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- trents replied to MTAC's topic in Coping with Celiac Disease1NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS
Looks like from your spellings ("coeliac"), expressions ("bloods" for blood tests) and the lack of timely communication and appointment availability that you must be in the UK. It must be very frustrating to have to deal with such a dysfunctional healthcare system. I hope I haven't offended you. In the UK and in Europe in general, there is trend for... -
- MTAC posted a topic in Coping with Celiac Disease1NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS
My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds... -
- trents replied to lizzie42's topic in Coping with Celiac Disease7
New diagnosis for 3 year old. Help!
I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having... -
- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease7New diagnosis for 3 year old. Help!
Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first! Once they've been gluten free for awhile is it obvious... -
- Jsingh replied to lizzie42's topic in Coping with Celiac Disease7New diagnosis for 3 year old. Help!
Hi, I am mother of a six year old who was organized a year ago when she was fine. to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities t...
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My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds quite regularly and doctors just said she should have her nostrils cuarterized at some point (has had them here and there since a baby - but dad had the same when young so didn't question) Only recently we went to the doctors for tummy pain again and they requested FBC and a coeliac test. The bloods come back with basically abnormal everything, lots of lows, high platelets, ferritin, iron level of 2 ug/L when the range should be 10.3 - 55.8. I was simply told she was anaemic and to take iron - coeliac result apparently hadn't come back at this stage and no follow up from drs. I called a month later to ask for a copy of her blood test results so I could keep them for my own records, the receptionist of the surgery sent them over and included the coeliac testing results ( I had never heard of them coming back with no update etc) he results stated - Tissue transglutaminase IgA level (XaJg2) Above range > 250.0 U/mL [0.0 - 15.0]. - I am STRESSED. I googled a lot and come to terms with maybe they hadn't got in contact because they don't want you to change their diet until further testing had been done? and I was awaiting a paediatric referral. I then made a doctors appointment for a separate issue (UTI) and upon attending the surgery the nurse mentioned the results briefly (baring in mind this is the first time I would have been made aware of the results) and said because the levels are so high I need to change her diet immediately. I was sent away with no more information but that. I requested a call from the doctor to discuss the results and they said it will take 6-8 weeks for a call back. I find a lot of contradicting advice online and in all honestly I don't know what to do. - Don't stop gluten until further testing done, levels being high so I need to stop immediately. As of late I had cut a lot of processed food/sugars out of our diets and my daughters meals were - 3/4 Weetabix of a morning - cheese crackers for lunch. Who knew I was poisoning her with this food at the time? But ever since I had started on these foods she had'nt complained of a stomach ache once. No other symptoms - she is full of energy, long hair, overall healthy but she is a small frame. I did wonder if she was lacking iron as she had darker undereye but I am also anaemic. I can't help but think of the worse. - I have another daughter 15 months younger and have requested her to be tested also as what it states on NHS is recommended - Whether they get back to me will be the next hurdle. My plan is to remove gluten from our household completely. Myself, partner and other daughter can eat it if out of the house but nothing to be had at home with it in. (Of course I would not sit in front of my daughter diagnosed and eat something she can't have). Although I'm hoping to test us all just to clarify further. I don't know where I am going with this, I'm not sure what to do next, is there any further testing I should request or any other things I should be thinking of? At this stage I feel lost with no support and no guidance on what to do now. -
I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having celiac disease and NCGS (Non Celiac Gluten Sensitivity). Although, it is often the case that once you have been gluten free for a significant period, returning to gluten brings more violent reactions. Immunoglobulin A, Qn, Serum is not a test for celiac disease for celiac per se but is a test for IGA deficiency. If someone is IGA deficient, IGA test scores will be artificially low and cannot be trusted. Your daughter is not IGA deficient. Yes, the EMA doesn't get a score apart from being just positive or negative. Unless your daughter is a super sensitive celiac, the biggest challenges will not be keeping her safe in the home but rather away from home. Eating out is the biggest challenge to celiacs because you have not much control over how food is handled back in the kitchen. You can order naturally free gluten free foods but it may be cooked in pots and pans and on grills that are also being used for wheated things. This may be helpful, though some suggest measures in this article may be overkill unless you are super sensitive:
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Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first! Once they've been gluten free for awhile is it obvious when they get exposed on accident? She's improved a lot in the last few weeks even on gluten since doubling her iron dose. Her ferritin has come up so I assume that's why. But she still has the huge meltdowns some days and it makes sense now.
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Hi, I am mother of a six year old who was organized a year ago when she was fine. to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities to exposure to gluten. My daughter is extremely sensitive. And her sensitivities have only gone up in the months since the diagnosis. if there is anything that I can tell you from my experience for sure is that there is a learning curve no matter how careful are. It’s still a process for us- and to think of it that that after seeing her change as a person within three days of changing her diet I thought the job was done. I was so wrong. We opted for no biopsy because the new guidelines in the US follows the European guidelines of no biopsy necessary in children if numbers are greater than 10 times the Normal among with other two positive tests. My daughters number were also greater then 100 and they also had EMA done. My beast wishes to you. I will not lie it’s not hard to take care of a kid with celiac, but once she goes gluten-free and you see your child flourish despite the ups and downs of contamination here and there, it’ll give you enough strength.
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Thank you! This is helpful. I actually read her results wrong. It looks like her tTG test was just higher than the test goes (it only goes up to 100 and hers was higher than that so it just said greater than 100 and 0-3 would have been normal). And the 109 was a different iga test (immunoglobulin A, Qn, Serum). The ema was just a straight positive. I think I'll just move forward with gluten-free for her and have the other kids and us still eat some till our tests next week). How do you completely eliminate gluten from the kitchen? Like the flour shelf, I wiped it all down and got rid of flour but what if one tiny speck of flour got in something, does that derail everything? Is the dishwasher good enough to clean baking bowls, etc? Luckily she loves larabars and most fruits and veggies and rice. Once the kitchen is safe home will be fine. It all makes sense now why she hates waffles and pancakes and always asks for rice for breakfast.
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