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Infant Diagnosis


averyannsmom

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averyannsmom Rookie

I've been lurking around the different forums, and from what I can tell it sounds like celiac is hard to diagnose if there isn't extensive damage. My daughter is having some classic symptoms (as do I), and she is having blood drawn tomorrow. They are testing her for: rice, wheat, oats, peanuts, eggs and dairy (and maybe soy). And a full celiac panel. She is only 7 months old, been eating rice cereal for 4 months and oatmeal one day (and screaming in pain from it all day). I'm wondering if this is enough exposure to cause damage that would lead to a diagnosis. I posted in the "parents of children and babies" under preemie infant allergice to rice? in case you want all the details. I'm afraid if it comes back negative they won't do anything to give me a prescription formula for her and we will have to deal with the pain and diarrhea until she's a year old.

Anyone have an infant with a diagnosis??

Kara


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AndreaB Contributor

I don't know if I have an infant with celiac or gluten intolerance or not. I would assume gluten intolerance. He broke out in eczema about 2 months of age. I underwent allergy testing and found out I was allergic to gluten and soy among other things (see signature). His eczema has disappeared with the exception to small flare ups. When he flairs up I question what I ate that could have caused the problem. He is very sensitive to soy and gluten. I went off soy in February and gluten (except occassional oats and rice dream milk) in April. Now, I've determined to stay off of oats. The family just got results back from Enterolab and we all have two genes that predispose to gluten sensitivity or celiac. I am holding off feeding him solids for another couple weeks if he doesn't get too hungry before then. His weight gain has been good. Didn't have any symptoms of anything except eczema.

Sorry I couldn't be of more help.

TCA Contributor

My daughter had all the classic symptoms to the Nth degree, but drs. refused to test her. She has a heart defect and will have her 2nd sugery this summer. Everything was blamed on her heart. I'm pumping for her since she won't nurse. I went gluten free and 90% of her symptoms disappeared. It was truly amazing. She's 13 mos, but can't tolerate foods yet. She didn't gain any weight until I started the diet. She was 4 mos. old. She then gained 17 oz. in just 2 weeks. Her lethargy cleared, her projectile vomiting stopped, the blood from her feeding tube and vomit cleared and she started to thrive. It was really amazing. The drs. are amazed too, but don't argue with me now. I recently went egg and dairy free because of allergy testing. This is helping her eczema. She still has issues, but is sooo much better. I wish I started it earlier. Good luck with diagnosis. It's hard. Are you getting tested too?

Guest momx3

My youngest has no diagnosis. He had severe eczema from 2 months old, D, all the classic symptoms. At his 1 year appt, his weight went from 50%ile to 10%ile. The doctors weren't sure what to make of it. He's seen an allergist, who did the stick tests, all negative. The ped derm took a look at his skin & said that it was just eczema, and to wash his clothing separately, no fabric softener, etc.... she ordered the celiac panel at my request. It was negative. Unfortunately, I had already started him on a gluten free diet before the test, so who knows what it would have shown? But the diet has been amazing. He's filled out (gained 2lbs in 4 weeks), the skin rash & all of the other problems have all but disappeared. He's got a 15mo checkup next week, I will be talking with the doctor to see what thinks of the improvements. Good luck! From all of the info I've read (most from this board!) it is very hard to get a diagnosis of celiac for a baby, the testing isn't very reliable.

mommida Enthusiast

My daughter was BF and she was having some symptoms before solids were introduced. She had severe constipation when rice cereal was added to her diet. Things pretty much went classic Celiac symptoms as food was introduced. Celiac blood panels are not very accurate for children under 24 months. She only had one slightly elevated blood positive. She was diagnosed at 17 months, by gene testing. (By the way the ped. gastro. now lists her as probable celiac disease because I would not allow the gluten challenge to continue for the endoscopy.)

L.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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