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

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


darlindeb25

Recommended Posts

darlindeb25 Collaborator

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


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

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.

jerseyangel Proficient

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 :)

lovegrov Collaborator

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

jerseyangel Proficient

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.

stef-the-kicking-cuty Enthusiast

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

darlindeb25 Collaborator

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.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
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. :)

darlindeb25 Collaborator

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.

Fiddle-Faddle Community Regular

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. :(

darlindeb25 Collaborator

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.

stef-the-kicking-cuty Enthusiast

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

Archived

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

  • 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 replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

    3. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748

    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.