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Anyone Have celiac disease With A Congenital Heart Defect?

TCA

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TCA Contributor
TCA
Posted

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 BM. 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 believe our son also has celiac. 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 ttg is very high, so we think we've figured it out.

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

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e&j0304 Enthusiast
e&j0304
Posted

Tanya,

I don't really have an answer to your question. I just wanted to say that I am so happy that your kids are doing well on the diet. They are lucky to have such a pro-active mom to try to figure out how to help them! You are right, you do have a lot on your plate and you are doing a great job trying to figure all of this out.

I just wanted to say that I'll be thinking about your kids and hoping that they continue to do well and that you find the answers you're looking for. I still haven't found any concrete, definite answers for my 2 kids, but they are doing well on the diet and that's all that matters.

This is a wonderful group of ladies and I hope someone will have some insight for you in regard to the congenital heart defect/celiac link.

Good luck.

Shannon

VydorScope Proficient
VydorScope
Posted
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.

Hmm intresting, *I* have couple issues, a "Left Bundle Branch Block" and "Low Ejection Faction". I go for yearly scans (Muga, EKG, and Echocardiograms) to monitor it. That was all DX'd before celiac disease. No none cause, they cant even tell me if I was born with it.

Dunno if that helps?

landswithrow Newbie
landswithrow
Posted

My son has down syndrome and was born with AV Canal heart defect which was repaired when he was 5 months old. We also had the problem of no weight gain being blamed on the heart problems. He spent almost all of his first 2 years of life in and out of the hospital, some of that being in the ICU. He had many GI issues which caused aspiration pneumonia then that in turn would cause more problems with his heart. After 4 years of not really any significant weight gain, and his heart and lungs were both doing quite a bit better, they figured out that something else must be the problem. The more we fed him, the more he had diahhrea. Now, he has been diagnosed with celiac and growth hormone deficient. He is 5 1/2 years old and weighs 37 lbs and is 3 feet tall. Most of that growth has been within the last year or so. I hadn't heard the connection between celiac and heart defects though. That is interesting.

TCA Contributor
TCA
Posted
  • Author
My son has down syndrome and was born with AV Canal heart defect which was repaired when he was 5 months old. We also had the problem of no weight gain being blamed on the heart problems. He spent almost all of his first 2 years of life in and out of the hospital, some of that being in the ICU. He had many GI issues which caused aspiration pneumonia then that in turn would cause more problems with his heart. After 4 years of not really any significant weight gain, and his heart and lungs were both doing quite a bit better, they figured out that something else must be the problem. The more we fed him, the more he had diahhrea. Now, he has been diagnosed with celiac and growth hormone deficient. He is 5 1/2 years old and weighs 37 lbs and is 3 feet tall. Most of that growth has been within the last year or so. I hadn't heard the connection between celiac and heart defects though. That is interesting.

Actually I've found more than one source that documents a connection with a heart defect. I've also found many sources that connect it with Down's Syndrome. Below is a link to one. I know how frustrated you must be. We were lucky in a way because my 3 year old son had been having so many problems an we had suspected celiac. Her reaction to formula was identical to his. He had a negative biopsy at 20 mos., so we had ruled it out and then found out the biopsies aren't always accurate in young children. It may sound crazy, but God really blessed us with him being sick. I don't know that Megan would have survived if we hadn't figured it out. If it hadn't been for Cole, we would still be floundering.

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I hope he continues to improve!

Tanya

flagbabyds Collaborator
flagbabyds
Posted

I have a 5 chambered heart, doesn't do anything but... it is still monitered by echos and EKGs every couple of years.

TCA Contributor
TCA
Posted
  • Author

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This is an article that documents the connection between heart defects (and other syndromes) and celiac. I thought all of you might be interested in reading it.

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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