Mom Of Adoptive Son 2 1/2 Years Old

[Kujda]

My son came to me when he was 18months old. At that time he had only been fed smushed peas,vitamin d milk and ketchup. His birth mother willingly gave him up for adoption and I still speak with her but there is no known birth father so medical history is incomplete.During this past year my son Abraham began eating solid food which of course included gulten. Since then he has had lots of problems with constipation/diarrhea. skin rashes, irritability and 4-5 days of not eating because his bellly was bloated. After several doctors one told me to take him off wheat due to a rash on his bottom that had been treated for staph infection. Shortly after that his bottom cleared up and his bowels improved. Then we were sent to an allergist who stated that he was fine with no allergies and the wheatless diet wasn't needed. Of course extended family though I was being over protective and he began to eat bread and pasta etc. All the same symptoms came back. Then I heard about celiac disease from a friend and began researching it and it is my son! We continued to see doctors and get bloodwork done but everthing was negative. Of course he was still feeling horrible so I put him on gluten free diet. He has been on it for 3 moths and is a whole new child! During this time I also found a doctor who was willing to refer us to a GI. We are still waiting on the results from the blood test. Of course I didn't know not to put him on the gluten free diet until this testing was done but I have been told for year everything was negative. Even now people think I over react to his diet but I have seen what gluten has done to him and how great he feels when it is gone.

Thanks for listening and I can't tell you how great it is to read stories that mirror my own. I was starting to think I was crazy and overprotective!

Also if any one knows of any articles that may be informative to my family and express the seriousness of this allergy I would appreciate the info.

Kristin

[Izak's Mom]

Welcome Kujda! This is a great site - all kinds of useful info. I don't have anything in mind offhand as far as what you could give your family, but I'm sure you'll be able to find something here. Actually, Open Original Shared Linkis a great gov't link that basically explains what Celiac is. My son has also never had any "positive" tests, but the real-life results speak for themselves! After nearly a year of being gluten-free, my son has never been healthier. Good for you for sticking with your gut...'mother's intuition' is sometimes a lot more valuable than any test!!

[Nic]

As I am sure you have already read, the tests aren't always accurate with children (or adults too for that matter). Especially if you already had him gluten free. A postive response to the gluten free diet is a "postive" result in itself. If it wasn't gluten, he wouldn't be feeling better off of it. I can't think of anything for your family to read either, short of this website, but as with anything else, if you got sick every time you ate chocolate, you wouldn't eat chocolate anymore (or you shouldn't anyway). Same thing with gluten, even without a positive diagnosis, if it makes him sick he shouldn't eat it. You know your child best.

Nicole

[Nathan's mom]

Aren't you glad you stuck to your guns and found out the reason for your son's behavior and physical symptoms? It wasn't until my son was three that he was acting too oppositional and whiny. Everyone assured me that was just normal for three. "Three is a really difficult age" they would tell me. Still I knew something was triggering it. It just didn't seem right to me.

I have sent links to my family about celiac, but I still don't think they really get it. I was recently commenting to my mom about how excited I was to have found a good recipe gluten-free for carrot cake and how it would be wonderful to serve my father-in-law's BD cake to my son (no separate piece or cake made for him). She said, "Well, you could always take a slice out and insert his special slice in there so when you serve it out it looks like he is getting the same thing". Hello? Gluten crumb nightmare!

Still, I think they will understand in time. They will probably have to hear a report about it over the news or a talk show to finally get it.

You are not overprotective - you are his mom. And from one adoptive mom to another - Trust your instincts!!

[gfgypsyqueen]

Hi Kudja,

First that's great that you adopted him! Sounds like he has a great home and loving mama! Keep doing what you think is best for your son. Incomplete medical history is just part of adopted children's lives both when they are kids and when they grow up. I think that is one of the hard parts of adoption - no medical history or family issues to know about (heart disease...unknown).

Regardless, as for your family and celiacs. Buy some books, print out the statistics and hope for the best. But in reality, the extended family just will never get it. At best, hope that they understand that this is a disease, he will have it for life, there is no medication and no cure. The only thing to do is manage the disease through the diet. In one way it is a blessing - no side effects from medications! I had enough of that!! Teach the family about cross contamination issues too.

We have children with severe food allergies and I have celiacs. The extended family still does not get it. I have strict rules and the kids know the rules and the grandparents are figuring out that if they want to see the grandkids on their own they have to learn about the allergies and follow the rules. It is amazing how hard some people fight when it comes to allergies and diseases.

Always pack food and bring it for your child. Do not rely on family being able to cook a safe meal until they really understand the diet. Generally, I bring great desserts for everyone to parties. Flourless chocolate cake with berries and whipped cream is always a big hit.

If your child attends a daycare start a new post for what you need to know about schools and celiacs. (no play dough etc.)

[Kujda]

How wonderful to hear from you all. Today I received a call from the doctor that said the test came back negative and wasn't that great tp hear that he didn't have celiac?! She left it on my voicemail so I haven't had a chance to "speak " with her. I told some family and they were like you worried all for nothing. Had I not read the messages from everyone I might have questioned myself and thought I was over-reacting. I can relate to everyone's story from child's behavior(no one ever wanted to babysit) to family not understanding. This may sound crazy but i cried with relief to know that I am not alone and doctors don't know everything!

Thanks for the support and I will let you all know about our GI appointment.

Kristin