Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question For Families

Ronnie701

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.