Sunday, August 16, 2009

Bad gluten

It seems that gluten is Sully's problem. I'm holding out for a couple of weeks to give that the definitive ruling but after 1 week of gluten free he is having results.

The diarrhea seems to be gone again and the tummy aches.

The rash is MUCH less red and all the spots seem to be drying out. Which in the past has been a sign that the rash leaving him. 

So there is great hope. 

But with that comes me needing to get educated on the gluten free diet. I was wondering if anyone out there who reads my blog has any tips? 

Sully really dislikes the store bought, gluten-free bread. I do not blame him. Its nasty stuff. 

So its evident I will need to make bread for him. 

Anyone know any good sites or cookbooks for gluten free diets? 

He is such a trooper. I told Jordan if this were Avery she would likely starve. But Sully is so good about it. We went to McDonald's after church today. I explained to him that he could no longer have his most favorite food in the entire world - a cheeseburger. He said, well what can I eat there? He ended up eating the grilled chicken off my salad since he also couldn't have the breading on the chicken nuggets or selects. And he loved it and didn't complain. (He also got a chocolate sundae for being so great!)

(Also, yes, Sully tested NEGATIVE for Celiac's Disease. According to his blood work - he is NOT allergic to wheat/gluten. But also since then I've talked to 2 people who are highly allergic to gluten who also test negative when blood work is done. I find that very interesting/frustrating. It also means that we will get little to no help from dr.s with this because they believe if you don't test positive for it, you don't have the allergy...I think Sully is proving that wrong!)

8 comments:

D G Curren said...

Becky-
We have a good friend who is in his twenties and has to eat a gluten-free diet. If you want, I can get in contact with his wife and mother to see what cookbooks they used and if they have any tips or favorite products. Yes, I'm guessign they make their own bread.

Grace

Shannon/Jodi said...

I noticed on my Cinnamon Chex cereal that it is gluten free. YUM!

I've got a cookbook with some gluten free recipes. Give me a couple days and I'll try to get some copied for you. If I forget--remind me!

Sarah Guild said...

The allergy guy we saw said that the good news with food allergies is that you can outgrow them :+) You have one terrific little guy to be so agreeable about things!!

Meghan said...

Kerri and Jay can help you lots with this....my mother in law probably has some suggestions too. On vacation she made a gluten free cake...it was delicious. :)

Ellie said...

One of my best friends has a 2 yr. old that has Celiacs disease and she cooks gluten-free for her. I can contact her with suggestions!

Unknown said...

Hey Becky,
Jody Landers passed your blog onto me. We've been GF and Dairy Free (soy free, and shellfish free, too)for about 8 months now. I've found a good rule of thumb is to remember what my dd CAN eat, rather than what she can't. Fruits, Veggies, beans and rice and Meat are easy to do in the beginning, and then get creative as you have the time and energy. I LOVE the www.thespunkycoconut.com site and cookbook. It is well worth the $, and the author is a sweetie. Please feel free to email me anytime! It is HARD to have a kid with food allergies. It is hard to see them suffer, and hard to watch their diet. Some days i honestly want to throw in the towel. But...I know it is SO worth it. Huge hugs,
angela
angela in co at yahoo dot com (no spaces, of course) :)

Melanie said...

Did you know that one of the ladies at the farmers market sells gluten free bread? She has a child that has that diet. Maybe youc an pick up a few loaves and get her recipe.

Courtney said...

wow, becky. that's huge. that you know what's causing it. but that he also has to limit things. i have no experience/tips. but i'll be praying for wisdom and patience for you! and a good attitude for sully!