Son Looks Like Stepped Out Of Concentration Camp - Help!

[celiackidmom]

We are fairly new here. My 12-year-old got extremely sick over the summer (lost weight, slept non-stop, stomach issues, constipation, etc.) He was diagnosed with celiac disease. We have taken him off of gluten and are pretty strict about making sure he doesn't get contaminated in any way. He'll have some good days but he's still not back to normal. He doesn't sleep all the time anymore and his mood has improved greatly, etc. The problem is he's not putting on weight and he still has bad days every so often with nausea, stomach pains, and constipation. I'm not sure what else to do... maybe dairy is a problem? Someone mentioned nightshades?? Is it just going to take longer than I think for him to feel better? He's so skinny it scares me. He looks like the little kids from a third-world country. Any ideas for how to help him heal faster and put weight on him?

Thanks!

[Skylark]

Welcome to the board.

I'm sorry your son is so sick. It must be scary. Definitely take him off dairy. I know the gluten-free/casein-free diet is hard, but some celiacs really have trouble digesting dairy until they are healed. He may be able to reintroduce dairy once he's feeling better. Also, make sure he's not eating oats. Some celiacs react to the gluten-like protein in oats. Hopefully that will do the trick.

Also make sure he's not getting into hidden gluten. It's best to feed him mostly fruits, vegetables, meats you cook yourself, rice, potatoes, beans, nuts in the shell, and other foods that are naturally totally gluten-free. Aim for foods you can pick up in the store and tell with no question they're gluten-free. For example, you know for sure there is no gluten in a banana, an apple, a carrot, a package of chicken legs, or a head of broccoli. Sort through dry beans and rice for other grains before you cook them. Processed foods can have too much residual gluten for some celiacs, even "gluten free" products. I know all the cooking is extra work, but it can really make a difference. As with the dairy, you can try feeding him Glutino, Udi's, Kinnikinick, and other good brands that have dedicated facilities once he's feeling better and at a more healthy weight.

If there is still trouble, watch for problems with corn or soy. Those seem to be common issues around here. You can look at nightshades too, but I'd say overall they're less of a problem than dairy, corn, or soy.

I hope this helps and good luck!

[starrytrekchic]

Other intolerances like dairy might make him nauseous, but they won't stop him from healing. If he's still not gaining weight, you're going to have to look at other sources of gluten. Even a few crumbs will make him sick.

Check the following: sources of cross-contamination in your kitchen--you'll need to use some separate utensils and cooking equipment--he absolutely can't share a toaster, anything wooden, a pasta strainer, or a cutting board. You'll have to make sure the kitchen area you prepare his food on stays clean--if the food drops on the counter or another surface, don't let him eat it.

Pet foods or other sources of household things that contain gluten. Even some toys (I want to say playdough?) and craft supplies can have gluten in them.

Make sure his bathroom supplies are gluten free (shampoo, soap, etc.) Make sure if he eats food at school that they're aware of how dangerous it is for him to get even crumbs.

Make sure he's not cheating on the diet anytime he's out and about.

Make sure you know all the ways gluten can hide in foods (barley under natural flavoring, malt, tocopherol acetate, etc.)

If the foods you buy don't have a 'may contain' or 'made on shared equipment with' line, you'll need to call the manufacturer and make sure there aren't any trace amounts of gluten introduced in the manufacturing process.

Make sure all of his medications, herbal supplements, vitamins, drinks, and anything else that goes in his mouth are gluten free.

Keep in mind some naturally gluten free foods may be cross-contaminated during harvesting or in factory. This is a particular problem with gluten-free replacement flours.

Keep in mind that 'gluten free' on the label doesn't mean there aren't trace amounts of gluten introduced in factory. The nationally accepted limits for gluten free may be too high for your son.

You might consider keeping a food diary for him so you can pinpoint what is making him sick. Keep in mind symptoms might not show up immediately.

[SilverSlipper]

Hello CeliacKidMom - It took around three months for my daughter to start looking healthier and begin to gain weight. Probably six months into the diet was when we started seeing significant gains (significant for her age that is - about six lbs). She's still a very small child for her age, barely on the 'chart' that pediatricians love to show you.

