Son Just Diagnosed With Celiac Disease

[Mommy2Many]

After many years we finaly have a diagnosis. On January 8, 2009 my 12 year old son's blood work came back that he had the DQ8 gene. Then on March 17th, 2009 he had his biopsy which confirmed the diagnosis of Celiac Disease. It was also found that he had inflamation of the stomach lining and an ulcer on his esophagus. So now he is starting his life long Gluten free diet and 6 months of medication for the ulcer and inflamation. I have a few questions... I read that there are some skin products that have wheat in them. Will that go through the skin and affect him? Is there a certain type of lotion or shampoo that he needs to use? Also, I was told by the doctor that I had to inform all of the pharmacys that we go to that he had this because some medications have things in them that can hurt him. Would anyone suggest that I get him an ID braclet that says Celiac Disease on it? My son is not to happy with this and as he is almost a teenager he is telling me that he is still going to eat what he wants. Why he wants to continue to have these horriable cramps and symptoms is beyond me! I have already let the staff at his school know as well as his school councelor that he can no longer buy lunch and that I will bring him his lunch every day. I need some advice on how to tell him how important it is that he sticks to this diet. I read on one web site that someone's mother died at 45 from stomach cancer due to Celiac Disease that was not maintained with a proper diet. I don't want to tell him this and scare him but on the other hand I feel I need to make sure he understands the reality of this if he does not follow the diet. Any advice, answers or suggestions would be greatly appreciated!!! Thank you in advance.

[nikkicn]

Once you have a diagnosis of celiac, it can be like a weight lifted, because now you know what to do to get better. He will be amazed at how much better he feels if he stays gluten free for awhile. I know it's hard being dx'd at 12. My son is only 3 when he found out, and then I just had positive results and I'm 35. There is the risk of other autoimmune problems showing up if he does not stay on the diet, so I think you should tell him that. Maybe you can set a time for him to try the gluten-free diet - say 6 months- or 3 months to see how much better he feels. I bet that once he finds out how it feels to be healed, he won't want to go back. So many times I have almost forgotten I can't have gluten, but that's one thing that keeps me straight--I would like to avoid stomach cancer and osteoporosis and diabetes if possible.

(I'm holding out hope they will come up with a gluten blocker in my lifetime

A really good website that helped us was Open Original Shared Link. She has lots of good suggestions for lunch and good replacements for pizza and bread. Our favorites right now:

Gluten Free Pantry chocolate truffle brownies

Chebe cheese bread

Pamela's Amazing Wheat free Bread Mix

For skin products: we haven't had problems with cosmetics, and I read that it is not absorbed through the skin. Others may have more to say on that.

For medications: I check when it's possible, but an article I just ready in Gluten Free Living magazine says that most medicines are gluten free. Check out gluten-free Living mag--I do have our pharmacist check, though. Most are fine with calling the manufacturer for you. I do try to find gluten-free vitamins as well.

[missy'smom]

Involve him in the process. Get him in the kitchen with you. Let him be involved in decisions(offer safe options) so that he takes some responsibility and feels some control. There are many "normal" kid favorites that are gluten-free-Lay's Staxx, many candies. You can click on the link on my profile to see what we do for school lunches. He may/may not go for the same foods that we use but you can take away the concept. My son's going to be in middle school next year so I'll have to restrain myself from the cute factor. Lunchinabox.net is a good resource for packed lunches. They're not all gluten-free but there is a wealth of ideas and resources there. I don't know how it is in middle school, but Ds(10) keeps a treat box in the classroom with individually packaged treats in case of a party or other treats that are provided to the class that he can't have. When it gets empty, he brings it home and I fill it up again.

The pharmacy I use doesn't understand what gluten is and thinks that you can find it on the labels. You can't, so I call the manufacturer myself. They let me use the phone there at least. I ask the doctor for the generic and brand name before I leave the office so that I can do my homework and ask the pharmacy to switch if I can't confirm that one or the other is gluten-free.

[Takala]

Oh, heck, don't sugarcoat it or he won't get it. Tell him it will ruin his social and dating life as he gets older, it gets worse, and he has to spend most of his time in the bathroom.

