5 replies to this topic

[tummyaches]

I've suspected my daughter and myself both have celiacs or at least sensitivity to wheat. My GP ordered a gene test for myself and it apparently came back negative.

I'm a little confused if gene testing is the same as antibody testing? Also, is a gene test impacted by being gluten free at the time of testing?

I have many symptoms of celiacs, as does my daughter, and we've found that these symptoms abate with a strict gluten free diet. I'm unsure if we should try to find out if we do indeed have it again or if the gene test is a failsafe method of diagnosis, regardless of gluten in the diet.

Thank you kindly

[psawyer]

Welcome!

Genetic testing is not the same as antibody testing.

The gene test looks for markers that are associated with celiac disease. Two are typically checked for--DQ2 and DQ8--although there is growing evidence that others may be associated. Many people carry the genes without ever developing celiac disease. Your genes are your genes and your diet will not affect testing them.

Doctors in Europe are increasingly recognizing that there are cases of celiac disease, confirmed by positive biopsy, in patients who do not have either DQ2 or DQ8.

Regardless, if your symptoms abate on gluten-free diet, you know what you need to do to be well.

[tummyaches]

Thank you for your response. I was just reading about the NCGI and if not Celiacs, my daughter and I have that, for sure. I have so many symptoms of celiacs starting from a young child and during a gluten challenge I ended up in hospital with such severe pain, twice.

I am wondering, does celiac do anything to your bowel? I was having horrible symptoms when going to the toilet and the GP ordered an endoscopy (years ago) to find a possible cause. Nothing was found other than a lot fo pain during it - which they blamed Endometriosis on the outside of the bowel.

What is the consensus here about traces of gluten for somebody with NCGI? Can a Celiac consume something containing a wheat derivative that claims to be gluten free?

Thanks again. I might ask the GP what gene he tested for. I'm in Australia so I'd imagine it is a standard test most Aussie Drs do.

[1desperateladysaved]

Sorry to hear your genetic test was not definative. It sounds like your diet trial was overwhelmingly positive, though. Antibody tests would false negative, if you are not eating gluten. What do you need to prove to yourself and others that a gluten free diet is right for you?

Well, I wish you well in your discoveries.

Diana

[tummyaches]

Thank you for your comments. I don't need to prove anything about this way of eating but I find it difficult to be so demanding about my daughter's diet without being able to say definitively that she is Celiac. I have other children with allergies and it's easier to discuss with the full knowledge there but in this case, I worry that people just perceive me as being over the top given the other child's extreme allergies.

My daughter has been suffering ulcers in her mouth and headaches again so I was starting to question how good we've been with keeping gluten out of her diet versus just assuming it's viral and not related.

Also, my youngest daughter is now 3 and has just started getting dark bags under her eyes and on/off again tummy aches and runs. She's not shown other signs of allergy per se, other than a vague hives reaction to something we can't yet pin-point. She does have mild asthma though so it's likely she has something wrong in that department. I'm just wondering if we should be keeping her gluten free also. She only eats it infrequently, which is why I was wondering if it was the cause of her troubles.

[tummyaches]

I just wanted to update and it turns out both our bloods were for antibodies so therefore are virtually useless, given we were gluten free.

The GP offered to do me another test, with a challenge and even the gene testing if I desired.  He explained exactly what you all did, about how that's not really a guarantee either way and that ultimately it could still turn out to be gluten intolerance which requires the same abstinence.  

He's got my history of bowel and autoimmune etc, troubles and he feels that quite strongly I either have Celiac Disease or the Gluten intolerances and that the testing is really not required if I find a gluten free diet helps.  I felt so reassured by his comments that he's quite up to date with a lot in the Celiac world.

I spoke about the other children and he believes we should just maintain our gluten free status.  I think our third might need to be strictly gluten free if she keeps displaying symptoms although it may prove more difficult as she's quite the food monster.    

Thank you again.  I feel quite resolved about things now and I'm just going to explain to people that we are Gluten Intolerant/suspected Celiacs.  I have found it difficult to justify why we make things difficult with our diet without a distinct diagnosis and now I don't, so thank you all for that.