I do have some suggestions -

First, ask your ped or gastro what they think about his weight and overall health. My daughter is very small and I get a lot of concerned comments about her, but her ped and gastro both maintain that she is healthy, just small. Try not to borrow worry (and that's hard, I know because I do it a lot). If they aren't worried, things should be okay.

Second, consult a nutritionist and ask for suggestions on weight gain. Check with your insurance company first. Mine, sadly, won't cover it and nutritionists make more money than anyone else we see on a per hour basis. If i could go, I would go to one.

Third, there are some weight gain protein shakes (scandishake comes to mind) that taste good and pack on some calories, gluten free.

Fourth - if you want to try dairy, you should see results quickly so I would try it for a week and see what you think.

Good luck with everything.

[dilettantesteph]

I looks like you have already gotten some good suggestions. I didn't see food diary in there. Keep track of what he eats and how he feels so that you can see connections. My son was diagnosed at age 10. He was throwing up 10 times a day and got very skinny. Then he got almost fat so there is hope for your son. My son regressed a bit after almost three years and we had to keep very careful track of what he was eating for awhile to figure out why. During that time he got skinny again, but we got it sorted out and now he is just right. Not fat anymore either. There is hope. You can do it, just stick with it.

[srall]

My 7 year old is in the process of being tested right now. I love her pediatrician as he is being very supportive and has at this point marked her as "gluten intolerant" in her chart. I'm still with you as far as a kid who looks so skinny and sickly it almost breaks my heart to see her with other kids her age who are so robust and healthy. We've cut dairy, then tried it again and she broke out in an awful rash. Whenever she eats corn or corn syrup she gets hives and hyperactive. So, even though I'm still trying to figure all of this out with my daughter, I have found that other foods besides wheat and gluten are causing problems. I try and give her a couple of green drinks with B12 every day and then just let her eat as much as she wants that is safe. I'm really trying to push meats and fresh produce.

Good luck with your son. I've noticed improvement with my daughter, although I want it to be faster than it is. When I went gluten free it seems like I was feeling better within two weeks, although I admit I still have bad days. He'll get there. (BTW: She is about 6 weeks gluten free)

[celiackidmom]

Thanks to all who offered advice and encouragement!

When he originally got diagnosed, the doctor said he was malnourished but that everything should change as soon as we got him off of gluten. However, my son almost seems skinnier to me and the GI specialist that he is supposed to begin seeing is not available until February, so I wasn't sure where to go for my concerns. I was thinking about making another appointment with his doctor to get ideas on why he's still not thriving.

You all helped me with some things.... I don't know that I'm being extremely careful in the kitchen with some of the utensils, etc., although I thought I was! Also, we just let him have all kinds of foods that were labeled "gluten-free" and now am learning that it might not be "gluten-free" enough! I am going to remove dairy for sure and stick to whole natural foods and see how it goes.

Should I not make any homemade "gluten-free" breads either because the different "gluten-free" flours (Bob's Red Mill, etc.) might still be too much?? Can I use Udi's now or wait?? What do you think?

It is difficult to see my happy and active kid struggling so much. Last year he was a star soccer player, this year he can hardly walk long distances due to lack of energy and joint pain. I just can't wait for him to put on weight and start growing again and enjoy his active lifestyle. He's just watching while his older brother and younger sister do everything.

I don't mind taking the time to cook and do everything raw and natural - my trouble is finding out what to make for an already picky eater. What do you guys feed your kids for breakfast? Eggs every day? Lunch ideas?? Dinner - we've been rotating out different way to cook chicken, hamburger patties, pork chops, etc. - and of course, adding in fruits and veggies. Any ideas would be great!!

Also, can I still feed him yogurt or take that out too??

Thanks for all your help!

[kareng]

Has he been checked for vitamin deficiencies like iron, ?12, d? I think that is very important to check. Might be the cause of some of the problems as he hasn't been digesting his nutrients.

