DS7 diagnosis of celiac?

[Starfish125]

Hi there just looking for some advice. My son (7) is noticeably shorter than his peers and has had diarrhoea on and off for ages but seemed to settle on a lactose free diet. Anyway, friend suggested he be tested for celiac due to his short height as has been known to be a symptom of poor growth and I've found out today his immunoglobulin was way high at 100.20. I'll speak to the doctor tomorrow but since googling, I'm worried it's not celiac and something else as it says immunoglobulin is for all autoimmune diseases,.but the doctor did say he was tested for celiac so does that mean it's definitely celiac as an autoimmune disease? Getting paranoid it might be something entirely different!

The tests to look at for coeliac disease are tTG-IgA, and DGP along with the total IGA. You can’t get a definitive answer with IGA alone.

My DD (aged 6 when diagnosed) was diagnosed entirely on a +ve TTGA - her count was over 250, if I recall correctly. As she was so +ve, she did not require an OGD (camera test). On the other hand, my DS had a TTGA of 45 and had to have an OGD which confirmed changed to the stomach lining and therefore diagnosed as coeliac that way. I would speak to your doctor. Presumably, your DC has been referred to a paediatrician at your local hospital? My DC are under the care of a paed and see her and a dietitian every 12 months for routine checks and blood work (assuming you are in the UK, that is).

My DD was suffering for years with terrible diarrhoea, headaches, heartburn, being of small stature, pale and tired and a bloated stomach. Since being diagnosed, she has actually grown more in a shorter amount of time than she has in her whole life. She looks like a different child since going GF.

Hey! Wow 250 is very high! I thought 100 was bad enough. No not referred to peads (yet) I'm also in the UK, just bloods through the GP who agreed to check it which I'm glad I did now as it does seem to point to celiac. I've got a telephone appointment today at 10am so we shall see what they say.

Hi @Starfish125 yes make sure you get your DS referred to the hospital paediatrician- he will need to be monitored yearly until he’s 16 as coeliac can cause all sorts of issues if it’s not checked. My DS had only one symptom (diarrhoea after weetabix) so his diagnosis was a surprise. Does anyone else in the family (either paternal or maternal) have coeliac? My entire paternal side is coeliac but it missed my dad and myself. It’s a good thing he’s been diagnosed young, as it can cause issues with fertility / growth etc.

Also, be very wary about cross contamination with food. My DD was school dinners and was still suffering with heartburn and headaches, and it turns out that her food was being contaminated either with GF ingredients or by accidental exposure. Once you know what you are doing, it does get easier. I pack my Dc a packed lunch if they go to a birthday party as it’s easier and much less risky. Have you checked out Coeliac UK? They are fabulous and give recommendations of where to eat out etc. lots of supermarket own brand crisps are GF (not walkers / Pringles etc) and sainsburys GF pasta is really nice - you can’t tell the difference! Also, old El Paso wraps (6 for £3) are so nice and a good alternative to the bread, which can be pretty gross. We found toasting it was nicer than having it in sandwiches, and the seeded one has a nice crunch. Promis bread is pretty OK as well.

Okay thanks for the advice! My husband's cousin has celiac but my mum has always suffered with allergies such as egg whites and bread but never been tested herself she self diagnosed IBS.

Yup I've been thinking about that already with parties etc be a lot easier to bring my own stuff, it's such a shame isn't it though at this age!

My best friend also has celiac but also a dairy allergy so she's already told me some great bits to buy and stuff to look out for x

Just so you know, I was almost symptom-free when I was diagnosed at 28. Because I grew up in the carbohydrate-heavy 80’s, my mum had insisted on forcing me to eat weetbix and/or toast for breakfast, sandwiches for lunch, pasta for dinner, etc… thinking she was doing the right thing. I cried every morning saying that it made me feel sick, picked out the sandwich contents and binned the bread, preferred rice instead of pasta, etc. As an adult, I had accidentally avoided most sources of gluten (and no one had heard of coeliac disease either.) My count was 1400. My biopsy showed no significant damage but I was severely nutrient-deficient - esp calcium, iron, B12.

@Poppsidoppsi my DS was diagnosed entirely on a blood test too. His levels were even higher than that. If you are more than 10x the maximum expected level (in my area it’s 7), then there’s little point in subjecting a child to further, more invasive tests. DS’s levels were more than 100x the threshold in both blood tests so there was no ambiguity in the diagnosis.

He had no gastrointestinal symptoms at all. He was referred for migraines and joint pain and the paediatrician tested for coeliac disease. That was more than 6 years ago and the GF diet made such a difference. Looking at old photos now, it’s amazing how tired and sickly DS looked and how much healthier he became very quickly.

He’s caught up in his growth and is now the height you’d expect. He’s resigned to the GF diet, even when it means he can’t join in with things because, on the odd times he’s accidentally glutened himself, he’s felt so terrible. He recognises that he likes feeling healthy so he is very careful in sticking to his diet.

@Starfish125 Coeliac disease is an autoimmune disease but, as others have said, there are very specific blood tests for it. Don’t try a GF diet at all unless instructed by a doctor. It will impede any diagnosis because you have to be regularly eating gluten for it to show up in bloody tests. Even cutting down on gluten is not a great idea because it can interfere with diagnosis.