3 Yr. Old With Celiac And Still Not Gaining/growing

[jaimek]

Hello,

My son is 3 1/2 years old and was diagnosed (via blood test) with Celiac about 5 months ago. I was diagnosed with Celiac in 2004 as well. My son weighs only 26 pounds (he still wears size 2T clothes) and he hasn't really gained anything or grown since April of this year. He had his bloood work redone and the numbers have greatly improved so we know the gluten free diet is working; however, we can't figure out why he has no appetite and is not growing. We currently go to the Celiac clinic at CHOP and they have told us that we can keep chasing our tail or we can get an Endoscopy/Colonoscopy to rule out any other problems that might be occurring. My son did have constipation issues, but we now give him Miralax everyday which seems to help regulate him. Prior to the mirilax (even on the gluten-free diet) he would cry in pain when trying to go to the bathroom and when it finally came out it was enormous.

Anyway, I guess my question is, does anyone else have a similar experience? Being strictly on the gluten-free diet (we only have gluten-free food in our house) and still having weight gain and growth issues? If so, what else could possibly be the problem? I have severe anxiety over getting the endoscopy and colonoscopy done on him. The prep alone seems so unfair for a child. How do I know he is not just a regular 3 year old who doesn't like to eat and he will just grow at a slower pace than his peers? It is so frustrating because I feel like it is trial and error and I rely on these doctors because I don't know where else to turn. How do I know he doesn't need growth hormones?

Sorry to ramble on, but any advice would be greatly appreciated! I am so upset over this whole thing and really just want my little boy to be happy and healthy!

[Dixiebell]

We also had to do Miralax for a while, maybe two months. My son had a x-ray that showed severe constipation. He was still eating gluten at the same time. When we took him off gluten completely, the constipation and alien-like bowel movements stopped. We have also had to stop dairy. At first I thought dairy was causing the constipation, now I have allowed him to have some cheese and it causes diarrhea everytime. I was concerned about his viatmins so he started taking Yummi Bears multi vitamin and mineral(blue box) and also a gummie calcium and vit.D combo. Something else I have always done with my son is to have him go to the bathroom about an hour to an hour and a half after his last meal of the day. Sometimes he gets done quickly and sometimes he takes a little longer.

We decided to not do the endo. and just try the diet. I feel that it would have been negative or not enough damage yet.

My son is also small for his age. He is about a foot shorter than everyone in his grade. I hope he will catch up soon.

Some things to maybe look into- Does he eat a lot of processed foods? Is he still having dairy? Is he getting too much soy?Alot of gluten-free foods have soy in them.

I will have to say, my son is doing so much better now and he is happier.

[Leah's Mom]

Just a thought . . . . are you sure all medicines that your son takes are gluten free . . . including the Miralax? We've found that most vitamins, stomach and pain meds actually contain gluten(they use it to bind togther the ingredients in solid pills and thicken liquids.) If you call the manufacturers directly and they can guarantee no gluten is present, perhaps try giving liquid probiotic acidophilus on a regular basis. Vitamin World brand is even labeled as gluten-free. I swear by this stuff for straightening out intestinal flora (although it won't cure Celiac's, it can stabilize other conditions and it is perfectly safe for kids (even in large amounts)and tastes like flavored yogurt.

I agree, from experience, an endoscopy is hugely traumatic (especially the anesthesia part). If you already know your child has Celiac's, it hardly seems worth the risk of anesthesia . . . just my opinion.

I would guess your child isn't growing, because they are still not completely gluten-free. Accidentally ingesting shampoo with gluten could even do it (try Suave Naturals- they are gluten-free and inexpensive). Keep in mind also, that it takes a while for villi to grow back (at least 6 months), in order for your child to absorb nutrients properly. Our daughter had lingering gluten symptoms for about 8 months after we started her gluten-free diet.

I hope this helps. I feel your pain . . . been there. . . . still am from time to time.

Good luck and never give up being your child's best advocate,

Marcie

Hello,

My son is 3 1/2 years old and was diagnosed (via blood test) with Celiac about 5 months ago. I was diagnosed with Celiac in 2004 as well. My son weighs only 26 pounds (he still wears size 2T clothes) and he hasn't really gained anything or grown since April of this year. He had his bloood work redone and the numbers have greatly improved so we know the gluten free diet is working; however, we can't figure out why he has no appetite and is not growing. We currently go to the Celiac clinic at CHOP and they have told us that we can keep chasing our tail or we can get an Endoscopy/Colonoscopy to rule out any other problems that might be occurring. My son did have constipation issues, but we now give him Miralax everyday which seems to help regulate him. Prior to the mirilax (even on the gluten-free diet) he would cry in pain when trying to go to the bathroom and when it finally came out it was enormous.

Anyway, I guess my question is, does anyone else have a similar experience? Being strictly on the gluten-free diet (we only have gluten-free food in our house) and still having weight gain and growth issues? If so, what else could possibly be the problem? I have severe anxiety over getting the endoscopy and colonoscopy done on him. The prep alone seems so unfair for a child. How do I know he is not just a regular 3 year old who doesn't like to eat and he will just grow at a slower pace than his peers? It is so frustrating because I feel like it is trial and error and I rely on these doctors because I don't know where else to turn. How do I know he doesn't need growth hormones?

Sorry to ramble on, but any advice would be greatly appreciated! I am so upset over this whole thing and really just want my little boy to be happy and healthy!

