Thrillrose

Great info! Thanks so much. 

Hello, 

Two of my children have been diagnosed with coeliac disease. I was tested as well and my TT IgA and deamidated gliadin were both normal but the IgA was deficient. 

My dr said that doesn't mean much. But then my sister was tested and her result was the same as mine! Her dr told her to cut out gluten as she obviously has a reaction to it. 

And then of course I start googling and find out that her dr seems to be correct. And that if we don't cut out gluten now, coeliac disease may develop. 

Does anyone know any more about this??

thanks 

I have a packet of Icing mixture here and the ingredients state sugar (sucrose) and tapioca starch.

If I read those ingredients only I would assume it is gluten free. However underneath it says it contains gluten. How does it contain gluten??

 Or is it like on lollies where the only ingredient is glucose syrup from wheat and it still says contains gluten, even though it doesn't.

Thank you so much for all your replies I really appreciate it.

My daughter has been on a gluten free diet for quite awhile now so I know an endoscopy won't work for her. The gi was going to trial her again when she turned 2, but with everything else that has happened I think I'll just keep her on the diet.

My son is back on a gluten-free diet and he says he feels much better, so I think I will skip the endoscopy.

Thanks again

My son recently had blood work done and at the end of November his pediatrician gave him a celiac diagnosis just off his results.  

Tissue Transglutamise IgA Abs  35  with results between 7-10 borderline <7 negative

Gliadin deamidated IgG Abs 15 with 7-10 borderline and <7 negative.

I just don't feel comfortable having a lifetime diagnosis with one blood test. The only issue he's had is constipation, which started at the time of toilet training, when he would hold it in. This was at 2.5yrs, he's now 8. He's otherwise fit and healthy, has grown well etc.

He was tested due to his sister having very low positive results. 0 on the TTG IgA and 16 on the gliadin.

None of my other children have tested positive, I have 6 altogether and neither me or my husband have it either.

Can you tell for sure off these tests?

I recently saw a product, chocolate coated marshmallows, that in the ingredients list stated Glucose Syrup (Wheat). Every other ingredient was safe, to the best of my knowledge. I understand glucose syrup to be gluten free.

However, at the end of the ingredients list, it stated in the allergens list that gluten was present. Would they write this in regard to the glucose syrup just to cover themselves?

I am fairly new to celiacs, two of my children diagnosed in the last few months, so I'm still learning. Thank you! 

All the research I have done tells me that even if glucose syrup is derived from wheat it is so highly processed that there is no detectable gluten.

My daughter who was fairly recently diagnosed, she's 12 months old, yesterday ate some dried fruit that said it had wheat derived glucose syrup in it.

And today she did one of her big, loose bowel movements reminiscent of before she was diagnosed. Is it possible that it was the wheat glucose? I'm so careful with everything I give her, so I'm a little upset by this. 

It's so hard with this age.

Yes the diet does seem to be helping. She has started to put on weight, quite rapidly actually. She was really tiny, below that curve they have in the books, and is now back up on that curve. Her bowel movements have become a lot more regular and are more solid now.

So, I guess that's my answer then right? The positive gliadin test and the improvement on the diet means that she does have celiacs. Given her age and the fact she'd need a general anaesthetic to get the endoscopy done I think I will opt out of that.

Thank you for your replies, I really appreciate it.

Maybe I'm reading this wrong due to not having enough coffee, but based on the numbers supplied, her daughter's IgA levels are in the normal range.  Also, young children often test on the low side for IgA and then that normalizes as they get a bit older.  I don't see anything out of the ordinary with her total IgA.

 

Thrillrose---with a child that young I think getting a biopsy is important.  When she starts schools, having the positive biopsy will be very important if you need accommodations in school for her.  I'm also wondering if you just got her results back or if you are just now asking questions.  That is a long time to have to wait for results.  What symptoms is your daughter having that prompted the testing?

I got the results not long after testing, but I'm headed back to the paed in a couple of weeks so have been looking into the results a bit more in depth. At the time the paed gave a 99% sure this is celiacs. My daughter had been on a gluten-free diet since that day.

I guess it's kid of hard to come to terms with. I have five older children with no obvious digestive issues. There is no celiacs in my family or my husbands. It seems to have come out of the blue.

She was tested due to failure to thrive. She did not put on any weight from 6-10 months. However she was prem and is a very high energy child.

I also worry now that if we do the endoscopy it will be false negative as she will have been gluten free for at least 2-3 months.

Welcome to the board. Your daughter has a very low total IGA which would account for the negative with the first test you listed. The one test that is positive is one that is very reliable. Try not to think of this as a life changing diagnosis as much as a life saving diagnosis. You are fortunate that she has been diagnosed while so young though it probably doesn't feel that way right now. Read as much as you can here and ask any questions you need to ask. Do be sure to test yourself and other family members even if you don't seem to have symptoms. 

 Oh really? I didn't know that (about being the most reliable test), thank you. I've been tested and was negative. I'm about to make appointments for my other children to get the blood tests done too.

Hi, 

I'm new to all this, my daughter who has just turned one has been given a celiac diagnosis from our paed. I just wanted your thoughts on her test results

Tissue Transglutaminase IgA Abs   <1            (<7)

Gliadin (deamidated) IgG Abs            H16       (<7)

Immunoglobulin A (Total IgA)           0.18         (0.08-0.53)

So only the 1 test that came back positive. Is this enough for a celiac diagnosis? The paed referred her for an endoscopy but apparently there's quite a wait to get that done, and she even said that I may choose not to do that. The blood tests were done when she was about 10 months.

I guess I'm concerned about a complete life changing diagnosis being based on one test. Would there be any use in perhaps even repeating the blood tests?

Thank you!