thank you!!

When I first had a blood test mine came back negative but the colonoscopy proved positive. (There is such a thing as a false negative blood test). Also I was told you need to eat gluten every day for 6 weeks not 4. The only difference between my symptoms and yours were my ferritin levels were rock bottom and my muscles were so weak I had to use a stick. Years ago I was diagnosed with IBS and it was many years later before Coeliac disease was diagnosed. 

Hey jas,

I am going through something similar.

For months to almost a year I am going through these painful symptoms they started of one by one. Always had these lil spots on the back of my arms newer thought anything by it. Then it started that when ever I drank cows milk I got diarrhea so I stopped and drink almond milk, yet I can eat cheese yogurt and stuff without being effected the same way. My syndromes just kept getting worse I have swollen legs mainly in the summer or hot climate thought it was just that and took water tablets which helped a little not fully tho. And just more stuff kept creeping in now I am crippled with cramps my finger tips go numb ever so often, I am itchy all the time mainly my scalp and back of my neck. We are jokingly call it My it hey and scratchy show if I start scratching I can’t stop. Headaches are the killer and yes mood swings. As I am getting into the age bracket of premenopaus I was tested for that. Results were inconclusive. Then my doc tested for thyroid negative. And the tests just keep on coming back negative. Oh yes and this constant tiredness I wake up tired even after 8 hour sleep at times it’s hard to stay awake in work. 

Now my sister was diagnosed with celiac disease and on grounds of that my doc said it might be celiac or IBS. Not that i want to have either but I fear the tests come back negative again and he decides it’s IBS , but I feel like I have more symptoms then IBS suffers .... I just finally want a diagnose so I can start treatment.