His celiac's blood test is positive

Discussion in 'General Parenting' started by TerryJ2, Jun 6, 2008.

  1. TerryJ2

    TerryJ2 Well-Known Member

    I had difficult child tested for celiac's disease this wk. The dr's ofc called and said the blood test came back positive. They are referring us to the local children's hospital for further testing by a GI specialist. After doing an online search, I'm thinking they'll do some kind of a procedure to take tissue from the small intestine to see if the villi are flattened, which is going to be very uncomfortable for difficult child.

    Despite the fact that, unchecked, celiac's can lead to intestinal cancer, dementia, and type I diabetes, (isn't the Internet fun?!) the good news is that it probably explains where his skin allergies came from (with-the exception of grass), and where his anemia came from a cpl yrs ago (we supplemented with-a tsp of iron for a yr and his levels evened out). It also explains at least some of his irritability, where all or part of his ADHD comes from (we already knew that wheat made him hyper), and is connected to his lactose intolerance. (It's hypothetical if it causes it, just that there is a link.) Since it's connected to so many of his health issues, I'm even wondering if it's connected to his glaucoma. It wouldn't surprise me, since glaucoma is often an outcome of diabetes..

    His maternal bio-grandmother has diabetes, and his bmom is overweight and has been hospitalized for unspecified digestive issues, too, so I'll call and tell them that they should be tested for celiac's. (How ironic that the adopted kid is the one telling the rest of the family what they may have. Ain't science grand?)

    The other good news is that from what I've read, within a yr, with a very strict non-gluten diet, his body should be "normal" and be able to absorb all the nutrients he needs with-o supplements.
    Of course, he will be on a gluten-free diet for life.

    He took the news relatively well. I didn't tell him that more tests will tell us definitively ... I just know we have not been strict enough with-his diet, and that he will pay attention to blood tests and doctors b4 he will listen to Mom or Dad. He was very concerned about out fave Italian restaurant, and I told him that I'd talk to the owner and discuss the menu and that he'd probably keep rice pasta on the shelf just for us. He was worried he'd never see the owner's son again (they play video games in the ofc while we eat) and I said of course he'd see him again.

    I found a place online that explained how the extra cost of specialized dietary foods is tax deductible. I actually found the codes in case the IRS balks! Still, it remains to be seen until we actually try it.

    It is going to be a struggle with-the diet but I am so glad I had the test done. Lots of people don't find out until they're adults.

  2. gcvmom

    gcvmom Here we go again!

    Glad you found out about the diagnosis and can begin treating him for this! The biopsies really shouldn't be a problem. My difficult child 1 had 13 tissue samples taken last month during an upper and lower GI scope and was no worse for the wear. The prep for scoping is the biggest drag, but you can ask if they'll let him take Miralax instead of the usual magnesium citrate (nasty stuff). Miralax is sold OTC now and is a white powder with NO taste and NO smell. You just mix it with a clear beverage (apple juice, Sprite, water, even chicken broth) and that's it! difficult child 1 had to drink it with 80oz. over the course of a day for his prep the day before the scope. Nothing solid to eat on prep day, just clear liquids. There was no painful cramping, just lots of loose stool and he got through it fine.

    The good news is that there are LOTS of gluten-free options available in markets now, whereas 10 years ago it was a real struggle to rebuild your diet around that. You'll get really good at reading labels and scoping out which restaurants have gluten-free choices.
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad you have some answers. I hope the test goes well and that you start to see improvements.

    You're right about lots of people not finding out until they're adults. My mom just found out a few years ago she has it.
  4. Fran

    Fran Former desparate mom

    It's absolutely wonderful that you pursued this until you had answers. A year isn't a long time to re balance difficult child's system and I'm betting once he feels better the diet will happen naturally.
    Give yourself a pat on the back that you have unraveled parts of the mystery that is your difficult child. Warrior mom's rule.
  5. jannie

    jannie trying to survive....

    I'm glad you figured this out--Things have come a long way in terms of having more foods availalbe....You do know that many of behaviors you are seeing could be related to the Celiac...(which is why my kids were tested)...and that you could possibly see great improvements once things are treated. This well-known nutritionist who had seen my kids strongly advocated how diet and behavior are strongly related. My kids tested negative....we never changed their diets and they continue to be difficult child.
  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    One of my very good friends has a neice, who she helps raise, who was diagnosis'd with celiacs about two years ago. I will tell you that it has made a huge difference overall with this girl, behavior, attitude, grades, social, all of it!

    It was definately a challenge at first, but retailers have responded to the needs of the public for gluten-free products.

    As Fran said, good job with the warrior mom mode!!!! Keep us posted.

  7. slsh

    slsh member since 1999

    Terry - :yourock:

    Further confirmation that mom's really are the experts. I'm so glad you followed your gut (ewww, pun????) and that you have an answer. I have no doubt that you will conquer the challenges of the diet requirements.

    Glad difficult child took it well. Really, I can't help but think this is really probably some good news. An identified problem that can be managed.

    And yeah - ain't the internet just grand. ;) We can learn far more than we ever wanted to do. But... being informed is a good thing at the end of the day, right?

    Great job!!!
  8. Josie

    Josie Active Member

    Once you get used to the diet, it isn't a terrible thing. A good internet resource is at www.glutenfreeforum.com.

