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Question For Families

Ronnie701

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Ronnie701 Newbie
Ronnie701
Posted

Hi

I'm new and reading up on celiac disease before my appointment for tests. I have a 19 year old daughter who has down syndrome and was VERY surprised to read that people with DS have a high chance of being born wit/developing celiac disease.

I want to know if there are any other parents who have DS children/relatives?

During all of my daughters 19 years they've regularly tested her thyroid, but nobody in the medical profession EVER mentioned she could be celiac, malnourished or recommended a gluten free diet.

Thankyou in advance for your feedback :)

Ronnie

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Darn210 Enthusiast
Darn210
Posted
Hi

I'm new and reading up on celiac disease before my appointment for tests. I have a 19 year old daughter who has down syndrome and was VERY surprised to read that people with DS have a high chance of being born wit/developing celiac disease.

I want to know if there are any other parents who have DS children/relatives?

During all of my daughters 19 years they've regularly tested her thyroid, but nobody in the medical profession EVER mentioned she could be celiac, malnourished or recommended a gluten free diet.

Thankyou in advance for your feedback :)

Ronnie

I have two friends that each have a daughter with both DS and Celiac. Both were diagnosed with Celiac around the age of 8 or 10 or so. Neither had outrageous symptoms(occassional tummy aches) or (more than typical DS) growth issues. We have a local DS clinic where the kids are evaluated on a regular basis (yearly?) for developmental and physical issues that DS kids are more likely to develop. I believe (but don't know for sure) that Celiac is one of the things that they are looking out for at the clinic. I know that at our local Buddy Walk, there is always a table with samples and information about gluten free foods. Maybe we just do a good job (locally) of spreading the word to other parents of one of the issues to watch out for.

nikki-uk Enthusiast
nikki-uk
Posted
Hi

I'm new and reading up on celiac disease before my appointment for tests. I have a 19 year old daughter who has down syndrome and was VERY surprised to read that people with DS have a high chance of being born wit/developing celiac disease.

I want to know if there are any other parents who have DS children/relatives?

During all of my daughters 19 years they've regularly tested her thyroid, but nobody in the medical profession EVER mentioned she could be celiac, malnourished or recommended a gluten free diet.

Thankyou in advance for your feedback :)

Ronnie

Hi Ronnie :D - I'm in the UK and my 15 yr old son has DS and Coeliac disease.....and you're right! - he has always been tested for thyroid problems routinely but coeliac screening was never suggested.

In fact, it was only my husbands diagnosis of coeliac disease that really spurred me to get my son tested.

Looking back, my son had on and off had 'loose stools' but never complained of tummy ache .....I suppose the biggest factor was that he would eat like a horse but stay stick thin.

So, after some pushing he was tested (bloods) which were weak positive - then a biopsy which proved undoubtedly he did indeed have celiac disease :rolleyes:

Of course people with DS are at more risk of any autoimmune disease, not just celiac disease (my son also has vitiligo - a skin condition)

I would ask your doc to test your daughter - explain you are having tests and say you understand that she is at more risk than the average person :)

Good luck :)

Ronnie701 Newbie
Ronnie701
Posted
  • Author

Thank you guys

Nikki - I think that yet again, we in the UK are left behind slightly - but thank fully catch up! I noticed this too when I was researching ADHD re my 2nd daughter - Australia & the US had much much more information available.

I look back at my daughters younger life and noticed in pictures that she could never have been regarded as skinny/slender or underweight - always the opposite!

She looked more like a child from Africa - skinny limbs with a distended tummy. Now alas, she's 18 and at college ... having a fantastic time but has her own control regarding the foods that she eats - so now she's very overweight.

Can celiac disease affect people the other way? Can they become so malnourished that they become overweight/obese (I beleive my daughter might be in this category now)

She can eat for England - then like me, falls asleep for 2-3 hrs after eating

As a young child I would 'crash' after lunchtime and the playground supervisors would watch over me whilst I'd sleep on a bench or step. At 13 mum sent me to weight watchers - where I then only ate at night (obviously not what was recommended) because I just felt better during the day - could stay awake and focus on my studies. Later I developed Bulemia & Anorexia- which I put down to a kind of self medication - I just felt better

Ok - I seem to have gone off at a tangent - sorry guys

Anyway - I'm going to arrange for her to be tested too.

Thanks, Ronnie

nikki-uk Enthusiast
nikki-uk
Posted

Ronnie - it is totally possible to have coeliac disease AND be overweight.......there are many, many people here who struggled to get their diagnosis 'cos their docs didn't believe they could have it :(

I don't know how up-to-date your daughters docs are but I push to get her tested - you need to rule it out :)

( :lol: OMGosh!! - yes my son also eats for England!!!)

annofthejungle Rookie
annofthejungle
Posted

My son has Down syndrome. He also has leukemia so the six months of diarrhea he had we assumed was due to the chemo. He had negative blood tests for cleiac and a negative biopsy, but the only that stopped the diarrhea was a gluten free diet.

There's a great website with health care guidelines for people with DS, but it only recommends a celiac blood test at age 2 which is strange because everything I've read says the blood test can be unreliable before age 5.

Here's the link to the website:

Open Original Shared Link

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