I Kinda Feel Like Crying

[redheadheather]

Just got a call from the Dr.'s office. Evan (DS-6) IS gluten intolerant per his blood test. I kinda guessed, what with the family history. But still........... I'm now making an appointment w/a dietician/nutritionist........

:::sigh:::

Well- looking for a silver lining... once he goes on the diet... maybe that will mean his other "issues" will clear up.

:::sigh:::

Looks like I'll be joining you guys permanently. Now I'm off to see if MY doctor will NOW agree to test me!!

Heather.

Some questions I just thought of.... has anyone dealt with schools about their child's diet? Evan goes to a pretty small school (12 kids in his class) - how much do they need to know? How should I go about telling them?

DH already made the comment that maybe Evan doesn't need to follow the diet strictly... I'm making him come to the nutritionist's appointment w/me. I told him how VERY important it is for Evan to be strict w/it as any "cheating" will still do more damage to his intestines, etc.

Well - thanks for you guys' support - it means alot right now.

[Carriefaith]

I'm sorry to hear about that The good news is that you now know what is wrong and you can fix it with diet and without taking medications. And we are always here to help

[KaitiUSA]

Be careful of dietitians/nutritionists because alot of them know less then doctors when it comes to celiac The best thing you can do is research it yourself so you have the knowledge.

At least you know what is wrong so you can fix it. Your husband should read up on celiac a bit too so he realizes that your son has to strictly follow this diet or serious things can happen.

[rgeelan]

I wrote up a little letter for my son's preschool and explained briefly what celiac disease is, what it can do to him, etc. I put a list of example foods he can have and can't have. Basically I send his lunch every day he goes and if they eat something *mon is movie theater day they have popcorn and soda, wed is ice cream day durring the summer* they always call and ask if it's ok and if I need to swing by and read ingredience I can. They were really understanding and are very good about watching he doesn't get food from the other kids and if they do anything like play with playdough they make sure he has his hands really clean immediatly after so he can't get sick from it. Sending your kid out of the house always carries some risk, but I have found if I explain his situation to people they are generally very understanding and helpful

[Guest nini]

I found some printable letters on the Celiac Sprue Association Website

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[Guest nini]

I also pack her lunch everyday and send snack to have on hand. Her class has a snack calendar and each child will have an assigned day for bringing in the snack. I gave a letter to her teacher which she attached to the snack calendar to send home to all the parents that explained briefly about Gluten Intolerance and that IF THEY WANT TO send a safe snack for everyone that she could also have I gave them a small list of suggestions. BUT I also stated they don't have to feel like they have to do that, because she has a box of safe snacks that the teacher keeps by her desk.

[chasesparents]

You have to read the book "Celiac Disease and kids" by Danna Korn. I was SO upset after finding out that my son has celiac and that book made me feel SO much better. She really gives some great ideas for dealing with school issues, parties, etc. It's a must read.

[lbsteenwyk]

As a registered dietitian (RD), I can attest that many dietitians are not up to date on celiac disease. Before you go to your appointment, I suggest calling her and asking how much experience she has had counseling patients, how often she sees celiacs, etc. Ask if she can give you information on label reading, hidden sources of gluten. If she doesn't seem to have much knowlege, pass on the appointment and find an RD who specializes in celiac disease. I'm pasting below a recent post of mine on how to find an RD:

If you are looking for an RD, I would be sure to see someone who has expertise in this area. Some dietitians are members of Dietetic Practice Groups. There is a sub-specialty of the Medical Nutrition Practice Group called Dietitians in Gluten Intolerance Disease. The American Dietetic Association has a referral service for locating RDs.

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You can type in your zip code and search for RDs by specialty. You can select both Digestive Disorders and Gastrointestinal Diseases/Disorders to find someone who will be most likely to have specialized knowlege in celiac disease. Most of the RDs who participate in this referral service are in private practice, so you may find that they will take extra time to find resources for you, etc than if you just make an appointment with the local hospital dietitian. Most hospital RDs tend to be generalists, unless they work for very large teaching hospitals where they may work in one specialty area.

Also, here is a pamplet from the Gluten Intolerance Group of North American (GIG) designed to explain celiac disease to teachers. I've given this to my daughter's teachers and the director of her preschool.

Open Original Shared Link

Good Luck!