    Some celiacs are able to tolerate lactose after some time on the gluten free diet. Some, unfortunately (like my kids), have a problem with casein, the milk protein. This is thought to be more permanent. Some people also have a problem with soy. In some ways, once you are eliminating milk and gluten, it isn't that big of a deal to get rid of soy, too. Since you are already cooking from scratch. Just something to watch for as you change his diet. One of my daughters continued to have stomach problems when there was soy in her food.

    I make my kids treats. They are much better than what you can buy. Even their friends like them. If you want any ideas for mixes or recipes, let me know.

    I think you will begin to see big improvements in your son's problems as you implement the diet changes. Good luck!
  9. Josie

    Josie Active Member

    I forgot to say that many people are diagnosed with celiac disease without the biopsy. The biopsy takes a sample from the small intestine and looks for damage. It is possible for them to take a sample that isn't damaged when you consider how long the small intestine is and how few samples they take. It is also possible that the intestine hasn't been damaged yet but will show damage later. Since your son has been somewhat gluten free, it is especially likely he won't have damage.

    Some people opt not to put their children through it and do the diet anyway. It still might be worth doing because if it is positive, no one will be able to tell him later that he doesn't have it.

    I just had the procedure. Typically for celiac disease, they scope the upper GI tract. The cleansing prep is not necessary. I just had it done and it is no big deal before or after.
  10. TerryJ2

    TerryJ2 Well-Known Member

    Thank you all. And thanks for the Miralax suggestion.
    I have pretty high hopes, but I know it will get worse b4 it gets better because he's a stubborn one.
    He just took off for a beach trip and I told the dad who was driving that difficult child couldn't have wheat on his hamburgers and hotdogs. difficult child glared at me and I know he thinks I ruined his day. One of many ...
    It's one thing to eat Mom's food at home, and quite another to have others know publically that you can't have wheat or milk. Sigh.
    Yes, I am glad I followed my gut :)
  11. susiestar

    susiestar Roll With It

    I am so sorry. It will mean big changes for him. and you. At least you will probably see big positive behavior changes. I had a friend in college who was diagnosed with celiac. She was a MAJOR partier, and a total difficult child. After all the diet changes she was a different person. Not only did she LOOK healthier, she smiled and she was a real sweetie. A total easy child, and it was amazing.

    If you have the procedure done and it does NOT find celiac, will you have problems getting him to follow the diet?? Just wondering.

    While this is a concern, at least he is young so maybe will have avoided most of the damage, and it is treatable.

    If he is in a school that has federal funds for lunch, you will need to meet with the cafeteria person. They will provide lunch for him (are required to by law) but you will need a doctor's prescription AND some forms filled out by the doctor. Depending on the health issue, he may qualify for free lunch even if you do not meet the income guidelines. But that is iffy. Providing a lunch he can eat when he is getting a school lunch is required though. You may need to give them a day's notice or so when he wants a school lunch.


  12. MyFriendKita

    MyFriendKita Member

    Some brands of hotdogs have gluten in them, so you have to watch that as well. When in doubt, I usually google whatever food I'm looking up + gluten free to see if it's okay or not. At first it seems like you can't have anything, but as the others have said, it gets to be almost second nature. Here is a list of grocery stores/restaurants/bakeries that has been helpful to me:


    I've figured out how to eat almost anything I was eating before-they even have gluten-free cookies, doughnuts, etc. (unfortunately).
  13. TerryJ2

    TerryJ2 Well-Known Member

    He's in a private school and they have lunches that we are billed for. I make his lunch and rarely let him eat theirs.
    I doubt the biopsy will find serious damage, but have no doubt that he does have celiac disease. All the pieces fit together, andwe've been aware of his wheat allergy for some time. Our allergist pointed it out, too, just in case we missed it! It's hard to find allergists who are into noticing behavior instead of just rashes.
    So, yes, we will absolutely stick to the diet no matter what the outcome of the other tests.
  14. TerryJ2

    TerryJ2 Well-Known Member

    Thank you! I knew some hotdogs had dairy, but wasn't aware of the gluten. Sigh.
  15. witzend

    witzend Well-Known Member

    Wow, what a relief that must be! Keep us up to date on how everything goes!
  16. TerryJ2

    TerryJ2 Well-Known Member

    Well, so far I've cleaned out most of the wheat from the fridge and cupboard, and even found some frozen fish breaded in rice. Ggf heated it up for himself and he hated it. :( He did eat an entire box of gluten free cookies though.
    Trial and error.
    I don't know how we're going to handle camp, unless we can send along some food. I think it's going to be one of those semi-neglected areas until Sept. Sigh.
  17. Josie

    Josie Active Member


    Call the camp and ask if they can do his diet. You might be surprised. I had my kids signed up for a camp here before we found out about their diet needs. The kitchen director was very knowledgeable about the girlfriend diet and was able to serve them.

    This year, my older one is going to a camp at a college and I'm having to send food for her that they will make. I'm prepared to face some mood issues when she gets home.

    There are also camps for kids on the celiac diet. I love to send my daughter to this so she can meet other kids with the same diet restrictions and because I don't have to worry about the food.
  18. ML

    ML Guest

    Everyone is right -- you rock! Great job, mom, in getting to the bottom of things. This diagnosis explains everything. I am so happy that your hard work and energy paid off! Hugs, ML
  19. TerryJ2

    TerryJ2 Well-Known Member

    Thank you. I will definitely call camp and talk to them, and probably send along food.
    husband thinks the behavior issues will clear up in 2 mo's. HA! I'll give it a yr.
  20. Christy

    Christy New Member

    Good Luck with the new diet. Hopefully you will see some positive changes in difficult child to go along with the nutritional changes!