I Don't Have Celiac

[redheadheather]

Well - my test result is in. I'm NEGATIVE. When I told DH (over the phone-I'm out of town this week) he said I sounded disappointed. I didn't even really realize it myself at first... but in a way... I am. I should be happy, but w/DS's dx I really assumed I did have it (as my mother and grandmother do/did) and thought this would be something we would both work through together (I know we still can and will - but not in the same way now). Does that make sense? Instead, now it's something else that's affecting him and no one else in our immediate family. He has asked before "why me"... [his brother is the "picture" of health] (DH hasn't been tested yet). I know you've all been through this in some way or another. I guess I'm just going through the typical initial stages of dx response (anger, sadness, etc) and need to express my feelings.

On another note, as I said, I'm out of town this week. After I got my results and called DH (crying) at 11:00pm. HE went and took pictures of my sons sleeping and emailed them to me to find this morning before my seminar! He's such a sweetie-really made me grin like an idiot!

[Jnkmnky]

My son's the only one with it in our family of 5. He thinks he's special because he has it and we don't. We've done the Celiac Walks run by R.O.C.K. for the past 4 years and make a big deal about it. He has lots of awareness shirts and loves wearing them. He tells people he can't eat gluten.... He thinks he's hot stuff. He has his own pantry. He brings his own snack box to school full of special treats for special occassions. Everyday's a party in his mind. Your son will learn to deal with celiac disease from you guys. I'm sorry to hear he's already asking "why me?". My son is more of a "HA-HA, I have this and you don't" kind of celiac disease'er. Try to find the aspects of managing this disease that are fun. Our WholeFoods has mini, kid-sized shopping carts. My son LOVES to go shopping for his own foods. It's better than going to DisneyLand. Maybe you order stuff on line?? Make it as exciting as opening gifts when the box of food arrives? Have it addressed to HIM rather than you??? I hope it gets better.

[redheadheather]

Our WholeFoods has mini, kid-sized shopping carts. My son LOVES to go shopping for his own foods.

That's a really cool idea! THanks- I bet he'd really like that. And - it'd make him more "in charge" of the celiac disease. Thanks!

[Jnkmnky]

Heather, if you've got the time and energy, you could always contact R.O.C.K and begin a chapter in your area.

[skbird]

Hi Heather - I know what you mean about feeling disappointed - it is hard to accept when you think you've figured something out and then that's not what the problem is.

What tests did you have? Do you feel better avoiding gluten? Is it possible you didn't have all the tests? Not saying I'm wishing it on you! Just that I know I wouldn't test positive for it at this point and don't think I'm Celiac but do believe that I am gluten intolerant - that's still a possibility for you. My doc said dietary improvement is diagnosis enough.

Stephanie

[KaitiUSA]

What tests were done? Have you had symptoms? Were you gluten free during testing? Have you tried being gluten free and feel better?

Don't rule a gluten problem out until all the questions are answered and you are sure.

[redheadheather]

I'm sorry to hear he's already asking "why me?". 

<{POST_SNAPBACK}>

I should have clarified that statement... that was made when his allergies were acting up (very itchy eyes/stuffy nose) and his skin rash was TERRIBLE (doc at the time said excema... now I'm thinking maybe DH?)

I'll check into R.O.C.K. I am going to a celiac disease group meeting w/my mother later this month also.

[Guest taweavmo3]

Have you had any symptoms? I'm just asking b/c I have decided to go gluten free with my daughter, and I haven't had any tests done at all. I didn't have what I would call any classic symptoms, except for short stature (4'11") weight loss and anemia. After a few weeks gluten free, I've gained 5 pounds, and I feel and look healthier than I have in years (like 20 years, honestly). I won't go back to eating gluten for anything, I feel great. Tests be damned, I'm gluten free and loving it. Just kidding.....I know the tests have alot of benefits, I'm just spending so much $$$ on my kids right now, I didn't want to fork over more for tests on me, when a dietary challenge can tell me what I need to know.

