Son (9) with continuous Coeliac symptoms, but two negative blood tests? I (his Mum) have Coeliac disease. Ideas anyone?

[Glutenfreemonica]

My nine year old son has continuous tummy ache, lethargy, sore limbs and joints, back pain, headaches - it seems from time to time prettying much every thing hurts. The doctors have ruled out CD as he had a blood test when he was three and again recently when he was nine. They say there are no clinical signs other than his reported pain, and have pretty much left us to it. He has been this way since a very young age, perhaps two or three. His pain used to be sporadic, but now it is pretty much all the time. I have coeliac disease, and wonder if he could also have it, but it somehow hasn't been picked up clinically? Does anyone have any thoughts?

[Hidden]

How much gluten does he eat? Out of a family of 6, 3 of us were on a gf diet so the rest of us didn't eat gluten that often. I however developed coeliac symptoms. I had 3 blood tests over 4 years - all negative. My GP has refused to say I have coeliacs - even though my Dad, Brother and one Son all have it - so he has diagnosed me as Non-Coeliac Gluten Intolerant.

However I *know* it is coeliac disease!

My youngest son has never had a positive test - largely because I took him off gluten before the test was finally done as he was so ill - and they have diagnosed him "temporarily" as coeliac "based on reported symptoms". However they have told me he has to have a gluten challenge next year for them to keep the diagnosis in place.

Has he had a genetic test? NHS best practice is now, I understand, that anyone with an immediate blood relative who coeliac disease should be offered the genetic test. If he tested positive for the genes then that should strengthen your case - that's how I managed it with my son.

Are you just seeing a GP or have you been referred to a specialist? I would be tempted to google to find the nearest local expert in coeliac disease and ask to be referred to them.

[kat79]

hi, i am of the understanding that the blood test alone does not always give a correct diagnosis. there is only a percentage of people with coeliac disease that come up positive with this test so to properly rule it out an endoscopy would need to be done. you dont mention if your son has had an iron count done? a continously low iron count can indicate the possibility of coeliac disease. there is also the fact that not all coeliacs present the same symptoms. for eg as a teenager i was taken off my gf diet and told i had grown out of coeliacs and could eat what i liked. however for 4 years i was constantly anaemic, but that was the only symptom i showed, (until a drastic weight loss in a matter of weeks). i understand how you are feeling at the moment, both my children showed signs of coeliac disease from under a year old. doctors tagged me as a anxious mother(i was 22 when my 1st was born) and basically didnt listen. turns out my kids have milk protein intolerances and not coeliacs but it took me a long time to get the doctors to listen. in the end i took specific food stuffs out their diet until i found the one that was causing the prob. then i went and told the doctors my findings, which they werent pleased about and gave me a lecture on. however, turned out i was right and they are now dairy free and much healthier. this may be a viable option for yourself?

[KarenE]

If your son eats a gluten free diet, then has a blood test, it may show a false result. He must eat a normal diet before any tests are done. I had to do this for my son which which was really hard knowing i was giving him food which was making him ill. He also has a really low iron store and takes iron medicine 3 times a day. He is now much better and has grown!

K

[KimberleyB]

I have had the blood tests done and twice they have been negative, however I have now been diagnosed as wheat and gluten intolerant which display similar symptoms. I have also been diagnosed with fructose intolerance which causes my headaches. I diagnosed the wheat intolerance by eliminating it from my diet. Luckily my doctor was very supportive and also sent me for a hydrogen breath test for fructose as I was still ill, this came up positive.

Best wishes

[Sparkey]

I had a negative blood test but pushed for further investigation and the endoscopy confirmed coeliac. I suggest you push the doctor for a referral, I would never have known it was coeliac if I hadn't have insisted.

[sassyl]

I was told by my consultant that as well as being coeliac, confirmed now by 2 biopsies, I am also IgA deficient - which is why I was never diagnosed by a blood test.

In a very basic way, he explained that the blood test relies on measuring how much IgA is out there in your system fighting the gluten. It's rare, but some people (like me) might have 90% of their IgA out fighting, but it's still not enough to register as a reaction to gluten in the blood test because they don't have much IgA to begin with.

Can you convince docs to do a biopsy?

[Glutenfreemonica]

Thank you all so much for your answers and suggestions. We saw a Consultant on Wednesday, who diagnosed Abdominal Migraines. However, thanks to your advice, I pressed for a biopsy, to which I was told the blood test is very reliable. Getting nowhere with that I pressed for a Gene test (thanks to the answers here) and he agreed to do that, but only after I expressed my frustration!!! At least this can either close the issue, or allow us to explore it further. Despite the fact that this site has many people reporting negative blood tests, yet positive subsequent diagnosis on biopsy, it is amazing that every doctor I have seen with him so far, (now GP, local Paediatrician, and now specialist Gastro-intestinal Paediatrician at a top London Teaching Hospital) will not do further investigations. I have already dismissed the diagnosis of Abdominal Migraine, (for which we were prescribed sedatives!) as he has the symptoms all the time, and Migraines come and go. Hopefully now the Gene test will set us on the right direction and either totally eliminate it, or confirm that he should have further tests. Thanks again everyone.

[ladyshelly]

oh my word......i was diagnosed with abdominal migraines as a child & i got my coeliac & colitis diagnosis @ 30....i know that the blood tests are not very reliable @ all & maybe you could consider getting some advice from coeliac uk on your problems with the medics or the british digestive foundation even...good luck with it all

[ladyshelly]

hi your son sounds very like me as a child & this continued until diagnosis @ 30....in my research i found that gluten does inflame & cause aches & pains in the joints & i barely have any trouble any more....please keep pushing to find out

[Glutenfreemonica]

Thanks again for your answers. My son has now been off school since early December. He is pale, in pain, and has no energy. He was hospitalised for 5 days in December due to complete collapse, and inability to walk. Was told by One paediatrician there is nothing wrong with him - take him home. Pressed to see a Rheumatologist due to joint and muscle pain. Rheumatologist diagnosed with Chronice Fatigue Syndrome, and Diffuse Pain Syndrome (bear in mind he is 9). He is now on a gf diet but no improvement so far. I wonder how long he needs to be completely gluten free before we see an improvement, that is if he does have coeliac disease. His gene test showed he does have the coeliac disease gene, but apparently so do thirty per cent of the population! Ideas anyone? Am utterly frustrated! I feel like he is slowly fading away in front of my eyes, and I can't do anything about it.

[Lynilou in reply to Glutenfreemonica]

Im so sorry to hear about your son, you must be so worried. Like others here I too had a normal blood test however my consultant still pushed for biopsy which confirmed coeliac. For a child the test for biopsy might be quite traumatic although can be done under sedation. Can you go through a different gastro clinic or consultant for a second opinion? I don't know where you are but the clinic at Sheffield is reputed to be very good. If it was my child I would probably ask my dr to refer me to a specialist. Hope you find some answers soon x