Frustrated

[Trust Birth]

I hope I can post his here, sorry if it's not the right place.

My son is 5yrs old and has all the symptoms of celiac disease. His dietary response has indicated that he is much better OFF gluten, we intend to get him tested through the American firm in Texas but for the time being he is completely off it as we realize it is serious problem. It has become a consuming process and I can always tell when he has had it. His behavior is ADHD and the physical symptoms are very disturbing. Anyway, the in laws don't seem to understand this. I know they are not the ones doing the research so I try to communicate how serious celiac disease actually is and reinforce often that there can be no exceptions. They brush it off and I think they think I am looking for reasons for his ADHD behavior when I should just be putting him on a medication. It is extremely frustrating. They figure, that once and a while having diary or some other food that he is sensitive too is fine. They think he should be able to have treats now and again. Course they don't have to deal with a little boy who has extreme abdominal pain that makes him cry long and hard, a DH type rash on face and backs of arms along with a volatile disposition following his consumption of something he SHOULD NOT have had. Thankfully, my parents got it when they watched him have a reaction to gluten after my Dad accidentally gave him a food without reading the label. They were disturbed over his physical symptoms and my Dad felt horrible about it.

As well, I feel very alone in the process. Although DH is supportive he is not the one doing the research, baking and cooking. I am usually a fairly strong, confident person but this has thrown me for a loop. I have to think of everything that goes in his mouth, spend lots of time in the kitchen and I find that I am worried about him constantly. We're trying to move our kitchen over to utensils, pot/pans etc that are gluten-free but it is a time consuming and money involved task. Worth it but consuming. My In Laws look at me like I am crazy to do all that.

Anyway, I am sorry if this has been discussed somewhere else, if it has could someone give me the thread so I could read through it?

[MollyBeth]

I am going through the testing process right now too and have been doing crazy research. I've been trying to talk to my mom about it and she has not been very supportive at all. I feel your pain and frustration and think that all you can do is stick to it and maybe try to share some of your research with your in laws...maybe pass a book along to them or some highlighted print outs from web sites.

On another note with the ADHD behavior...I started taking Ritalin when I was 11 and it really did a number on me physically. I really struggled to keep my weight up. Those drugs really supress the appetite. My brother was also ADHD and started taking meds when he was much younger. The meds did help us both in school and at home but looking back I sometimes wonder if dealing with the side effects was worth the results. If you can figure out a way to control your sons behavior through his diet...I strongly recommend you try that before putting him on drugs. Drugs like ritalin, Aderal, and Concerta are class three Narcotics. That's the same class as Cocaine.

[lizard00]

I have a MIL who doesn't quite get that if it says "whole grain" and it's in a grocery store, it's a given that I can't eat it. But, so far it's just me, not my son. However, if it ever does come to my son being on a gluten-free diet, here would be the rule:

He is our child. We have decided this. I'm not asking you to like it, but if your relationship is important with your grandchild, respect it, or we won't leave him with you.

I know that sounds super harsh, to basically threaten to keep your child away, but they need to understand the serious nature of Celiac. They need to be concerned about his health, and understanding that NO, he cannot have a slice of cake here and there. In this case, the saying everything in moderation does NOT apply.

But my husband and I have already decided this. So, you need to talk to your husband, and the two of you need to have a solid agreement, and then lay down the law. Who cares whether they agree with you or not, they just have to follow the rule.

You have enough to adjust to with a lifestyle change, they don't need to add grief. And GOOD FOR YOU for looking for a reason for his ADHD rather than just medicating him. I wish more parents would look closer before deciding that is the right thing to do.

[Pattymom]

Putting your child on medications like that is not the easy way out, nor is it generally done without a lot of thought, consideration, and tears. Sometimes it is the best choice, other times it's not. I have a nephew on meds, an dI nwo tiwas a tough decision making process full of desperation. I have considered ADD meds for my 7 year old, but decided against it b/c of the appetite issues, he's barely 44 lbs and just starting to gain off dairy and gluten. His behavior is actually great, its' just the attention span. it does bother him, he has a hard time focusing at karate and thus is not advancing as fast the other kids. I wonder if I am doing him a disservice by not giving him meds to fix it, but ultimatly my decision for now is to look for alternatives. At the same time, my older son asked for meds for his anxiety. also a tough decision for me. These types of disorders are just as real as diabetes and epilepsy, yet seeking treatment and meds for them is so much harder to come to terms with. And once you decide you need to, it doesn't help if others (as has happened to me and my sister lots) suggest that you just didnt' take time to research yor optionsor didn't want to deal with the hassles. Etiehr way is challenging.