Breakfast can be anything really. If he wants a burger, great! You might try hiding calories. A good food for that is olive oil. It is a good for you fat but still full of calories. You could drizzle a little in his pasta sauce or on his burger. If you make oven fries, just add a little extra olive oil. My boys love olive oil on green beans after I boil them. Theynlike olive oil on red skin potatoes, cut into cubes and cooked on a cookie sheet in the oven. I eat the left overs with scrambled eggs. If he likes deli meat,( Hormel naturals are yummy) tho not a lot of calories, could be added to the eggs or with them. Maybe since he is sick, he is special and get bacon. does he do pb or sunflower seeds or peanuts?

I have 2 boys, 14 & 17. 12 is old enough to get him involved. If he understands what is happening, maybe he will be more willing to try or choke down new foods.

[mushroom]

Lots of people who are lactose intolerant can eat yogurt because the enzymes predigest the lactose that is the problem. You will have to try it and see.

Another thought is to get some good digestive enzymes. Oftentimes the pancreas takes a vacation when overwhelmed by gluten and does not put out enough of these goodies to allow proper digestion of the food, before it can be absorbed. Worth a try. Also some gluten-free probiotics to help heal the gut.

[pghmamacita]

My son was diagnosed in August, and after losing lots of weight he has finally put on 4 pounds. The initial weight loss began earlier in the year ( he was diagnosed with Type 1 Diabetes in April). He still wears the same pants as last year, and has never done that in his life. I understand your worry and the only thing I can say is keep trying. I have a storage bin in my kitchen for all of his cooking supplies, which were bought just for his gluten free use. I go through paper towels like crazy. I wash my hands when opening the package, after opening the package, and any time I touch anything that may be gluten contaminated. You don't realize where it can be lurking. I also have his own utensils, plates, etc. I even bought a separate freezer for his foods. Just give him foods you know are safe, try a protein shake...make sure they are gluten free first.

[Skylark]

I would skip the dairy entirely. It is most likely that he is reacting to casein, one of the proteins in milk. You could try a little Lactaid milk to test for lactose intolerance. When I first figured out my problems, I could eat goat dairy but not cow.

I'd minimize "gluten-free" bread mixes and Udi's for now if you can find enough other foods for him to eat. If he's picky you may not have much choice. You can always add them back when he gains a little weight.

I was wheat-free as a kid (sadly I was diagnosed with allergy because I was so sensitive to wheat I was off it when they did celiac testing). I usually had eggs, sausage, or ham for breakfast with home fried potatoes or cream of rice cereal, and a little fruit. We made pancakes from rice flour on the weekend. Sometimes Mom gave me rice cakes (Lundburg are best for gluten-free) with melted butter and cinnamon sugar for a treat.

[dilettantesteph]

It is hard at first because they have such a taste for chips and such that they don't want veggies and fruits. After being off the junk food for awhile my son developed an appreciation for veggies.

[celiackidmom]

Wow, thanks everyone for all your suggestions!! We are definitely getting creative around here as it just so happens that my pickiest eater of the family is the one on this special diet - go figure... Thanks for mentioning about personal involvement as well. He is very involved and understands as I've had to explain many things to him to convince him of what he needs to do for himself to get better. Due to that, he's expanded his taste buds and is open to more things.

Anyway, we will just keep at it diligently. I already use olive oil, but I will use it more. Thanks for the suggestion. Also, he does like peanut butter so I will encourage more of that as well.

Thanks for sharing your stories! I will continue to try and be patient as I keep trying to put some weight on him. I am also definitely going to make sure foods are more separated and get extra utensils, etc. that are only for cooking his food or family gluten-free meals. We will work on sticking with more natural foods instead of getting everything processed "gluten-free". I think at first, I just wanted him to be able to have cookies and bread and everything, so I went out and bought anything that said "gluten-free" for him to try. I've taken him completely off of dairy, tomatoes, potatoes, and of course most sugars. The whole family is eating a lot healthier which is great!

We'll see how he improves and then slowly add things in. I'm also going to start a food diary. Thanks for that too! It's so nice to have this forum and hear from others and get help when you're new at this. Thanks again soooooo much!