Why Can't It Just Be Treated With A Pill?

[melisano]

I really don't want to sound crass or belittle any other disease or anything--now with having my "excuse or whatever you want to say--I have no brain right now" out of the way. Just this afternoon my son got the final dx that he does indeed have c.d. The kid is only 6 years old. Pale as can be, has those awful poops everyone has been talking about (he dreads going to school b/c he might have to rush to the pot and is afraid he won't be able to get it clean enough), has lost 10% of his body weight within the last 6 weeks (he was thin to begin with). Actually there are so many things I want to say and ask. I have gone up and down the different topics and none really exactly on my mark--well, maybe I'm too impatient. When I said, why can't there just be a pill to cure it I meant that it would make it "easier???". I was always thanking God at how wonderfully healthy our son was and now this. Oh here comes the poor me syndrome.

Anyway, I guess the best place for me to start right now is--what are the best books? Any other good websites? (this one is wonderful so far) What am I to do? He has been so incredibly down and unable to play sports and continue with karate. He was so active and then about 5-6 weeks ago, he became very ill (with what? We still don't know. Lots of labs are still out on that...the I.D. doctor says that sometimes things like that just happen with young kids and you never find out exactly what it was...) so with the lowered immune system, this kicked up the c.d. to where it was really noticeable. Now that I think back, he has had some sort of symptoms for many years now. Boy, and I thought breast feeding for the first year of life would be the beat all cure all. I'm sure things could have been worse--please don't get me wrong. Maybe I should write back again in a few days when I have had time to let this sink in and read more about the disease.

I need to go put my wonderful son to bed. I look into his eyes and my heart swells up and my eyes majorly well up with tears. Like I said, I know that it could have been much worse (I have a sister with spinal bifida and yes things could be much, much worse).

Well, I do need to run. Anyone out there please help me with anything you think I might need to know or that you know I will be experiencing, facing, etc.

All my best,

Michelle

[tarnalberry]

I'm one of the camp that doesn't think "just having a pill" would be easier. Then you've got to deal with the cost and the side effects. Wheat is a fluke of man. It was first culitivated only a few thousand years ago, and has only become widespread because of manmade interventions (crossbreeding). We can live simply and healthfully completely without wheat. Yes, "a pill" could be easier in that it will let us keep eating fast food, over processed food, and other things that are far removed from their natural state, but that's only because we live in a world that created these artificial conveniences. (Hmm... I'm trying to not let my cranky mood affect my posting, but I guess I failed.)

[plantime]

Perhaps we even live better and healthier because we do not eat all of the overprocessed foods. It is not that hard to eat gluten-free, it is not wanting to give up the conveniences of eating wheat that is hard. Let's face it, bread makes a great disposable plate. Put hamburger and a salad on it, and call it a meal. After everything I have been through this summer with a few drugs that were meant to make my life better, I don't think I want another pill that would cost more than I could afford, and cause horrible side-effects.

[ashlee's mom]

Michelle, I know just where you were, because I was there in March when my daughter (then 4-1/2) was diagnosed. Looking back, we can also see symptoms have been around for awhile, but other then the slow growth, it went undetected. I know how overwhelming it is when they have been so sick (she also suddenly got really sick) and there is so much to learn to keep your child healthy. To tell you the truth, there are still days I wish I could just give her a pill, but on the whole, I am very thankful that it is a disease that is completely controlled with diet. You really do get used to everything, believe it or not, and once you see your son start to gain weight, have energy again and just feel better then he has in years it will all be worthwhile! Now when I frantically ask my dh to make sure he didn't put a knife back in the jelly or something he just looks at me like I'm crazy! We are all so used to the adaptions we have made it just feels like second nature to us. I'm sure you are bombarded with information, but one thing that really helped us was the advice to go lactose free for the first 6 weeks. At first I felt so bad limiting her diet even more, but her little tummy just couldn't handle it, and it really did help her recover. To top it off, she was so excited to have dairy products again when it was over, she really didn't miss the gluten as much! How is your son's appetite? My daugter didn't get her appetite back for about 2 weeks, so encouraging Pediasure really helped in those first days. Then when she wanted to eat, she really made up for lost time! She lived off porcupine meatballs for quite some time! It helped to have something she liked while I found things we could all eat that are naturally gluten-free. If you need anything at all, I would be glad you help you through it all!

Michelle

[kathyhay]

I think that it is a really good question-- in fact my husband asked me the other day the same thing. Except he was thinking this: if there is a pill that lactose intolerant people can take and then be able to have dairy, then why not for gluten intolerant people? I would like an answer to that question.

[tarnalberry]

Because lactose doesn't cause damage in a pure chemical reaction. (It gets left in the digestive tract to get broken down by bacteria which release gas as a byproduct.)

Because it's all a basic chemical reaction in the gut, you've got to "neutralize" _every_ molecule of gluten. That's a huge chemical dynamics challenge, particularly in the human body.

[Guest Libbyk]

Michelle-

I wanted to add to this post, becasue your question targets a very basic philosophical approach to this disease. Is the disease something horrible that happened, that will limit my life? Or is it a part of my life that I can adress, and live with , and learn from? And still eat happily for the rest of my life, pill free?

I know for me, I was sick for so long that I didn't kow I was sick. I thought I was just a boring and lazy and irritable person. (Amazing how that awful person comes out as soon as I have an accident!) So for me, having a tool with which to handle my disease has truly changed my life. these days I am happy, emotionally stable, energetic and more.

Anyhow, for me, the diet is NOT A HARDSHIP. The horrible times for me are when I get contaminated, and despite my BEST efforts, and those of the people around me, I get sick. But love to eat, and especially at home, never feel deprived. (I have probably eaten more brownies (gluten-free) in the last 10 months than in the rest of my life together! In fact, I had to tell my mom to stop- getting a little belly...

I am so grateful that my disease is under my control, independent of drugs. In fact, I am very certain that a huge overdose of antibiotics when I was 14 triggered it initially. diet enable me to take control over my life and my health and that is a wonderful gift.

My favorite book on the topic was "Against the Grain." the woman who wrote it is very knowledgable, and also quite funny.

good luck with your little boy, I hope he has wonderfully lush, healthy intestines soon

Lib (10 months gluten-free, 24 yr old)

[Boojca]

Michelle,

I was you in June. My son was 2 1/2 and went from 27 lbs in December to 23 by June, bloated belly, no energy.... When he was diagnosed I felt sooo alone, and so scared. Then I found this group, and a couple others, and now I feel "like an old pro".

That said, here you go my own opinions:

Best Book: Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn. GET IT. It will change your life.I bought one for me, my mom bought one, and I bought one for my daycare provider.

Best Cookbooks: Bette Hagman Gluten-Free Gourmet:Living Well Without Wheat REVISED edition and Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes

Bread Recipe most like "real" white bread: Tapioca Bread recipe in the Bette Hagman book. It's amazing. You won't even believe how "normal" it is.

Most "normal" tasting & "acting" pasta: Tinkyada

Feel free to contact me if you have any other questions. This will get better, I promise you.

Bridget