my son has been gf for 2months he's only had a blood test for diagnosis never had any symptoms for cd. is he cd ?

my son has been gf for 2months he's only had a blood test for diagnosis never had any symptoms for cd. but since last few days developed stomach ache. should I stop his gf diet?He has never had any symptoms of cd but because the blood test showed raised levels of antibodies the doctors said he needs to be on a gf diet. Now he has been on the diet for 2 months and started complaining of stomach problems. should I stop the gf diet ?

8 Replies

  • There is a new policy to diagnose children based on blood tests alone if possible... which makes a lot of sense - I wouldn't want to put any child of mine through an endoscopy procedure.

    I think they have to do several different blood tests though, they don't just rely on one, and only if all of them are positive do you get a diagnosis without biopsy.

    I wouldn't stop the diet, but go back and see your doctor. There might be some other reason for the tummy ache. Have you seen a dietician?

  • They did only the one blood test and diagnosed based on the fact he felt tired and had a low iron level. I did question this with his consultant as he is also beta thalassemia trait that could be the reason he is iron deficient but The consultant had made up his mind and now I feel by messing up his diet he now is becoming gluten intolerant. I have started using codex in his diet so possible that is the culprit. Any way I think I am going to go for a second opinion to see a consultant to see if he has been misdiagnosed.

  • Both my children are coeliac. My youngest was diagnosed just on blood tests (raised anti-bodies and coeliac gene) and symptoms. My oldest needed an endoscopy, although he had raised antibodies, the weren't high enough for him to be diagnosed on bloods alone. Both my boys were diagnosed by a gastro consultant. Since going GF both my boys have become sensitive to even the tiniest amounts of gluten. Only last week my eldest glutened himself by sharing crisps with his friend, his friend had eaten toast then put his hand into my sons bag of crisps.

    My eldest had few obvious symptoms before diagnosis, we only got him tested because his brother had just been diagnosed, and it took him longer to get to grips with a GF lifestyle than his brother. This is partly due to age, he is a teenager and I am not always with him to know how careful he is being, also because he hadn't appeared to be having problems with gluten he wasn't being super vigilant. He got lots of tummy aches the first couple of months and I know it was because gluten was creeping in to his diet. Now that he knows how gluten makes him feel he is a lot more careful.

    I would suspect the tummy aches could be due to the fact he is far more sensitive to gluten now he is GF. Have you seen a dietician? They could help analyse his diet to see if it is somehow getting into his system. Don't forget gluten can also get into the system from non food sources, a friend gave my youngest some playdough to play with, if he'd put his fingers in his mouth that would have been him projectile vomitting for the afternoon.

  • thanks for that I will be speaking to his consultant.

  • Hi,

    If you are sure it is not your son sneakily eating gluten or having gluten accidents, then it is possible that he may have become (or all ready was) sensitive to another food group altogether. It is very common for this to happen.

    Once gluten is removed the other intolerance(s) become more obvious. Coeliac disease messes the guts up and consequently the gut absorbs things it shouldn't do.

    I am intolerant to gluten (I am coeliac) and all dairy as well. Three months on from my initial diagnosis, I was still not feeling right on a gluten-free diet. Once I figured out that dairy was causing gluten like symptoms, I stopped eating it and have felt better since. I strongly suspect I react to casein which is a protein found in milk.

    You need to go back to the GP/dietician and ask for further help. I would not take him off a GF diet (EVER!) if he has a coeliac diagnosis. If he is a coeliac it is critical he maintains his gluten-free status.

    You do not need to have had symptoms to be a coeliac. Many Coeliacs get no symptoms at all - they are asymptomatic. Looking back, I was asymptomatic in childhood which went on to last for about 15 years - I did not present with any of the 'normal' symptoms which was why I was missed. It took another 18 years on top of that to get diagnosed!

    I hope this helps you.

  • Thank you for your response, my dilemma is he had no symptoms prior to gf free diet, he is very vigilant about what he eats (more than me), I think you are right some other substance is causing him tummy aches I will definitely speak to his consultant again. I have been reading about codex and that it also can be a culprit. Thank you all for your responses.

  • Hi Mohsin,

    Good luck with the consultant. It is worth going but you may find trial and error with your sons diet ultimately more effective. Sorry to be so sceptical about this. It is because on my recent gastro consultant follow up, the guy was more interested in if I was maintaining a gluten-free diet than my other dietary (dairy) issues. I was disappointed not to have been given more support from this direction. I sincerely hope you get better treatment!

    I have tried Codex wheat starch foods such as the breads and found them to be very tasty. However I do now avoid them because of the risks involved in eating them - I know 20 ppm is considered gluten-free by the Codex standards, but that still means there are trace amounts of gluten lurking in it. At the end of the day this is personal preference but I think it is a sensible idea to consider withdrawing these foods for now.

    Dairy is a very common intolerance, but you may find he reacts to a variety of things. I am in the process of evaluating if I need to remove soya from my diet because I think I may be reacting to that as well (I'm using the wait 5- 7 days (no soya), then eat soya, see what happens method; repeating as necessary!).

    Other GFG's will tell you about, yeast, nuts, sulphites, nightshades, shellfish, sesame, mustards and many more types of intolerances.

  • Watch out for psyllium husk that is finding it's way into more and more gf products. It really upsets my tum...stomach pains and a need to go often. On talking to a pharmacist I was told that my response to it was quite a common one. I hope he gets sorted soon.

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