Coeliac/ Gluten intolerance

[Frustratedartist]

Just in case anyone can help...
One of my 4 children has had problems with food since babyhood. He was very difficult to get onto solids, had constant diarrhoea from early months onward, mild failure to thrive, abdominal distension, night sweats, mouth ulcers, and occasional unexplained rashes at his knees. There is a family history (including him) of food and animal fur allergies.

By the time he was 6 he was like a child you see who's suffering from malnutrition. I realised it could well be Coeliac. Unfortunately, even though I had him referred to GI I also started him on a wheatfree diet before he was seen. He was probably wheatfree for 4 months, with immediate improvement, then back on wheat for 6 weeks (2 slices bread a day) before coeliac testing. The test was negative - but I was told he had a wheat allergy because IgE was high & to keep him wheatfree. The actually allergy test for wheat was negative.

4 years later of Freefrom foods & DS started to want to stop avoiding foods. I had him re-referred, and this time he was out back on wheat for 4 months and then had an endoscopy. He was fine for the first 3 months, then started to get his old symptoms back. The endoscopy and biopsy was negative for coeliac.
We were told the diagnosis was gluten intolerant, non coeliac

My question here arises because- a Pathologist friend has said after 4 years on a Freefrom diet DS's gut would be so healthy that he would need longer than 4 months of wheat for it to react to gluten and break down
Also the GP doesn't seem to believe the existence of a diagnosis of gluten intolerant non coeliac.

So basically, I'm confused. My son definitely has problems when he eats wheat/ gluten and definitely thrives when he avoids it
Any ideas?

Does it really matter? If he is healthier on a gluten free diet then that is what he should stick to. My DD was diagnosed Coeliac at 2 yrs old and is now 13 and is one of the fittest healthiest most food aware children around. We as a family had to adapt early on to cooking from scratch rather than using any processed foods so as a result we all eat a healthier more nutritious diet.

Gluten free food has come a long way in the last 10 years with wide ranges available in every supermarket and general awareness is much higher. She can even now go to Pizza Hut with her pals after a movie and have a gluten free pizza!

My understanding is that the biopsy is the definitive test, so if it is negative then he is not medically diagnosed Coeliac, but may still be gluten intolerant.

I may be coeliac but haven't been tested as I stupidly gave up gluten and can't face going back on it. Anyway in the allergy clinic they tested me for an allergic response to gluten or wheat, tests came back negative, but the Doc said that if something makes you ill in the way gluten does with me (v. bad tummy cramps, diarrhoea) then you clearly shouldn't be eating it.

Have you thought about casein intolerance - if his problems pre exist gluten then this might be another possible explanation?

Ds is intolerant to gluten, he eats very well. Gluten free lasagne is gorgeous, even if I do say so myself

I would suggest contacting Coeliac UK for advice. They are very helpful and obviously know a lot about this kind of thing. It is my understanding that 4 months on gluten would be enough time to cause sufficient damage to the gut of a coeliac and a biopsy is indeed the 'definitive' test so it does sound unlikely that your DS is coeliac. However, he clearly has a problem with gluten and non-coeliac gluten intolerance is still a recognised condition (despite what some medical professionals may say). Living gluten free really isn't that bad and well worth it if it makes your DS so much better. Sadly he probably won't be able to get gf food on prescription (unlike coeliacs) but thankfully all the big supermarkets have good gf ranges and more restaurants are offering gf options now too (mainly the Italian chains for some reason).

I know it doesn't matter on a day by day basis, and we do eat really well on a gluten free diet.
It's more for him to know what's wrong with him- he won't always be 10 years - and I feel guilty for having messed up the diagnostic process.
I just wanted to know other people's impression- some people seem very clued up about coeliac here.
I think it probably isn't coeliac - but wanted to know if gluten intolerance non coeliac was a recognised diagnosis. I thought it was- but was a bit thrown by my GP pouring cold water on it.
(I did try for clarification at the last hospital appointment- but the Consultant was running late and didn't seem that interested or helpful)

As a practical question - can you join Coeliac UK just being gluten intolerant? It would be useful to have an up to date info on gluten free restaurants etc

My recollection is that they recently changed their membership rules so that you CAN join without a formal diagnosis of coeliac disease but do check with them. I'm pretty sure they answer queries whether you're a member or not too. Here's a link to an interesting article on Coeliacs Matter about non-coeliac gluten intolerance: www.coeliacsmatter.com/digestive_conditions_coeliac/cd_causes_general/cd_causes_gen_articles/ncgs-gluten-terminology-03-12.html

Sorry, here it is again:
www.coeliacsmatter.com/digestive_conditions_coeliac/cd_causes_general/cd_causes_gen_articles/ncgs-gluten-terminology-03-12.html

Thank you for the link. Interesting reading

When your son had his last biopsy did they test his blood as well?
The reason I ask is my son was diagnosed with coeliac disease this summer without an endoscopy. His blood tests and symptoms were enough for the consultant to give a diagnosis.
I can completely understand why you want an official diagnosis. With my son it was less than 2 weeks between me suspecting he had coeliac and the gastro consultant giving us the go ahead to go gluten free, however he was very ill, (losing weight, vomitting, loose poo, chronic fatigue and rash behind his knees) and my family couldn't understand why I was keeping him on gluten whilst it was making him ill. For me it was important for him to know for sure as he gets older. I wanted him to know why he has to have his own food at parties, why he can't have a McDonalds when he's a teenager and out with his friends, why he can't have a beer down the pub. Also in the future their may well be medicines available to help when he is gluttened or to enable him to have gluten.
The only advice I would offer is don't take any notice of your GP when it comes to coeliac, my experience of the past 6 months is that most know very little about coeliac. See a gastro consultant again with a list of questions and don't be afraid to be pushy or demanding. I'm normally a very laid back and happy to wait to hear back from people, but in this instance I challenged GPs, and always made sure their was a named doctor I could speak to if I needed to chase anything up or had further concerns.
Good luck and I hope you get some definite answers

I believe they took routine blood tests, but not specifically for Coeliac. Which to me was a missed opportunity & lacked common sense.

I would ask for a genetic test for coeliac. Although it can't give a positive answer ( you can have the coeliac gene, but not develop the disease), if it comes back negative that would rule coeliacs out.

I believe they took routine blood tests, but not specifically for Coeliac. Which to me was a missed opportunity & lacked common sense.

I did ask about genetic testing- but was told it wasn't available in this area. Do you know if I could pay for it privately?

I am sure you could go private, but find out if you can get it on NHS. I'm not sure that your GP could arrange it, but a consultant should be able to.
Your son clearly has a problem with gluten. Your GP doesn't think it is gluten intolerance, the doctor who did the biopsy has said it is not coeliac, yet nobody is giving you any answers. If these doctors cannot diagnose him they need to refer him on to someone who can help.