New here - new to everything!

Nicole - posted on 09/23/2009 ( 9 moms have responded )

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Hi there - new here, have many questions! First, a little background. My 4.5 year old son just had blood work done showing a positive result for celiac. His results were 1616 (normal's 120). I thought it was a ttg test (I question myself because now I know other tests can be used and I'm trying to remember the lab slip from memory). It was kind of a tag along test and wasn't really expecting it to result in anything! We're awaiting a GI appointment and confirmation so we haven't done anything yet other than look up info on celiac disease. A lot of it makes sense in retrospect. I had pre-eclampsia and so my son was born slightly early (@39 weeks - not technically early but since he wasn't coming, early for him!). Despite a bad case of acid reflux, he was a good baby and grew well. He's always been tall for his age though his weight's been steadily dropping according to the charts. What set off the question in the pediatrician's mind was a question I asked at his 4 year check-up. I asked about his bowel movements and how many he seemed to have and how they'd go back and forth between diarrhea and normal ones just within a day. I wanted to know if it was normal since it just kept happening. He suggested a celiac test but we didn't push it since my son was already undergoing other tests and unknowns at the time. Turns out he had a fungal infection that affects the lungs. It's all around the area we live but most people aren't affected by it. We didn't understand why he was showing symptoms (but if he's had celiac, that would suppress his immune system and explain it). Anyway, once on anti-fungal meds, his bowel movements seemed to improve somewhat so again, I didn't think about and just thought the next time he had blood work we'd tack it on just to lay the matter to rest. Well, at the beginning of the month I took him in for unexplained leg pain and limping (another cancer scare, not fun!) and had blood drawn. Tacked on the test and here we are. So questions...



1. Any advice that you would have liked to known at the beginning.

2. Would you have siblings tested (as well as parents)? I have a 2.5 year old son and a 3 month old baby (obviously she's too young). I plan on doing a test and my husband's wishy/washy. He's really taking it hard - already grieving for the lost "American" eating lifestyle. And I think he's afraid of testing positive.

3. Dealing with relatives/friends who just don't get why your child(ren) have to remain on a gf diet. My MIL visited and we briefly discussed my son's situation and she was basically like, "Oh a little here and there won't hurt. Just when you eat a lot." This from the same woman who gave my niece a bottle of pop when she was little and one who eats fast food at least once a day. We have a civil relationship and I encourage my children's relationship with them as much as possible but I will not let them have them for a visit if she's going to be so flippant about it. I tried explaining what celiac disease is and why you have to be gf but she's the type who doesn't hear what you say because they think they either know what you're talking about already or thinks they know best anyway.



This was long. If you're still with me, thanks! My daughter's been fussing so I hope I didn't forget anything!

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9 Comments

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Heidi - posted on 11/06/2009

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Hi Nicole!

I wish I had seen your posts sooner than today! I started this group and a while back I changed my email address but forgot to update so I haven't been getting notifications!

I am sorry you are going through all of this, I can relate!! My son Sam, who just turned 6, was diagnosed with CD last December at age 5. Luckily for me though, it was not too difficult of a transition to make since I was diagnosed 5 years ago myself. I have been learning though on raising a child with CD as there are so many other things to consider, like art supplies, eating at the school cafeteria, 504 Plans, etc. I can totally relate with your situations with family too, I was "un-invited" from my mom's house for the holiday meals after I decided to quit "cheating." Anyhoo, 2 years of therapy and 1 blog later...I LOVE the gluten free life! It is a journey no doubt.

I blog about all of these things and I do recipe conversions for things like goldfish crackers, spaghetti o's, oreos, Happy Meals, pizza parties, GF art supplies,etc. Please check out my blog: www.adventuresofaglutenfreemom.com and feel free to email me at anytime should you need anything.
heidikelly13@gmail.com

Last note: I went undiagnosed and untreated for 20+ years and even though my villi are now healed, I have several other autoimmune diseases that didn't need to happen. I will be dealing with them for the rest of my life. You have found your son's CD quickly, and now maybe you can prevent anything else from happening as a result of untreated CD. You R.O.C.K. mom! :-)

Barbara - posted on 10/29/2009

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Oh forgot to tell you once he's on the gf diet he's villi will repair themselves it will take 6mths to a year but it will repair it's self.