I would go ahead and switch the soaps and shampoos because the residue is impossible to rinse off if you have hard water. Ivory bar soap is okay and Dove shampoos are okay. I use some sort of cucumber body wash of another brand instead of shampoo, which I don't know is technically wheat free, the label looks okay, nothing "triticale," nothing "oats", except that I can say I do not react to it and I trust my physical reactions ( my skin is much more sensitive than the rest of me) over anything else. Ever since I learned that this **** can be in shampoos and learned to look for it, my skin has been much, much happier.

Pure coconut oil is a nice safe moisturizer. Pure apple cider vinegar mixed with water is a better hair conditioner than most commercial products.

Don't get him a bracelet because the last thing he wants to do is be labeled as being different at that age when they want to conform to what the other kids are doing.

One of the symptoms of eating gluten when you shouldn't be is that you get more stubborn and temperamental. From my reading here it seems like some guys are more prone to this sort of "I'm gonna keep on eating it and you can't make me stop nanna nanna nanna" routine, esp. when they find out they're supposed to switch to gluten free beer and pizza.

If he has favorite foods go ahead and splurge on the substitutes for them so he doesn't feel deprived. Another mother was saying on another thread how does she tell the kid he can't have spaghetti and pizza anymore, this is nonsense, you just eat gluten free spaghetti and pizza and mac and cheese, and it doesn't make you sick. You can haul him to a Whole Foods or another health food store and have him help select which gluten-free goodies he would like to try. Warning. Sometimes in health food stores some ding bat will try to sell you something with spelt, which is a low protein wheat, so tell them NO if they attempt that. You need to avoid all foods with wheat, rye, barley, spelt, and in the beginning, oats. You may be able to have him eating certified gluten free oats later. You may also need to avoid soy or go soy- lite, and dairy lactose (so you would be using yogurt and hard cheeses) if that does not completely resolve the symptoms.

For baking if you find that intimidating at first, just grab a bag of Pamela's gluten-free all purpose blend and follow the recipes on the label.

You will need to get a new toaster, cutting board, and colander, throw out the old wooden spoons, and maybe some new bakeware and tupperware for your gluten free cooking. A magic marker is good to write "gluten-free ONLY" on these items. If the whole household is not going gluten-free, you will need duplicates of things like peanut butter and jelly and keep other knives and spoons out of them. If everybody goes to mostly gluten-free baked and cooked goods it will help him stick to the diet easier if the stuff is readily available in the house, and you're all eating the same thing so he doesn't feel deprived.

[sugarsue]

Super Duper Big Cyber Hugs to you and your son!

My daughters are younger so I'm sure that makes it easier since I still control much of what they do. But if you can control his food for a good amount of time to get the gluten out of his system, after an "accidental" glutening, he may change his attitude about it. I agree with the other posters that he may end up feeling so good that it will be easier for him to accept. The more education he can get the better. I'm sure it could take him a while to really get it but I think he will with time.

We find the Glutino 4 Cheese pizza a wonderful pizza alternative and there are some really good mac & cheese alternatives too. Unfortulately my girls have trouble with dairy so this complicates things some. So many really good brownie mixes, etc. will really help him see that he will not be deprived.

You are at the right place to get advice and help as you both learn the ropes!

HUGS!

[Amyleigh0007]

I agree with Takala. I wouldn't sugarcoat the facts but I wouldn't scare him to death either. A 12-year-old can handle the truth. Tell him that if he doesn't take care of himself now that he will have major health problems later on. He might take the diet seriously if he realizes that he could have problems such as gas and diarrhea while out on a date (embarrassing!).

[CeliacMom2008]

Welcome! The next couple of months will be tough on all of you as you adjust, but it is very worth it and very doable once you get through the learning curve. I totally agree with the post about not saying that you "can't have _________." The only thing I have found that my son (and thus our family because we pretty much all eat the same) "can't have" is licorice. We have found a substitute, but it's not really the same. But that's it! Out of all the food in the world, in over a year we've found one thing!

Your attitude will likely rub off on him. If you're positive about this, he'll have a better time with it. But you'll both need to go through the whole process - relief of a diagnosis, anger, saddness, frustration, happiness (yes, happiness). Let yourselves go through the stages, but don't stay there too long!

I'm probably the Mary Poppins and Pizza Lady here - I do tend to see the glass half full and I do tell everyone that the gluten free pizza recipe we use is way better than any pizza parlor pizza (in our very humble opinions). So welcome to the world of gluten-free eating and healthier kids! I'll leave you with a few random tidbits...

