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darlindeb25

My Grandson Ethin............

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I was just reading Jane's thread about her friend's 6 month old baby. It prompted me to ask: Can a baby be born already ill with celiac disease?

Ethin was born on Oct 27th weighing close to 8#. He was a fullterm baby, no real pregnancy complications. He was born Hemophiliac Type D, which the doctor stated happens sometimes and usually corrects itself by 6 months of age. On the Thursday before Christmas, Ethin was admitted to the hospital for a croupy cough. First they were thinking whooping cough, then RSV--both tests coming back negative. At this time, they did find that Ethin does not utilize his protein properly, so he was put on meds for that, then they also determined that he has sleep apnea, so on Christmas Day, he was sent home with his new meds and a monitor. On New Years Day, he was admitted to the hospital again, he had turned blue 4 times that day and the last time his pulse rate remained slow and he still had the cough. The doctors thought that maybe he was not getting enough oxygen to his brain, they did a cat scan and an MRI and found nothing. They did say he has GERD and that his little tummy was pressing on his lungs, causing the cough. (It all happened so quickly, I may have a few of the problems on the wrong date--the GERD may have been at the first hospital stay.) He has also been said to be lactose intolerant, so he was on soy formula. Last week the doctor put him on a special hypo-allergenic formula, he is only up to 10# (just turned 3 months on Saturday) and he does still have the turning blue incidents. I do not know who his doctor is, yet I do know he was in one of the best hospital in the US--Sparrow. I do not doubt the care he received in that hospital.

When I was on vacation, I was not allowed to meet my grandson, the mother and my son are not together at this time, even though they seem to be. At any rate, she wouldn't let me see him in December, yet she calls all the time for advice. I just wonder if any of you have ever known of a baby born ill with celiac disease? So many problems fir such a tiny guy. I will add, I have not disregarded the fact that the mother is a smoker and loves her drink, which could also be Ethin's problem.

ethinma1.png


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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if the baby is consuming gluten, then yes, they can have Celiac at such a young age (through breastfeeding or formula, hypothetically). if there is no gluten, then they still could have it, and it not be triggered yet.

No matter what it is, Deb, I hope that his health improves. Poor little guy! Please keep us updated.

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Hi Deb,

I feel so bad about all the poor little guy has already had to go through in his young life.

It's possible for him to have had Celiac triggered--do you know how he's been fed?

I'm also sorry about how his mom treated you when she wouldn't let you even see him. That must have broken your heart. Thank goodness they have you, though--I know that you'll keep doing whatever you can to help.

I hope the situation improves soon :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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From everything I remember reading (I can't search for links right now) a child cannot be born with celiac because even if the mother has been eating gluten, the child still has not been able to develop the antibodies. It's my understanding that it's simply not physically possible that young.

richard

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Deb,

Have you read this article?

https://www.celiac.com/st_prod.html?p_prodid=1139

It states that researchers believe that 1 in 118 Spanish children are born with Celiac.

To clarify what I meant in my earlier post, I was referring to Celiac possibly being triggered by his diet since birth--or his mother's if breast-fed. I also took into consideration his illnesses and other health problems.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Hi there deb,

I didn't read the article yet, because I'm really busy lately. However I'm also on the german celiac self support message board and over there they already know, that babies can be actually born with the celiac disease. The birth triggered it most of the time, because the birth is not only traumatic for the mother, it's traumatic for the child as well. And as we know, a stressfull experience, accident or traumatic surgery can trigger celiac disease. The only hassle is, that it can't be figured out until the little ones actually eat gluten for the first time.

Hope this helps, Stef


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

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Thank you, all of you. The spanish babies is a surprise and I might add here, my kids are part Puerto Rican too. Stef--that was also very interesting. At any rate, he could be tested for the genes, couldn't he? It's all so hard to understand, I feel so bad for him.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thank you, all of you. The spanish babies is a surprise and I might add here, my kids are part Puerto Rican too. Step--that was also very interesting. At any rate, he could be tested for the genes, couldn't he? It's all so hard to understand, I feel so bad for him.

Of course he could be gene tested--it's only a cheek swab. That would at least give you more info to go on. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I know celiac disease could be a long stretch for this little guy. I just want him healthy. So many of his symptoms could be celiac related and with my sister, our dad, and me all celiac--his odds certainly increase. I have thought about what all of you said all afternoon. I know that what Richard said--it's not physically possible for someone that young--makes perfect sense too. Yet, so does what Stef said about stress bring celiac on--that makes sense too. I do not even know if I could get them to test him. It's tough being the grandma sometimes.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Oh, Deb, I'm so sorry to hear this.

How tough--for the baby, and for you to hear about it and not be able to help. He's got 2 strikes against him already if she drinks and smokes--and not breastfeeding is a third, though it's probably better that she isn't breastfeeding if she drinks and smokes.

Drinking, smoking, and bottlefeeding are all perfectly legal, though, even though 2 of them obviously put babies at risk.

I wish I knew what to suggest. :(

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I know it is not illegal to drink or smoke, yet it should be while pregnant. Babies are precious miracles and they do not get to pick their parents. They should be safe. I am not upset with her for not breastfeeding him, I never did that either, yet I may have if my child was as sick as he is. I really do not know.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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For me, there is no question. If my baby is there, I will do everything in my power to be able to breastfeed it (I heard, some women can't). Even, if I don't know, if it has or develops celiac. It's my strong believe, that breastfeeding the baby will make it better for the kid in the long run. And I don't believe in any tests, they already did about this. I'm breastfeeding, period! :P


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

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