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Q1821

Link Between Celiac And Down Syndrome?

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About three weeks ago I had the AFP test (or the triple screen test), which tests for spina bifida, trisomy 18 (Edwards Syndrome) and trisomy 21 (Down Syndrome). I only had this test done because if something is wrong I wanted to be at the same hospital as my baby and the local where I live can't handle special cases. All that to say the test came back abnormal. My odds were 1 in 124. I'm only 22 and this is my first pregnancy (we are having a boy).

I had a ultra sound and the only things they found were his arms (17 weeks) and legs (18 weeks) were behind his head growth (19 weeks). They also found a pocket of fluid in his brain. They said all these things were indicators of down syndrome, however if my blood test had come back normal

they wouldn't have thought twice about the things they found. Also, I am 5' 5" and my husband is 5' 4" and his side of the family is all under 5' 8". The doctors said it could also mean that our baby is just going to be short, but they could say for sure. We aren't getting anymore tests done.

I write all this to see if anyone else has gone through this and if anyone knows if down syndrome is all related to celiac disease?

Thank you all:-)

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Congratulations on your pregnancy!

Here is an abstract on the link between Down Syndrome and celiac: http://www.ds-health.com/abst/a0010.htm

Children with Down Syndrome are doing WAY, WAY better today than they did 30 years ago, both physically and mentally. And that 's even without a gluten-free diet. With a gluten-free diet, I am sure they do even better!

Breastfeeding is also key with these kids, but they do tend to have difficulty, so as you get closer to your due date, if Down still looks likely, PLEASE meet with a lactation consultant who has experience with moms of Down babies, as you will need more help than most to breastfeed, but it will be SO worth it.

There is a little girl with Down Syndrome at my son's school, and she is in all mainstream classes, plays violin in the orchestra, and I see her laughing and talking with her friends. She is adorable.

Obviously, we all hope for you that everything with your baby is completely complication-free. Best of luck!

{{{{HUGS}}}}}

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Congratulations on your pregnancy and I'm sorry to hear about your test results. That being said, as I understand it, those tests have a high rate of false positive results. The tests don't diagnose a problem, they can only uncover the risk for the problems since they are screening tests. Your doctor is right to do the ultrasound and continue to monitor the baby but according to my Mayo Clinic pregnancy book, most babies will be healthy even with the false positive result. Do you have any one else in your families with similar genetic conditions? As the other poster said above, people with Down's live such more normal lives now than they did 15 - 20 years ago. Good luck with your pregnancy!


Diagnosed with Celiac Disease February 2007

Finally feeling better than ever!

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Congratulations on your pregnancy.

As Fiddle-Faddle's link said, people with DS are more likely to have celiac disease. I believe that it is recommended that they be screened on a regular basis reguardless of whether there is any family history. You didn't say it like this, but I have not heard of a link where someone with celiac disease is more likely to have a baby DS.

Was your ultrasound a high resolution ultrasound? If not, you may want to look into one. They can look for addtional DS markers (at mine, they measured the length of the pinky, the length of the thigh bone, the amount of fat on the back of the neck and a couple of other things). They can also look for a heart defect. I don't want to scare you, but a lot of DS kids are born with heart defects from minor to major. They might be able to give you a heads up on things to come or they might be able to tell you that they don't find any physical markers.

I would suggest that you make contact with a local DS support group. They are everywhere! And the people are wonderful!! One of the best things I ever did for myself was to go to a DS family picnic. There I watched and saw that these families were NORMAL families. Kids fighting over sharing! Mom's chasing after kids to get them to eat something! Loud Play! Mayhem! Everything you might expect when kids get together. :lol: It did my heart good.

Good Luck and Take Care of Yourself


Janet

Experience is what you get when you didn't get what you wanted.

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My middle son has Downs Syndrome and celiac disease :)

Yes, because he has Downs he was more likely to get celiac disease (or any other autoimmune disease) especially as his Dad has celiac disease BUT having celiac disease in the family does NOT mean you are more likely to have a baby with DS :)

The only 100% proof you are going to get that your baby is Downs at this stage is by amniocentesis.

I had the 'triple test' but I wasn't flagged as a risk at all (I was 22yrs) - didn't know he was Downs until he was born ...a BIG suprise :lol: ...but what JOY he brings us!!!!

I also had the 'triple test' when I had my third son and I WAS flagged as high risk (age 25yrs) :blink: .....he had nothing wrong with him.

I think what I'm trying to say is that (other than the amnio) none of these tests ARE conclusive - but on the other hand it is wise to prepare yourselves.

I'm sure ante-natal screening has improved since my last baby 12 yrs ago.

PM me if you want to :)

Take care & good luck!!!! :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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Congratulations on your pregnancy.

As Fiddle-Faddle's link said, people with DS are more likely to have celiac disease. I believe that it is recommended that they be screened on a regular basis reguardless of whether there is any family history. You didn't say it like this, but I have not heard of a link where someone with celiac disease is more likely to have a baby DS.

Was your ultrasound a high resolution ultrasound? If not, you may want to look into one. They can look for addtional DS markers (at mine, they measured the length of the pinky, the length of the thigh bone, the amount of fat on the back of the neck and a couple of other things). They can also look for a heart defect. I don't want to scare you, but a lot of DS kids are born with heart defects from minor to major. They might be able to give you a heads up on things to come or they might be able to tell you that they don't find any physical markers.

I would suggest that you make contact with a local DS support group. They are everywhere! And the people are wonderful!! One of the best things I ever did for myself was to go to a DS family picnic. There I watched and saw that these families were NORMAL families. Kids fighting over sharing! Mom's chasing after kids to get them to eat something! Loud Play! Mayhem! Everything you might expect when kids get together. :lol: It did my heart good.

Good Luck and Take Care of Yourself

Thanks Janet

I did have a level 2 ultrasound and they checked all the things you said above; he had no problems except what I said in my orginal post. Thanks for the idea about the DS support group.

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I just want to say that those ultrasounds can be very wrong. I know a little boy who was supposed to be severely handicapped. When his mother had an ultrasound towards the end of her pregnancy, they told her that it showed he had extremely short limbs and a severe heart defect. At his birth, all kinds of doctors were there to look after him, and to whisk him away for immediate life-saving surgery.

They were VERY surprised when they examined him after birth, and there wasn't a thing wrong with him! He is a very healthy, normal, smart, adorable five-year-old now.

Thousands of people prayed for him before birth. So, either it was a true miracle, or the interpretation of those ultrasounds was just way off.

I am just telling you this so you realize that even though it is possible that your son will have problems, he may be perfectly fine. I hope that it is the latter.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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