Can someone explain how the gene testing is important? I just got diagnosed with coeliac disease and the GP recommended gene testing for DP before testing the kids. Does that sound right?
Excuse me for post hogging, we have just received our diagnosis and my head is spinning with things to do...
I was just wondering if any of your children go to daycare where the meal is provided and what changes they did/didn't do...
I have been a bit disappointed with DS's daycare a response. Basically the woman who does the shopping (elderly woman related to the day care manager) can't double check labels, will buy the cheapest jar of anything whether it has gluten or not and even rice crackers (which I am pretty sure 99% are GF) they refuse to commit to double checking the label.
She brought a jar of tomato pasta sauce which she assured me was gluten free and i called the staff and asked if one of them could send me a photo of the jar just to ease my mind and there on the back 'contains gluten'
So now it seems I am going to have to supply everything, even rice crackers for peace of mine and continue paying a fortune in DC costs. I understood I would have to provide some things like gluten free bread but I thought they may meet me in the middle somewhere....
What upsets me the most is that the are committed to buying halal meat (not always the cheapest) and make alternate meals for vegetarians/Hindu children... When I asked if they would consider doing the same for Ds I was told 'it will be boring and tasteless and ds won't eat it...' So clearly they are not going to make any effort...
I just don't understand how they can make concessions for religion but not for health. Don't get me wrong I am all for religious needs being met but how do they then justify denying the same to my son???
They should be putting your childs health needs above religious needs imo. Maybe you can suggest brands that are gluten free so they dont have to check the labels, a lot of the homebrand stuff is gf, you'd have to work out which ones. Homebrand pasta sauces are usually gf, as are Coles rice crackers, sakata and peckish. Have you joined the coeliac society yet? Its a great help when you are starting out, I'm not a member anymore because I know what to look for now.
How are you going with it at home now he's diagnosed? I'm slowly getting use it to but just now I was putting some nuggets on for dinner (so unhealthy I know) and laying DD1's out separate to ours and just feeling sad all over again about how different life has to be. It's not fair and I know it could be worse I guess it'll just become 2nd nature in time.
I'm also afraid my DS may notice he's different and he is just at the stage where he doesn't understand... I find myself trawling the day care menu and anything he can't have I make GF so the staff can give it to him as normal. My guiltiest fear is that he will look around and realise one of the kids has something better than him and not know why....
Like you I'm hoping it becomes 2nd nature soon. I also remind myself and my husband that this is only part of our life until DS reaches a certain age.... However this will be apart of DS's life forever....
Have just returned from DS gastroenterologist and I am so confused at how to proceed from here.
DS initial blood serology showed negative TTG and positive (13) IGG. GP referred us to a gastro because she isn't overly knowledgeable on the disease and it wasn't "normal" results to either prove or disprove CD.
Gastro scheduled endoscopy with biopsies and repeat serology and gene test at the same time so we didn't have to get him another blood test while he was awake (that didn't go to plan either because they incorrectly processed his blood and then didn't have enough to complete testing and we had to have more drawn while awake .
The biopsies were all normal - gastro even called pathology and asked them to do more slices and check again. But his TTG is now positive (33) - she didn't tell me his IGG levels as she doesn't really go by that she said as they aren't specific. His gene test was positive.
So she has said he has latent coeliac disease which is yet another aspect of CD different to what they call me (silent). Her advice was to have him on a low gluten diet but that there was no need to be super strict on avoiding gluten altogether.
My head is spinning as I was expecting/hoping for a clear diagnosis not yet more uncertainty. She doesn't want him to be completely GF just low gluten which is confusing me because I've been going by the Coeliac Australia guidelines of completely GF and no traces of for myself for the last 2 months. Now to be told some is ok for him, but if he is like me and does develop full blown CD what if he doesn't show the normal symptoms and does develop intestinal damage and we don't know about it.
Her follow up advice is for repeat bloods in 6-12 months, closer to 6 if showing symptoms, closer to 12 if not.
Sorry if this doesn't make sense, my head is spinning and I really don't know where to go from here with DS. How much gluten is ok and how much is too much? (Not actually expecting anyone to have the answer to this - that's just what is going around my head - although if anyone has information on it I'd be more than grateful).
That is confusing, do you know what the biopsies actually showed? The Marsh changes? There are 4 levels, Marsh one is no damage, Marsh 2 lymphocites and little things like that but no damage to the villi, Marsh 3 damage to the villi and Marsh 4 atrophy of the villi complete flattening. It used to be that they would not diagnose coeliac in anything but a Marsh 4 change, but that has changed. Now, as long as the bloods are positive (which his is) positive genes and a family history they can diagnose coeliac with a Marsh 2 and 3. You need to find a a GI who knows all about coeliac though - and many don't. The other thing to be aware of, intestines are really, really long, like 20 meters, and colieac damage can be patchy - it may be that they just happened to take the biopsies in an undamaged part. Or first GI said he had a chid similar to yours, bloods positive, biopsies negative, he concluded no coeliac based on that - but he just got sicker and sicker, so eventually they ordered a barium swallow - and it showed damage further down - way further than you could get a scope to. But yes, it was coeliac in the end.
I suggest you get the actual results of the biopsy and when you have them, ring the coeliac society and see what they say.
Pregnant for the first-time?
Not sure where to start? We can help!
Our Insider Programs for pregnancy first-timers will lead you step-by-step through the 14 Pregnancy Must Dos!