Personal My 8 Yr. Old Daughter Diagnosed W/ Celiac Disease

[sherri lynn]

I took my 8 year old daughter and 9 year old son to pediatric endocrinologist yesterday d/t poor growth. My daughter has had "stomach hurts" complaints for about 1 year and I have been told it's everything from constipation to attention seeking behavior (I have 6 children total, 5 ranging from 11-6 years old). I thought maybe it was attention seeking behavior, it was never constipation. Then, when we went to the specialist yesterday, he said he would run tests but felt she probably had Celiac disease, which was contributing to her stomach aches and poor growth (she's 8 and weighs 44 lbs.). I feel so bad. It never occured to me that Celiac disease could be the problem (I was a RN for 14 years before staying home with my children). I just feel so guilty that she's been hurting for so long and it's due to what I am feeding her! And when I look gluten free diets up or Celiac disease on the internet, it seems so overwhelming! It looks like a total lifestyle change. Does anyone on here have any experience with this? I just feel so bad. Thanks for letting me vent, I don't want my family to know just how much this has upset me.

 

[ChefBeckyD]

We had to make a total lifestyle change this past summer/spring. We are now Gluten/Corn/refined sugar/artificial food coloring free.I remember the same feelings. Here, I thought I was feeding my son healthy foods, and come to find out - those foods were the very things making him sick! It broke my heart. BUT - I decided to look at it as a challenge - and to learn everything I could about cooking gluten-free. For me it was a double whammy, because so many things that are gluten-free use corn in the place of wheat, and my little guy also has a food intolerance to corn. There are some great blogs out there for people going gluten free - I'll go find some of my favorites and post them for you. They helped me so much in understanding and giving me hope and recipes!I also have a bunch of tips and recipes on my Fan Page on FB, if you want to check that out.http://www.facebook.com/home.php?ref=home#!/BeckyDeemter((((((BIG HUGS)))))) Before you know it, you'll be a Pro at all of this!Oh, and because we changed our eating here - I've discovered that I must have some of the same issues as my son - my own health has greatly improved, and I've lost about 20 lbs without even trying!

 

[WendyE]

I am the Mom of 2 celiac children. Diagnosed for about 6 years now. They were in 1st and 3rd grade at the time. Your story is soooo familiar to me and I feel for you! But I am here to tell you that although overwhelming at first, you will adjust and cooking gluten free will become a way of life that you will barely think about some day! I know it's hard to believe right now, but I promise you will become an expert in no time. I remember being in my own private hell for a while. Every meal feeling like such a huge job and wanting so bad for my daughters to not feel deprived in any way. I had to mourn the loss of my ability to provide for my family the way I had always done it and learn something new. Because we are Mom's, we have the drive we need to figure this out and make it all ok for our family! I am here for you and you can contact me any time with any questions! I remember what it was like and want to help anyone I can get through that learning curve. If you can learn from my 6 years of experience, then I want to share so you can! It will save you time and lots of money! GF food is very expensive. I can make anything gluten free now and most people never know the difference. My kids eat school lunches almost every day. All of this takes time, but you will get there! It's going to be ok now that you know what you have to do! Don't feel guilty - you had no way of knowing. Heck, even the doctors didn't know, so give yourself a break and just focus on what you can do for her from here on. For my daughter, who was very sick for about 5 months, she was better within just a few days of taking her off gluten. She came right back to life! So she will feel better very shortly. Did they just do a blood test? Do you know that the blood test can be unreliable and just a first indication of celiac? The only way to know for sure is to do a biopsy of the intestinal wall. You should not take her off gluten until this test is done, or the body could heal and make it harder to diagnose. Sorry if you already know all this. Some people don't go ahead with the biopsy and just take the gluten out and see if they feel better. I felt that if I was going to condem my children to a life without gluten, I wanted to know FOR SURE, so we did it. Also, have siblings tested. Very high chance that siblings will have it as well, even if no symptoms. My other daughter had NO SYMPTOMS whatsoever, and was tested and her antibodies were off the charts! She had a biopsy too and although not as severe as my oldest, she did have minor blunting of the cilia that indicated a definate diagnosis of celiac as well. We never would have known!

Please feel free to contact me with questions and for support! Send me a private message and I will send you all of my contact info. Best wishes to your family as you go through this change. It's going to be ok! At least there is a fairly easy cure! That is what I always remind myself.

 

[sherri lynn]

I want to warmly thank you two for sharing your experiences with me. I do appreciate it. I am sure I will be PM'ing you with questions when I come out of this fog I seem to be in. Thanks so much, it did help to read your experiences!

 

[nikked]

DEFINITELY wait to go GF until the biopsy is done...a friend of mine whose whole family has been affected didn't do it, and they are forever battling over the diagnosis...

Also, I have heard that if you have a medical diagnosis of celiac, your GF foods can be considered a medical tax deduction...we're not affected, so I don't know this for sure...check with your accountant about that!

The crockpot site that everyone loves has a ton of GF receipes on it... A Year of Slow Cooking

 

[ChefBeckyD]

This is a great blog with some of the BEST gluten free recipes.

Gluten-Free Girl and the Chef


And this is another - amazing, because this girl is a teen, and yet she has a great writing style, and some really great recipes!

Celiac Teen



I love reading the GF Blogs, because they offer so much hope knowing that all of these people have also found a way to cook and bake GF, and have it taste like normal food!

 

[lesliec]

Hugs to you.
I've never had to deal with this exactly, but have dealt with a severe soy allergy (one of those things that is in everything that you buy). We were foster parents and I had a boy for 17 months who had a soy allergy. It was actually diagnosed shortly after he came into my care. You get in the habits of making things that work, always having appropriate snacks (since you can't just stop somewhere), and doing what it takes to not make the child feel out of place. It is tough, but when you trust in the Lord, he will give you the ability to care for your children. He gave them to you b/c he has best equipped YOU to be their parents.
In my situation, I even taught the biological mother how to care and cook for her child. A really tough situation, but one that really grew and blessed me.

 

[sherri lynn]

I really do appreciate the posts. My diliema is that we do not go back for another appointment until next JUNE! I can't in any way continue to feed her food that I think may be hurting her, but you all have made excellent points about the biopsy! I'm torn at this point, and unsure what to do. Thank you for sharing your stories with me.

 

[esavvymom]

I really do appreciate the posts. My diliema is that we do not go back for another appointment until next JUNE! I can't in any way continue to feed her food that I think may be hurting her, but you all have made excellent points about the biopsy! I'm torn at this point, and unsure what to do. Thank you for sharing your stories with me.

Just because you don't have an appointment until June, doesn't mean you can't call the doctor's office and ask the questions about it! Take control and find out the answers you want.


I just took my kids to the eye-doctor today (first time) and found out my 7 yr old needs glasses. He's sort of a hypochondriac anyway at times, and stresses out over things....and so we just figured when he complained about not seeing words that he was being dramatic. (Mind you- he was saying "I can't read the back of the ketchup bottle...it's all dots"..when it was sitting about 20 ft away on the kitchen counter! I can't read it there either and I have 20/20 vision! So that's why we ignored it). But after getting him fitted for glasses, I told him tonight at dinner, that I was sorry for not listening to him. My DH said the same thing- how he felt guilty about it. It's tough. So I can sort of relate....although mine is alot easier to manage day-to-day!
Good luck!