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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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    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
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      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
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      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
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