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Babies With Celiac Disease


Sciandra

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Sciandra Newbie

My daughter is 6 months old. She has had issues since birth with her poop. She is exclusively breastfed. Everytime I eat anything high in gluten like pancakes, her poop is nothing but mucous. A few weeks ago I gave her some Gerber puffs, and she had mucousy poop again. I stopped giving them to her. A couple days ago, I gave her some again and the same thing happened. She had her 6 month check up today and instead of gaining her usual pound a month, only gained 7 oz. She is still on her curve but still.

 

They did a tTGA and an EMA today and I should have the results next week. I am 100% positive my mom has Celiac Disease. She is calling for the test next week. If my daughter is positive, I will also be getting my son and myself tested. I don't have any symptoms but my 4 year old does[behavior and not gaining weight]

 

Have any of your babies been diagnosed so young?


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kareng Grand Master

Please read this.

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Sciandra Newbie

I guess I should have added that if the tests are negative, she will be referred to a pediatric GI and Geneticist since her dr said they can do another test to see if she has a certain gene for it.

kareng Grand Master

About 30% of the US population has the gene. Just having the gene doesn't mean you have Celiac. I'm not trying to discourage you. I just want you to know the facts.

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Sciandra Newbie

Its okay! Her dr was completely new to this and was looking it up on his phone right in front of me and mentioned the genetic testing. I don't think he had ever dealt with anyone having a gluten intolerence.

kareng Grand Master

Its okay! Her dr was completely new to this and was looking it up on his phone right in front of me and mentioned the genetic testing. I don't think he had ever dealt with anyone having a gluten intolerence.

The University of Chicago Celiac center is an easy to read site. The doc in charge is a ped GI. There is an email contact address on the site. If your doc has questions, I think Dr. G would like to help. They want to educate doctors.

Mdhriggin Newbie

My daughter was diagnosed at 21 months, and so we kept my son gluten free until he was 12 months. We started him on gluten and within two months he was showing celiac signs, so he was diagnosed then. It is definitely possible especially with the family history and those symptoms


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MommaBecker Newbie

My daughter is 6 months old. She has had issues since birth with her poop. She is exclusively breastfed. Everytime I eat anything high in gluten like pancakes, her poop is nothing but mucous. A few weeks ago I gave her some Gerber puffs, and she had mucousy poop again. I stopped giving them to her. A couple days ago, I gave her some again and the same thing happened. She had her 6 month check up today and instead of gaining her usual pound a month, only gained 7 oz. She is still on her curve but still.

 

They did a tTGA and an EMA today and I should have the results next week. I am 100% positive my mom has Celiac Disease. She is calling for the test next week. If my daughter is positive, I will also be getting my son and myself tested. I don't have any symptoms but my 4 year old does[behavior and not gaining weight]

 

Have any of your babies been diagnosed so young?

My son had his genes activated at 2 month old after problems with Thrush were treated with antibiotics and antifungals. We had a really hard time convincing doctors what was happening. If you can get a positive blood test that will help. Our son was so sick that we didn't wait to do the test and went gluten free immediately. He also has Dermatitis Herpetiformis which may look like eczema to most doctors. I would recommend you get the test, keep a food journal and request a pediatric gi. The wait for them can be months so you will have plenty of time to do lots of trial and error! Good luck. 

Morgans Mommy Newbie

Im pretty sure my daughter has Celiac desease or some kind of Gluten intolerance.  She is only 15mos. but was doubleling over in pain with attacks that would last for 2 hours or longer.  Her condition just recently started at the end of March, and she has not been the same since.  I have removed Gluten from her diet as well as mine and removed Gluten all together out of the home.  She had another attack last Saturday, when she was visiting with a grandparent.  Im not sure what she ate, but pretty sure she was probably Glutened.  She does not ever throw up but she gets very bad stomach pain and doubles over screaming for hours.  Her overall wellbeing has made major improvements since Gluten was removed about a month ago.  She has got a lot more energy and is back to her peppy self.  Also, her growth has leveled off and she is not following her growth curve.  At 15mos, she is only 17.5 lbs and is the size of a 9mos old.  She is constipated most of the time and occaisionaly has diarreah.  She has not had any official testing done yet for Celiac because she is already traumatized from Dr. visits and ER visits, and I understand that this condition is hard to diagnose.  She has had x rays and ultrasound which came back normal.  None of the doctors have even mentioned Celiac desease to me, but I have been researching a lot on the internet.  She also breaks out in hives and has ezema.  I have not been able to confirm exactly was gives her hives but it looks like eggs which have also been removed from her diet.  Does this sound like Celiac Desease?   I feel so helpless when she has an attack and it is horrifying because I can tell she is in extreme pain.  I massage her stomach and her back when she gets one, and Im trying to make sure she does not get glutened.  Is it possible for a baby to develope Celiac at 14 mos?  It appears that this all started after taking her to the ER for a UTI which was pretty traumatic for her.  Im wondering if this traumatic event triggered it.  Any answers or advice I can get would be much appreciated.

momma bee Rookie

Hi Morgans Mom... Sounds a lot like my daughter who was diagnosed at 17 months. Her blood work was negative but she was having surgery for her adenoids and I had a goods ENT surgeon who was suspicious of either esophageal eosinophilia or celiac and got a GI surgeon to do a scope. Had we not had that we would not have known. I hadn't gone gluten free at all before but the issues with weight and the doubling over in pain for sure which i really could not phathom at that age :( my daughter had also virtually stopped growing at 9 months... Similar weights and everything!

Feel fortunate myself we had that Dr who got it investigated! Might have gone through years never even suspecting! Hope you have success with getting her tested! And fingers crossed it is an easy diagnosis and not these complicated some positive sine negative some unclear! At their age the blood tests are unreliable...

The other thing is that she needs to be injesting gluten for the testing to be done.. So the sooner the better before she is off it long?

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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