Danna Korn's book Raising Our Celiac Kids is excellent. I didn't get it until a couple months after diagnosis and I wished I'd bought it from Day 1.

Living Without Magazine is a great magazine if you're a magazine person. Their website also has a lot of free articles and recipes from the printed version.

Look to see if you can find R.O.C.K. (Raising Our Celiac Kids) group in your area for your son. It might help him to meet other kids who have mastered the gluten-free lifestyle. My son would happily tell him it's no big deal.

Gluten cannot be absorbed through the skin, but it can be ingested off your skin (think freshly lotioned hands picking up a sandwich or lip balm which is invariably going to get into your mouth). People fall on both sides of the fence - some say no gluten on anything others are more lax. It isn't that hard to find gluten-free soaps, shampoos, lotions, etc. so if you decide to go that route don't sweat it.

It helped us tremendously to keep the labels off of products and mark them as good, bad, etc. There is a very wide range of taste quality in the gluten free world. Don't feel you have to settle for something that tastes bad. You just haven't found the right brand or recipe yet! Accept that in the beginning you may end up throwing money away on items that end up being gross. It won't always be this way. And you can search just about any item here and find someone's opinion on it!

Don't be a stranger and let us know how we can help!!

[Mommy2Many]

Thank you SO much for everyone's quick responses and informative information. I never even thought of half of the things told to me here so far. Like getting a new toaster or throwing away the wooden spoons. Makes alot of sense but something that never crossed my mind. Thanks again!

[mmcdaniels]

A couple thoughts I had was how does your son feel about mom coming in every day with his lunch? My son is 9 and I send his lunch to school in his backpack. If it needs warmed up, someone does that for him. At your son's age I would ask if he would be allowed to microwave his lunch himself since cool food options are somewhat limited. At first I tried to match his lunch to what was being served in the cafeteria but I've decided that doesn't really seem to matter to him. I often send in leftovers from the night before. The other most common lunch is a pack Carl Buddig ham, an apple or banana, and either Lays Stax or a gluten-free brownie.

We aren't all gluten-free at home so I have a couple separate non-stick pans and a separate set of utensils for gluten-free cooking. I also have a few plastic containers that only gluten-free things can go in. That has really helped me avoid cross contamination. All gluten-free items are red and only get washed in a clean sink with a clean dish rag before any items contaminated with gluten.

[ang1e0251]

I no longer have a 12 year old but I remember it well. My favorite thing with my husband when we were first married was to trick him into eating foods he said he didn't like and wouldn't eat. Carrots was one. I cooked and pureed them then made a stew with them. He loved it and had to admit carrots were OK. I've done it to him so-o-o-o many times!

I would cook gluten-free meals for him but not tell him they were. Make the same meal for everyone. I think most people cannot tell the difference in Tinkyada pasta from wheat pasta. Serve it up and when it disapears and dishes are being washed say, " now eating Gluten Free wasn't so bad, was it?"

I never much like peanut butter cookies until I made the flourless recipe. Now I about live on them. Everyone in my family does.

Make him some gluten-free food that irrisistable and he'll start to get it.

[lonewolf]

My son went gluten-free when he was 11, but it wasn't too big of a change because I was already gluten-free. But I do remember that it was hard on him at first. He's 14 now and will occasionally cheat with things like candy that has crisped rice in it, but other than that he's pretty good.

I have a file called "25 easy gluten-free recipes that everyone will like". It has main dishes, desserts and a few other random things. If you PM me with your email address I would be happy to send it to you.

[purple]

I agree with Takala. I wouldn't sugarcoat the facts but I wouldn't scare him to death either. A 12-year-old can handle the truth. Tell him that if he doesn't take care of himself now that he will have major health problems later on. He might take the diet seriously if he realizes that he could have problems such as gas and diarrhea while out on a date (embarrassing!).

And possible foul breath..eeww

[swalker]

I try to keep gluten free baking in the freezer at all times. I like to have two different cookies, and two kinds of muffins. I also make big batches of pancakes and bread two loaves at a time. With quick and tasty choices available, we're less likely to want to cheat. My grandson actually prefers his cookies frozen.