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Anyone With A Congenital Heart Defect?

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I posted this under the parents' forum and thought I might get more response if I posted it here. Sorry if this is repetition for some of you:

Our 2nd child was born with a congenital heart defect and had open heart surgery at 9 days old. She's now 9 mos. and will have another surgery in April. The nutritionist kept pushing formula even though I was pumping and giving her breast milk through a feeding tube. They wanted to provide her with more calories and they almost killed her. After 4 months of unbelievable GI issues, a nissen surgery to stop reflux that came undone in a month, and no weight gain, I went against all the doctors wishes and took her off of all supplements and gave her only Breast milk. This helped, but she still had issues, like blood backing up into her feeding tube from her stomach. I tried to get the doctors to listen when I suspected Celiac, just as we did in our son and everyone wanted to blame her issues on her heart. Again, I ignored their advice and went on a gluten free diet myself and gave her exclusively breast milk. She gained 17 ounces in the first 2 weeks. It was amazing at the difference in her personality and health. She was extremely anemic and had to have many transfusions and no one really had an answer as to why. Her last blood work showed her hematacrit and hemaglobin levels to be through the roof and the only thing we can attribute it to was the gluten free diet and only breast milk.

Has anyone else had a similar experience? I have found medical journals that say celiac has a higher incidence in people with heart defects and wondered if I'm alone in this battle. My current mission is to educate her cardiologists about this so that other kids may be helped. Many kids with defects have trouble gaining weight and it's blamed on their hearts, but I suspect that is not always the real reason.

We just found out our son also has celiac (after 2 years of testing). He's 3 and in his 4th week of the gluten-free diet. he's diarrhea free for the first time in his life. He was tested for everything before and had 2 negative biopsies, but his IgG and IgA are very high, so we think we've figured it out. His Celiagene test came back today and was positive for both DQ2 and DQ8 genes. Our daughter tested positive for the DQ2 At least we finally have answers!

Sorry this is so long, I've just got a lot on my plate and not many answers. Please help!

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Hiya

My Little girl was also born with a heart defect and we too have have trouble with gluten.

We have had the tests done for coeliacs and found that she is clear of that but there is still definate differences in her mood and health after having gluten.

All the heath professionals look at me as though I'm just a neurotic mother going off on one, but I know there is something wrong with Holly and Gluten.

I did read somewhere that due to the heart defect they can show more allergies than "normal" kids, due to the immune system not being as effecient as it should be.

I am going to try and look more into that before I go for my next Paed appointment

Hope your little one is doing better

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Rileth,

So glad to hear from you, sorry you're having the same issues, but glad to hear from you nonetheless. I had given up on getting an answer to this post. How old is your daughter? Megan will be 14 mos. next week. Her heart surgery was postponed because she has a pnuematocele in her lung and they wanted to give that time to shrink. It's scheduled for August 15, but we may be there sooner. She's starting to show some signs of heart failure. We're going to the cardiologist weekly for checkups between now and then.

I have accidentally gotten glutened a few times and Megan always shows the effects of it. The drs. looked at me like I was crazy for so long, but they now believe me. I took meticulous notes when going gluten free and made a chart with the date and her weights. You can't argue with the data and it's been enough to convince them that she has issues with gluten.

Please stay in touch and let me know how things are going. I have a link to a paper mentioning a connection btw. celiac disease and heart defects. Fiddle Faddle also has a son that had heart surgery as a baby.

Does your daughter have any remaining surgeries? I hope she is doing well now. Let me know if I can help in any way.

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Good luck for your daughter health and surgery...

i was looking on net for Celiac Disease and heart issue..then i found your link..

My daughter is also have the same story..she is almost 6year...

when she are 2 - 1/2 year in Apr/May 2003 we had her two surgery for Mitral Stenosis as UCSF every thing went well but after 2-3 year also she is not gaining weight.

Then our Doctor started thinking in other directions and they felt she having Celiac...then biopsy proved that its only 1st week we started the gluton free food for her. But now its more tuff for my wife becasue we have to Vitmine K because she is on coumadin and also now see gluton free......

i never understand why small kids only get these type of problem...??????????

God bless them...

I posted this under the parents' forum and thought I might get more response if I posted it here. Sorry if this is repetition for some of you:

Our 2nd child was born with a congenital heart defect and had open heart surgery at 9 days old. She's now 9 mos. and will have another surgery in April. The nutritionist kept pushing formula even though I was pumping and giving her breast milk through a feeding tube. They wanted to provide her with more calories and they almost killed her. After 4 months of unbelievable GI issues, a nissen surgery to stop reflux that came undone in a month, and no weight gain, I went against all the doctors wishes and took her off of all supplements and gave her only Breast milk. This helped, but she still had issues, like blood backing up into her feeding tube from her stomach. I tried to get the doctors to listen when I suspected Celiac, just as we did in our son and everyone wanted to blame her issues on her heart. Again, I ignored their advice and went on a gluten free diet myself and gave her exclusively breast milk. She gained 17 ounces in the first 2 weeks. It was amazing at the difference in her personality and health. She was extremely anemic and had to have many transfusions and no one really had an answer as to why. Her last blood work showed her hematacrit and hemaglobin levels to be through the roof and the only thing we can attribute it to was the gluten free diet and only breast milk.

Has anyone else had a similar experience? I have found medical journals that say celiac has a higher incidence in people with heart defects and wondered if I'm alone in this battle. My current mission is to educate her cardiologists about this so that other kids may be helped. Many kids with defects have trouble gaining weight and it's blamed on their hearts, but I suspect that is not always the real reason.

We just found out our son also has celiac (after 2 years of testing). He's 3 and in his 4th week of the gluten-free diet. he's diarrhea free for the first time in his life. He was tested for everything before and had 2 negative biopsies, but his IgG and IgA are very high, so we think we've figured it out. His Celiagene test came back today and was positive for both DQ2 and DQ8 genes. Our daughter tested positive for the DQ2 At least we finally have answers!

Sorry this is so long, I've just got a lot on my plate and not many answers. Please help!

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Suri,

I'm sorry your little one is having similar problems. I do hope she does better soon. Megan is scheduled for her next surgery next week. going gluten-free made a world of difference for her. I hope you see improvements soon! I have found one paper documenting a connection with heart defects and celiac. There are a few other parents on here with kids who have gone through similar situations. Let us know how the diet is going. this is a wonderful support group.

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Guest Robbin

Suri, I don't have a child with heart problems, but I will be praying for your little one as well. I wish I knew why children have to suffer in this world, but I do think God gives them to special people he knows will love and care for them properly. Take care :)

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