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09/01/2011, 04:09 PM
Does anyone know what is currently considered the best practice for doing your best to avoid developing celiac disease if you know you have the HLA DQ2.5 gene and a strong family history of auto-immune disease? Gluten free? Low gluten? Normal gluten intake? What if you are already gluten intolerant but not testing positive for celiac disease?
I am thinking both about myself and my children.
I am pretty sure that I, and at least one but possibly all of my children are gluten intolerant, and we already know that there are a bunch of other food intolerance. I was planning to eliminate gluten next and challenge and then proceed from there, but now knowing for sure that I have the gene, my father died of an auto-immune disease and his side of the family is riddled with autoimmune disease (and bowel cancer!) I am a bit freaked out by the idea that if we go gluten free and challenge that we could actually trigger the disease and I don't know if that is a real possibility or not?
Also, and I feel completely neurotic saying this - I had the blood test and gene test for celiacs quite early on in our general elimination diet, we were/are still eating gluten but it was significantly reduced simply due to the restrictions on other parts of our diet. That test was negative for celiacs but obviously positive for DQ2.5. Now the thing is that since then I have been having increasingly odd gut problems, random bouts of nausea, other days bloated (most notable after gluten products this last week), bouts of really foul wind and then diarrhea. Given how restricted our diet is at the moment we don't eat out EVER and because of the strict control of amines in our diet everything we eat is super fresh and frozen immediately after cooking if not all eaten immediately. So there is really no source for food poisoning and given it's now been on and off like this for weeks it's not gastro... The only things I can think of are a) our water supply has changed (we just moved) and maybe the water is causing me a problem or b) after an initial honeymoon period on the diet I am now more sensitive to gluten than I was before? I would feel pretty stupid asking to be retested so soon, but should I be asking? Any other ideas what could be wrong?
09/01/2011, 05:47 PM
I don't think you can prevent CD, you will either develop it or not, I do recommend having regular blood test, my son tested negative and then 12 months later tested positive, although had an inconclusive biospsy and has to be retested again in 6 months.
I had a negative biopsy 10 yrs ago and then a positive biopsy 2 years ago, so it is worth while always having a follow up.
You need to be eating a substantial amount of gluten leading up with the biopsy, if you are not satisfied with blood test you could request a biopsy. it is possible to have a negative blood but positive biopsy.
09/01/2011, 07:39 PM
thanks for that! I know that ultimately I can't prevent it, but i do want to do what I can to minimise my (our) chances and have heard conflicting theories as to the best approach... I'll go chat with the GP about who to ask for a more thorough opinion.
09/01/2011, 08:22 PM
I'm not sure if this will help or not - please do get medical advice. From my understanding - you can have CD but if not eating gluten a biopsy will be normal, hence the reason testing is done during a challenge period. The gastrointestinal mucosa must have gluten to react to, it's like a contact allergy type situation - remove the toxin and you have normal mucosa. The blood test misses I think around 5% of CD diagnosis - it is not foolproof, hence the genetic testing. And yes a negative diagnosis can change. Gee I hope I am making sense! You need to see a gastro-enterologist who is well versed in this stuff. I guess as you have the gene, the chances are high that you will get CD and avoiding gluten (especially as you are already potentially symptomatic) is going to be the best course of action for you.
I hope this helps a little
09/01/2011, 10:34 PM
One of mine has just been tested for the coeliac gene but has been GF since he was 2. He's now 13. He's got a lot of other issues going on ATM and we are trying to tease out whether it is SIBO or fructose malabsorption.
The longterm careplan even if he has the gene is for us to trial him on a low gluten diet if he can tolerate gluten.
10/01/2011, 10:08 AM
Sebela, your problems sound very similar to mine. I have the gene, ds has coeliacs, but I've always tested negative for coeliacs (I get tested every few years). My symptoms have been getting worse, yet still negative, so have decided to go gluten free just to see whether it helps (I'm already low gluten).
People can become more sensitive after going gluten free. Ds seems to be that way. He was fairly asymptomatic before (we found out that he had coeliacs purely by accident when the doctors were looking for something else), now if he has gluten he gets very sick.
I agree that seeing a gastro may be the best course of action if you want to see whether it's really coeliacs or not.
10/01/2011, 09:03 PM
Thanks again for the replies. I am off to see my GP, well not my usual as they are on holidays, but someone else good from the clinic. My dietitian recommends a gastro consult so I will ask for a referral...
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