Negative Coeliac

Hi Sineadd Sorry to hear that you are feeling so unwell, I know what it is like to feel ill all of the time and you have my sympathies.

You are right you should have been eating more gluten before the blood test.  It is such a shame you werent told about this as I apprecaite starting to eat it again will be very daunting.  I have copied the information below from the CUK website for you as i wasnt sure I could post links. The advice is to eat gluten for at least 6 weeks, therefore If you are going back to the doctor in 6 weeks time and want a diagnosis I would start eating gluten now so that you can ask for another test, good luck with it, you can call CUK up if you need any professional advice on the best way to incorporate the gluten into your diet, their number is 0333 3322033

Keep eating gluten throughout the diagnosis process

If you think you may have coeliac disease, it’s essential to continue eating gluten until your doctor makes a diagnosis.

The diagnostic tests for coeliac disease look at how the body responds to gluten. Some people may start to reduce or eliminate gluten from their diet because they feel ill. Unfortunately this is very likely to cause an inaccurate result for both the blood test and the gut biopsy. Therefore, it’s very important to keep eating gluten throughout the diagnosis process.

If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yoghurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate.

We understand how hard it is to get diagnosed if you have started a gluten-free diet. Getting a medical diagnosis, however, is important to ensure you get the medical follow up and support that is recommended for people with coeliac disease. Unfortunately, there are no other tests that can diagnose coeliac disease other than the antibody blood test and the gut biopsy. These tests depend on people eating gluten.

 

I would not be fooled by a negative result.  The initial test only tests for certain antibodies produced when you eat gluten, but some people produce different antibodies and so of course show up as negative.  Also you do have to have eaten significant amounts of gluten every day for 6 weeks before your test.  I have tested negative for coeliac, but my daughter has coeliacs.  I came off gluten about 9 months ago and my health has improved dramatically:  - more energy, 80% less headaches and migraines, no more acne on back and face, less aching in my muscles.  Now if I eat even a tiny bit of gluten I get sick and end up with crippling tummy ache and migraine.  I pretty much know I'm coeliac but I cannot put myself through 6 weeks of my life being awful just for a test.  Yes I could get some free food, but honestly it wouldn't be worth it!

I have Cd diagnosed in 1998. My grandson had all the symptoms but blood tests always negative . They then did a gene test and found he carried the gene. You cannot get CD if you haven't got the gene but you can have the gene and you may not develop CD.He then had the biopsy and it was confirmed. His younger brother ( who also has some of the symptoms especially very low iron levels although he has to take iron tablets twice a day)  has now had the gene test and if positive will have to  have the biopsy.Having said all this the GP's were not familiar with the gene test. The boys were under a paediatrician because of failure to thrive and very low iron levels.His words to my daughter last week were that he would stake his reputation on the younger one also being CD but they needed a definate diagnosis. They were both under the GP for a couple of years and it took this long to be referred to a paediatrician specialising in the symptoms they had. The good news is, is that the older one has been GF for 6 weeks now and is like a different child. Appetite, energy levels, roses in his cheeks etc.It is hard to watch the younger one so lethargic and always ill and know that he has to persevere with the gluten at the moment. My daughter was told that he had to eat a considerate amount 3 times a day to ensure that the biopsy showed up the flattened villi. The advice from the paediatrician was that my other daughter's children should be tested because although they do not have the same symptoms and appear healthy ,2 of them are not reaching the expected height and he said it may be because of malabsorbtion of nutrients.Have no idea if my ramblings will help , but good luck.

You still may have it! Firstly, you need to be eating gluten for at least 6 weeks. Also blood tests for coeliac disease are not that reliable. An endoscopy with biopsies are the most reliable way but you must also eat gluten for at least 6 weeks before that too. At least you will be seeing your specialist, do discuss all these things with him. Best of luck!

Hi, Sineadd!  As you suspected, your test results can't be considered conclusive.

I've heard, however, that a diagnosis of DH is considered a valid positive test result for CD. Please see a dermatologist if you think that you have any Dermatitis Herpetiformis, as that alone MAY be enough without continuing to consume gluten for the next few weeks...

Has anyone had this experience? Do we know anyone who has had a diagnosis of DH and was therefore ruled to have CD? 

Sineadd, it sounds like Coeliac to me.  I was diagnosed three years ago at Stanford.  Fortunately, they have a well respected doctor teaching the medical staff about the latest in Coeliac.  She too suffers from this disease. My "levels" are very rare and so she took my case. My suggestion: DO NOT GIVE UP CHECKING AND BEING TESTED.  It is miserable, I know. On the average it takes about 18-months to adjust lifestyles. You'll find the time much shorter if you continue to communicate with those of us who are "pros."  All the best to you!