[scarlett77]

Hello,

My son is 3 1/2 years old and was diagnosed (via blood test) with Celiac about 5 months ago. I was diagnosed with Celiac in 2004 as well. My son weighs only 26 pounds (he still wears size 2T clothes) and he hasn't really gained anything or grown since April of this year. He had his bloood work redone and the numbers have greatly improved so we know the gluten free diet is working; however, we can't figure out why he has no appetite and is not growing. We currently go to the Celiac clinic at CHOP and they have told us that we can keep chasing our tail or we can get an Endoscopy/Colonoscopy to rule out any other problems that might be occurring. My son did have constipation issues, but we now give him Miralax everyday which seems to help regulate him. Prior to the mirilax (even on the gluten-free diet) he would cry in pain when trying to go to the bathroom and when it finally came out it was enormous.

Anyway, I guess my question is, does anyone else have a similar experience? Being strictly on the gluten-free diet (we only have gluten-free food in our house) and still having weight gain and growth issues? If so, what else could possibly be the problem? I have severe anxiety over getting the endoscopy and colonoscopy done on him. The prep alone seems so unfair for a child. How do I know he is not just a regular 3 year old who doesn't like to eat and he will just grow at a slower pace than his peers? It is so frustrating because I feel like it is trial and error and I rely on these doctors because I don't know where else to turn. How do I know he doesn't need growth hormones?

Sorry to ramble on, but any advice would be greatly appreciated! I am so upset over this whole thing and really just want my little boy to be happy and healthy!

Another thought is has his thyroid been checked? My son is hypothyroid as well which symptoms were constipation and growth issues.

[dilettantesteph]

Some celiacs are more sensitive to trace gluten than others and can't tolerate processed gluten free foods. My 13 year old son and I only eat naturally gluten free whole foods for this reason. You could try that for awhile and see if things improve.

[shaleen]

Hi! I do in fact have the same issues you have!! My 20 month old son stopped growing at 10 months. He's weighed 18 pounds for the last 10 months...hasn't gained an ounce. He sees a naturopathic doctor and a nutritionist (we already saw a gastroenterologist). Their rendition of what's happening is this: That because he has celiac disease his stomach lining has been greatly damaged and until we can build up the stomach lining he will not gain weight. I have other issues too though...because his stomach lining is so thin he has allergic reactions to dairy, corn, tomatoes and citrus...as well as having celiac disease. So he has to stay away from those foods as well. I'm STILL waiting for him to gain weight! He's in 6-9 months clothing and he's over a year and a half! 9 month pants almost fall off of him!! So, hang tight, I'm right there with you. And think of it this way too....he probably isn't eating foods that put weight on him. Mine is heavy into chicken, fish, veges and fruits (he eats more veges and fruits in one day than my 3 year old eats in 2 weeks!!). So those foods aren't very fattening!! Just my food for thought:) Oh, plus when children have one autoimmune disease they are likely to have another...mine has another having to do with tuburculosis...he doesn't have it but because my great grandmother had it, he has some kind of stressor for it in his system...that is depleting his enzymes. He's on enzyme therapy as well. Lovely isn't it?

Hello,

My son is 3 1/2 years old and was diagnosed (via blood test) with Celiac about 5 months ago. I was diagnosed with Celiac in 2004 as well. My son weighs only 26 pounds (he still wears size 2T clothes) and he hasn't really gained anything or grown since April of this year. He had his bloood work redone and the numbers have greatly improved so we know the gluten free diet is working; however, we can't figure out why he has no appetite and is not growing. We currently go to the Celiac clinic at CHOP and they have told us that we can keep chasing our tail or we can get an Endoscopy/Colonoscopy to rule out any other problems that might be occurring. My son did have constipation issues, but we now give him Miralax everyday which seems to help regulate him. Prior to the mirilax (even on the gluten-free diet) he would cry in pain when trying to go to the bathroom and when it finally came out it was enormous.

Anyway, I guess my question is, does anyone else have a similar experience? Being strictly on the gluten-free diet (we only have gluten-free food in our house) and still having weight gain and growth issues? If so, what else could possibly be the problem? I have severe anxiety over getting the endoscopy and colonoscopy done on him. The prep alone seems so unfair for a child. How do I know he is not just a regular 3 year old who doesn't like to eat and he will just grow at a slower pace than his peers? It is so frustrating because I feel like it is trial and error and I rely on these doctors because I don't know where else to turn. How do I know he doesn't need growth hormones?

Sorry to ramble on, but any advice would be greatly appreciated! I am so upset over this whole thing and really just want my little boy to be happy and healthy!

[Pattymom]

Sounds a lot like my DD, now 6. She weighs 33 lbs and wears a 4T. She has been totally gluten free since 3.5 year, yet still doesn't gain or grow very much. Seh has been evaluated by an endocrinologist as well, who thinks it's a GI issue. We did have the colonoscopy/enod, even after a year off gluten. My brother has Crohns disease, and I wanted to rule out other things. The test wasn't actually very traumatic, nor was the prep. She took miralx all day, and lots of juice, jello and water ice-which was a great treat for her. her older brothers and sister were suitably impressed when "poop shot out of her bottom" which made it a great game. The actual event was fine. We went to Hershey Med, but she was in my arms until she was asleep, and in my arms again before she woke up. They wheeled us into the room on the gurney together. had a little chocolate in the mask, so she could smell it--first let her give it to her suffed animal. It was traumatic for me, but not really her. the bad news was they found nothing at all, so it's good news in that there was nothing else bad going on, but still no explanation for her slow gain. She is following her own curve on the growth chart now, after a year or more of not gaining and growing, but it is under all the regular curves. Since her growth velocity is normal, it's not be thought of as a medical problem. I still feel torn about embracing her smallness and looking for a reasonable cause.

She is also off dairy, which gives her awful eczema. We have tried various other things: zinc, enzymes, probiotics. Nothing really changed her growth rate much.

I don't regret the scope, it was good to rule out the scary stuff.

Patty