Coeliac Symptoms but the blood test is negative

Digestive health
1

I've experienced symptoms for as long as I can remember, which are now classified as symptoms of coeliacs disease. 

I went off gluten when I suspected I was coeliac, and the symptoms dissipated: bloating, abdominal pain, heart burn, lethargy, nausea, bone pain, dizziness (somewhat like vertigo), constipation/diarrhoea; the little bumpy rash on my upper arms and legs seemed to go away for the most part as well. When I mentioned it to the doctor she said I'd need to have a blood test but that I'd have to eat at least two pieces of bread daily for four weeks. WELL the first few weeks of that was hell. Everything came back with a vengeance and my mood absolutely plummeted. I was depressed, irritable, couldn't sleep and all of the lovely things I'd experienced before hit me at a stronger force than I'd had them before. 

However, the blood test came back negative for coeliac, B12 was fine, lipids and glucose levels were all fine and full blood count was ok except for the "inflammation levels" which were up, and liver function was abnormal as well. 

I've read a few posts on here from people who had felt disheartened when their blood test came back negative, and I can understand that. - it's not that I want to have coeliacs, but when you tick all the boxes and come out the other side without an answer, it's understandably frustrating. 

The doctor rounded off the whole thing with "maybe there's just something in wheat you're sensitive to", but unfortunately it isn't just wheat, in fact rye is the worst, and everything goes "puffy" the next day (swollen feet, fingers, hands, along with feeling bloated etc). 

I have always felt "sick" even as a kid after wheat cereals, pastas, rye breads, barley/malt, but originally thought I might have been lactose intolerant but I'm confident that isn't the problem. 

I guess I'm just wondering now, what do I do next? Part of me accepted what she said and walked out the door. Then I felt angry. There is something really wrong with my body and I have to just accept it's nothing?

I'm just wondering how many others have had a similar situation and if you could share some of the things you did, or what the outcome was. 

Also, does anyone know if there are specialists or someone other than a GP you can talk to about this sort of thing. 

Thanks in advance,

Jas

2

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 

3

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.

4

Thank you for your response. I will have to look into what specialists we have available (in Australia).

Sorry to hear you've had a similar experience. 

It's quite frustrating when the people who you need to help you find a solution to the problem are quick to dismiss it.

I hope your symptoms have gone or reduced since finding out the cause. Best wishes

5

Thank you so much for your wisdom on this topic. It's a huge relief to find more information. I was told to have two pieces of bread over 4 weeks and I'm not sure I managed to have that (probably because I'd gotten so used to not having gluten), so clearly their guidelines are mixed from GP to GP! 

I will endeavour to find someone who can organise these tests - just to confirm though: I need to have eaten 4 serves daily for at least 6 weeks before getting biopsies done? Or is that mainly for the blood test? 

Fingers crossed I can find someone willing to get to the bottom of it. 

Thank you again smile 

6

I also live in Australia, 

I just explained my dilemmas to the dr and also about my family history with bowel cancer and he reffered me to the local hospital to have the scopes done..

That was a few years ago now though, 

I still eat and drink alot of dairy but really need to stop as im having other health issues lately that nobody i have seen can answer

7

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.

8

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!!

9

Hi  Yes 4 serves daily for at least 6 weeks. I wonder where in Australia you are. If you look up Shepherd Works in Melbourne there is a list of dietitians that you might find helpful. If you are interstate they might be able to put you on to someone in your state. The blood test is not reliable. The only way to confirm coeliac disease is to have small bowel biopsy.

10

I'm on the central coast (between gosford and Newcastle), so Melbourne is a bit out of my way. I guess though as you say, they may be able to put me in contact with someone more local. Otherwise it's probably worth a trip lol

Thank you again

11

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. 

12

It is annoying that so many doctors don't test for coeliac disease. There must be so many people out there suffering. .  Four out of five Australians who have it don't know it!  It should be mandatory for anyone who has mineral and vitamin deficiencies at least to be tested. Also those with depression and those diagnosed wth 'bi-polar' and those with sleep apnoea..!.  Vitamin and mineral deficiencies can cause so many other problems.. often they get treated for those things but don't get to the real cause.

 

13

Yes, more people should be tested. I presume it’s to do with cost, although you can’t put a price on someone’s life; after all, if Coeliac disease is not treated, the consequences can be very serious.

14

That's because we put all our trust in our Gps but at the end of the day, most of them treat symptoms not the actual problem. I suppose we should feel blessed that we have free medical here, but still- as you say, there are probably so many people out there who just aren't aware. Coeliacs doesn't have a strong campaign like diabetes or cancer awareness... it should, and unfortunately without it so many will be walking around with symptoms they have probably just accepted as their norm, or are being treated for a misdiagnosed illness like IBS etc. 

15

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. 

16

It's a really frustrating rigmarole, isn't it! Have you asked for the biopsy (endoscopy?)

I'm sorry to hear about all of your suffering. It's awful 😔 

17

If you ask your doctor for a referral to a dermatologist they can take a biopsy to test for dermatitis herpetiformis.. .

18

I am waiting to get an appointment for a colonoscopy that’s as far as I know. I send away for a DNA test I know it isn’t a diagnose but it would tell me if I have the gene and if I don’t well then I most likely imagining all my symptoms or it’s IBS.