Should I Be Worried?

[mart]

Hi everyone. I thank God for you guys. My doctor will only answer questions if we schedule a $160 visit with him, and even then his answers are vague he makes me feel stupid. The dietician got a good lesson on celiac disease from me. What an incredible waste of time! If it weren't for you guys, I wouldn't have known how to even begin the gluten-free diet for my 7 year old son.

I'm worried sick. He started the gluten-free diet about 1 1/2 months ago. He's eating a lot more (maybe twice as much) but hasn't really gained anything. Today the scale said he lost 3 pounds. How could that be? Although, my husband just measured him and he's grown 1/2 an inch since July. He only weighs 45 pounds.

Should I schedule an emergency visit with his GI? I'm getting really scared.

Thanks for your thoughts.

[Guest nini]

How are his other symptoms? Are you sure that he is 100% gluten free? There are a lot of hidden glutens in things and always the danger of cross contamination, OR there is something else like dairy or corn or soy that is also causing problems.

You might want to give the GI a call if there hasn't been any improvement in his overall condition. If he has shown some improvement, yet the weight loss is the only concern I would maybe speak with his pediatrician... I don't know... It's always scary when your kid is ill and not improving.

I wish you luck with this and am sending you cyber {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}

[Jnkmnky]

What are you feeding him?

Is it possible there's gluten in something you think is safe? Is he possible tempted at school during lunch to eat some of his friend's lunches? Is his teacher aware? Schools these days are the worst at handing out treats. Even my son's speech teacher uses food rewards. What is your son's attitude towards this diet? If he's terrible unhappy about it, he may be sneaking his old gluten foods.

[mart]

How are his other symptoms? Are you sure that he is 100% gluten free? There are a lot of hidden glutens in things and always the danger of cross contamination, OR there is something else like dairy or corn or soy that is also causing problems.

You might want to give the GI a call if there hasn't been any improvement in his overall condition.  If he has shown some improvement, yet the weight loss is the only concern I would maybe speak with his pediatrician... I don't know... It's always scary when your kid is ill and not improving.

I wish you luck with this and am sending you cyber {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}

<{POST_SNAPBACK}>

Hi, this is Mart's other 1/2. While the child has lost a couple of pounds according to the bath room scale, he has been very active and has not been complaining of other symptoms, e.g. stomach pain, problematic bowel movements. I suppose there is a possibility of cross contamination, but we are moving over to a gluten-free diet for the whole family to reduce this risk. His diet is completely gluten-free. The weight loss mentioned followed a weigth gain. There is a net loss of about 1 pound since he has gone gluten-free over the space of about 6 weeks. What do you think?

[mart]

What are you feeding him? 

Is it possible there's gluten in something you think is safe?  Is he possible tempted at school during lunch to eat some of his friend's lunches?  Is his teacher aware?  Schools these days are the worst at handing out treats.  Even my son's speech teacher uses food rewards.  What is your son's attitude towards this diet?  If he's terrible unhappy about it, he may be sneaking his old gluten foods.

<{POST_SNAPBACK}>

The teachers know he is celiac and have been given special treats for him. He has gluten-free crayons, etc. We bring him his lunch daily, hot, fresh and gluten-free.He seems quite content to eat gluten-free foods and is very meticulous about being conscious

[Jnkmnky]

Open Original Shared Link

Open Original Shared Link

Sounds less scary when you put it that way, dad.

Here are two links to sites that have great products. We enjoy almost all of Kinnikinnick's foods. (the cinnamon raisin bagels were not so good) The prices may seem a little steep, but the donuts are very dense and cake-like. The pizza crusts are great. The white tapioca bread is fantastic- toast lightly, packs well for school lunches. Shipping for K is very reasonable. Only $10 per order of up to $200. We have a freezer in the garage for all the extras. My kids *even the 10 year old* have half sandwiches for lunch. Fruit, cheese stick, yogurt, nuts, etc...round out the lunch. Keeps the cost of bread down this way.

The Chebe is very versatile. We make "Hot Pockets" with the Chebe. I prefer the garlic onion flavor to the red bag of Original. Everyone's got different taste buds, but the product is worth having in your gluten free life.

Have you found Tinkyada pastas? They're the best. We just got shells to make stuffed shells! I'm so excited for my celiac kid. These will be his first stuffed shells.

[ryebaby0]

I think you want to look at any child's weight loss as a percentage of their "normal" weight -- i.e., if your child is typically at the 50th, at 40 pounds, and then loses 4 pounds that might not seem like much until you think of it as 10% of their weight. Fluctuations of a pound or so are normal for most kids and I would only worry about a downward trend. You might want to ease your mind and just weigh him once a week (same time of day) for 6 weeks or so, to see if there is a pattern. If you do have a pattern I would definitely go back to the doctor. (Who works for YOU -- ignore any bad behavior and get the answers you need. Adults are much too deferential to doctors, and too worried about seeming dumb!)

Once your son heals completely, you are likely to see a more rapid weight gain. Children seem to vary widely as far as how long it takes for that to happen, but 6 weeks without much of a gain is probably okay if he seems fine otherwise. Make sure he takes a multi, too, that's really important .

