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Hair Loss And Swollen Glands In Kids With Celiac?


Jen-1984

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Jen-1984 Apprentice

Hi, I am new here, looks like I am pretty well in early diagnosis of celiac disease with a positive DGP test and my son has been experiencing some strange symptoms and I was looking for anyone whose child maybe going through the same whose child was dx'ed with celiac.

It all started when he was about 2, he started getting swollen glands all over the neck. I was worried and took him to his pediatrician who did blood tests and all came back normal. Then about a year later I noticed more popping up so his doc had him referred to an ENT who decided to do a biopsy of the nodes which came back clear for cancer and they were mainly suspicious of lymphoma.

They said the nodes were reacting to something, but they didnt know what and that he would most likely grow out of it. About 8 months ago, my son began acting differently also. He would get extremely hyper, and I know kids are hyper, especially little boys, but this was not normal. He was so full of energy that he couldn't stop running around the house and had a very very hard time sleeping. My husband commented about it saying he was very worried he has ADHD. I also noticed that he was sweating in his sleep profusely and he would often complain of ulcers in his mouth hurting while he was trying to eat.

I took him to another pediatrician in the same office as his main doc who looked at the ulcers in his mouth and she said it could be autoimmune related and that she had never seen anything like that before. But she said autoimmune disorders are very hard to dx in kids. He gets reoccuring mouth sores quite often.

My husband just pointed out the other day that he had bald spots on his hair, and I dismissed that thinking he just inherited my fine, thin hair, but today I noticed a patchy bald spot at the top of his head. Now I am franKly worried. I have been having my own health struggles and barely had one test come back positive as I said earlier in my post that indicates celiac disease. I want to know if any of you parents have had similar issues in your kids who you found out had celiac disease or possibly an allergy to milk, lactose or anything else. ANY input is so welcome and thanks in advance.


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Cara in Boston Enthusiast

Your son should be tested anyway, because of your positive blood test. For us, the only symptom my son had (at age 5) was a drastic change in behavior. However, we have noticed that since being gluten free, his sleep habits are much better and his hair has changed completely. Went from fine and limp to thick and wavy.

Before I was diagnosed, I would get swollen glands and my hair was falling out at an alarming rate. I thought I was just getting old. Most of my symptoms went away immediately after going gluten free, but my hair took about a year to get back to where it was before my symptoms started.

Behavior changes and mouth sores are both common symptoms of celiac in children. I would get him tested, and then try the diet (regardless of the results) and see if he feels better being gluten free.

Cara

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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