It might be worth a try.....just to see if you feel better. The biggest improvement for me has been my moods. I've always been really short tempered, but today....the most hellish day I've had in a long time with my kids, I actually kept my cool. My son was actually throwing crayons at my head while I was on the phone, and I didn't yell. This was a milestone moment for me! Lol. Before, I would have totally lost it.

Hang in there! Even if you don't have it, I'm sure your son will adapt to his new lifestyle sooner than you think. My 6 year old has come to be a bit envious of his celiac sister. I try to make gluten free just a way of life, I don't give her a pity party or say I'm sorry. I also correct any family member who says "awwwww" when Emmie can't have something. I don't want anyone feeling sorry for her, b/c I don't want those feelings to transfer onto Emmie. I don't want her feeling sorry for herself, but rather take control of the diet and realize that there are actually more things she CAN have, than those things that she can't, and to be grateful.

Good luck, you will find loads of help on this board! I couldn't have made it those first few months w/out it.

[celiac3270]

Just try to keep a very positive outlook about celiac when you're around him. Jnkmnky is already doing that... try not to look at it as a bad thing around him, but twist it positively. If he feels that he's special for having it and gets boxes of food in the mail, gets to shop for his own food, and has his own pantry/space for only his stuff, he'll feel happier and in turn, the whole family will feel happier.

[Guest Lucy]

That's all fine and dandy when their little, but there WILL be a time when all our kids hate this disease.

My friends son is entering his teenage years with this disease, and he has been wonderful up till now. It is peer pressure. He wants to be like everyone else. He is JUST NOW asking "why me?" They are wonderful parents, and he is a great kid. Handled everything like a champ so far.

Just a warning, that it won't always be fun. Not trying to be a downer, but this disease isn't always fun. It isn't always "special" sometimes it's okay to give your kids a little pity.

I know that when my son cries when I stick his insulin needle in his leg, I tell him I"m sorry. Because I am. It isn't fair. But it IS the way it is. I also tell him that, and I tell him if I could, I would fix it, but I can't. I hug him and he gets over it.

We have to find a balance.

Everyone has to handle it in their own way. Let your sons personality be your guide.

[SandraNinTO]

I tested negative on the blood test too. But the doctor who suggested the test (the head of a department specializing in allergy at a medical research hospital) didn't think it would matter if I'd been off gluten for 10 years. I now know that all my blood test indicated was that I hadn't ingested gluten. Unfortunately I can't get the biopsy now 'cause I'm gluten-free. My doctor says he's already convinced because I have 7 other family members with it (they all live abroad). But it would really help my mental health to have the biopsy. THen it would be easier to believe I have celiac disease when faced with something I really want to (but shouldn't) eat. The short story is that you need to get all tests taken while you're still eating gluten. Otherwise you will always have doubt.

[Guest nini]

I didn't have the biopsy, my bloodwork was def. positive though... but even without the biopsy the improvement in my health has been so incredibly dramatic that I have NO DOUBTS that I will have to avoid gluten forever. My daughter's blood work was inconclusive, and no biopsy, but again, extremely positive dietary response and terrible symptoms when we are accidentally glutened. I say regardless of what any tests say, listen to your body. If your body responds well to a gluten free diet then by all means stay away from it. You do NOT have to have celiac to be gluten intolerant, but whether you are celiac or gluten intolerant, you still should avoid gluten completely forever, end of story!

[fisharefriendsnotfood]

  I'm sorry to hear he's already asking "why me?".  My son is more of a "HA-HA, I have this and you don't" kind of celiac disease'er. 

<{POST_SNAPBACK}>

I used to be like that when I was little! I was like, hahaha, I'm special and you're not! I eat special food and you eat normal food!

Wow. lol.

I'm not "why-me?" now or anything, just not "I'm so special" type of thing.

-Jackie