[Jnkmnky]

The teachers know he is celiac and have been given special treats for him. He has gluten-free crayons, etc.  We bring him his lunch daily, hot, fresh and gluten-free.He seems quite content to eat gluten-free foods and is very meticulous about being conscious

<{POST_SNAPBACK}>

Gluten free crayons?! That's a new one on me. I didn't know crayons had gluten. In pre-school my son's class used homemade playdough. Gluten full, of course. I was worried, but they were very careful about making him wash his hands well. He never got glutened that year. My kid sure can wash his hands, though.

[junieb]

Gluten-free crayons????? Yow! What ingredient in crayons adds the gluten? Is it ok for them to use the regular crayons and then wash before eating, or right after coloring? Are there any other school-type products that could be dangerous? I don't have an answer to the weight question, sorry.

[mart]

Nini - thanks for the hugs.

His diet has been completely gluten-free for 6 weeks, as far as I know. We check every label. There may have been one accident. A few weeks ago, my husband and daughter made pancakes and my dd put the wrong syrup on them. We use an organic one for my son and she poured Log Cabin on them. The ingredients said "caramel color." I tried to reach them, but there was no phone number available. Otherwise, he is extremely responsible about his diet, at school and everywhere. Poor kid, I'm certain I've freaked him out about gluten. He's almost afraid to touch anything for fear of it being poisonous.

His symptoms are better. His only complaints are stomachache, although rare now compared to daily before the gluten-free diet. My husband thinks my son is very active and that surely the problem. It's true he runs around (everyone thinks he's kind of hyper) but we took him out of PE at school weeks ago because they're running a mile daily (in second grade!). He's so skinny. To me he looks like skin and bones. He is much smaller than all the kids in his class.

[mart]

Gluten-free crayons?????  Yow!  What ingredient in crayons adds the gluten?  Is it ok for them to use the regular crayons and then wash before eating, or right after coloring?  Are there any other school-type products that could be dangerous?  I don't have an answer to the weight question, sorry.

<{POST_SNAPBACK}>

Crayola crayons are gluten-free. Roseart are not gluten-free Elmers glue is gluten-free. Crayola markers are gluten-free.

[Merika]

I'd be worried about my kid dropping weight too. On the other hand, I dropped weight after going gluten-free and it was a good 18 mos before any of it came back. Mind you, I'm 33, not 7. I imagine a 7 year old gets better much faster. i also found additional foods I was allergic to and eliminating those has helped.

Merika

[taweavmo3]

Ack! I didn't know Roseart crayons weren't gluten free! That's all we have, and we have a whole box of Roseart markers. Here I was two days ago, tossing out every last bit of gluten in our house after Emmie's reaction freaked me out so much. Lol, but she's been coloring away with gluten. Oh well, live and learn I guess.

I'm sorry your little boy is losing weight......I wouldn't panic just yet, but I would follow it closely. Double check everything, I know that I made quite a few mistakes in the beginning (still do obviously!). There is such a great learning curve with this diet. If everything checks out okay, then I would give it a little more time. My daughter gained some weight at first, but it took a good 3 months before she really looked healthy again. Oh, and I had to giggle at your other 1/2 posting too! My husband and I are usually on different pages when it comes to the health status of the kids. I'm always worrying over every little thing, thinking of ear infections, strep throat, gluten accident, etc. Dh's answer for everything is "it's just teething, give 'em some Motrin". Ugh. Not saying your husband is like that at all, but it just made me laugh.

Good luck, and keep us posted!

[mart]

Yes, my dh posts too. He's very involved with my son's diet. I think he has celiac too, although he's a little overweight. He has all the other classic symptoms. We hope to test him, although he's afraid of what a positive test result may do to our ability to get insured with a different carrier in the future. He's trying to eat gluten-free, but I think he's careless when he eats out. He doesn't ask about ingredients, just orders what he thinks looks gluten-free.

As for my son, I will call the doctor today. It will take me a while to get a referral from the primary to the gastro and then actually get an appointment to see the gastro. My son is so skinny, but he looks like he's feeling great. His bowel movements even starting changing color to a "normal-looking" dark brown about 3 days ago. They used to be gray, and then yellow when we started the diet. He still only complains of fatigue. If he wasn't losing weight, I wouldn't be worrying. He's eating like a horse most days. We're very careful, as is he, about eating gluten-free. He doesn't touch anything without asking if it's gluten-free.

I feel very alone many days. For the most part, I don't think his doctor really gave us any information about celiac disease except for the diagnosis. I must say, though, that it was he who referred me to this website, and for that I am grateful. I almost feel like an expert after reading all the posts on this site within the last 2 months. I'm disgusted with the dietician I saw last week. I had been warned, but still I went. You know what she told me? She said my son would eventually be able to tolerate gluten again! When I disputed that, she just looked at me and laughed as if I didn't know what I was talking about. Then she said it wasn't necessary to sterilize pots and pans, as a few gluten crumbs can't possibly do any harm. When I disputed that too, she just looked at me for the longest time with a look of pity. She told me I was going to ruin my son's life if I was so paranoid about him being gultened.

Worry, frustration, etc. etc. Think I'll go have some chocolate (gluten-free, ofcourse).