Barbara - posted on 10/29/2009

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Hi, Well at least you know now. The biopsy isnt' that bad and he won't remember it be brave, it's hard i Know. As for cleaning the kitchen we didn't get rid of everything, new cutting boardsI cleaned the kitchen cupboards and still do every 4-6 months just as you would normally. I just did one of mine last night. Remember we are not totally gf in our house we have our cereal and pasta and bread and works good. He'll have to get used to seeing other people eat the food too. It will be good once you get into it you'll see it's not that bad. He'll have a lot of questions for you and just be honest with and tell him what is going on. So when you are out he'll always know to ask if he can whatever it is to eat. We taught Halle from an early age of 18 months and my son who is not celiac and is 4 gets that she can't have gluten and knows things she can and can not have and watches out for her. I recommend if you don't have one and can squeeze it into the budget or maybe a xmas gift a kithchen aid mixer since you'll be doing all your own baking. Totally worth the investment I had mine before b/c I like to bake and coook but would be lost without it, it makes baking so much easier. Made a wonderful gf carrot cake ont eh weekend for my dad's b'day everyone loved form the Gluten free Baking and more site it was not the low fat recipe but the other one. Halle also encountered her first kids choice lunch at school last week. This is where they order in a hot lunch for all kids it was pizza and pasta from Boston Pizza, so I made her a gf pizza and wrapped it up so it would be semi warm and she was able to have pizza like everyone else. She was really good about it too, it makes me very proud of her. This weekend for Halloween we have the tradition of always making pizza so homemade gf pizza I have a great reciepe we found off the internet a few years ago. Everyone loves it my parents can't believe it's gf which is great to know.



Please keep in touch it is wonderful to be able to talk to another parent who is going through the same thing!

Nicole - posted on 10/19/2009

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Hi Barbara, my son had his endoscopy today and the doctor saw damaged villi in the small intestine. He's positive it's celiac but he said to wait for the biopsy results (another week). And then we'll schedule a family session. So I'm in the midst of cleaning out the kitchen and buying new kitchen equipment as needed. We'll be going totally gf here in a few short weeks.

Barbara - posted on 10/02/2009

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Check out to see if there is local bakeries in your area for gf we are very fortunate we have a wonderful store/bakery that is gf, dairy free and they are very helpful. My daughter Halle has a friends b'day party tonight and I'll have to bring for her is cupcake, they will have veggies, dip and fruit so it is great. We ate at McDonalds the other night for dinner our fast food restaurant as she can't eat anywhere else, fries hamburger with cheese no bun and chocolate milk. I know you'd have to check into the dairy party or it.



How wonderful on the appt being on Monday. Good luck. I found bringing a list of questions for the dr was good and also always got Halle involved that she could speak for herself as well. Our dr's were great in that they talked to her too and not just me or my husband b/c it's her living with it which I think is important. Lunches aren't so bad she seems to be doing okay with bringing lunch to school we try all kinds of thinks, pasta in her thermos, sandwiches with her bread, we make our own lunchables(I've heard the ones in the store are not good any way) meat, cheese cracker and veggies always two fruits. Both my kids love fruit bowls. It's so nice to be talking to another mom who is living through this.

Nicole - posted on 10/01/2009

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Thanks so much Barbara! I'll definitely check out the sites/info you mentioned. I plan on doing gf lunches/dinners/baking to make it easier on me but breakfast cereal, breads, snacks etc will be mixed (gf for my son obviously but not necessarily all of us). We'll see how it goes.



My son's appointment has been bumped up - to Monday actually. There was a cancellation and I took it. I'll keep it touch and let you know how it goes.

Barbara - posted on 10/01/2009

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It takes getting used too and in the beginning it's not easy but we've been living with it for a while now and I don't really think about it. Spoons are used for jam and peanut butter, mayo etc, she has her foods and we have ours. She is very good and we have tuaght her from day one when she was diagnosed she must ask if things are okay to eat. She is very aware and knows the things she can and can not have. We have our cereal and she has hers, same with pasta, bread and crackers. There are some great websites too. Living Without which they put out a magazine and Gluten free baking and more great site you have to subscribe to this one but totally worth it. I get alot of my reciepes from there, They have a wonderful chocolate cake, carrot cake, lemon loaf and theyh ave things for subsitituions since you are also casein free. Look into it. Our local bakery here has a gluten free baking mix which I use and substitute cup for cup in my regular baking reciepes and they always turn out great. Living without also has flour mixture that I have heard from friends is very good substituting in your old reciepes. Your husband will come around and once he sees how much your son is thriving and doing well on the gf diet that is all that matters. My daugher is happy and well adjusted. Don't get me wrong there are times she doesn't like having celiac and it's for her and I am sure as she gets older it will be harder but in grade one she has a very good set friends that understand and don't think twice about it or make her feel different. Please keep in touch as I will be interested to know how your appt goes in November!

Nicole - posted on 09/29/2009

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Thank you for the kind words! I agree, I'd rather deal with this than a peanut allergy. And I don't think the gf lifestyle will be bad at all either. I try to tell my husband this but time and experience will hopefully show him this. I'm already on a casein free diet (because of bf daughter) so that may end up being tricky. I plan on doing gf with my son whether I test positive or not. He's four and I think it'd be hard to eat gluten items right in front of him. We'll see how it goes. We don't have our GI appt until November so we have time to gather info and get used to the idea.

Barbara - posted on 09/29/2009

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Hi wow sounds like you have been through alot. My daughter was diagnosed at 18 months and she had alot of poops and they were mushy, she is now 6 1/2. I think don't panic b/c once your on the gf diet it's really not that bad. We make everything from scratch so it is more time consuming and I miss just ordering out on the nights I don't feel like cooking. We have all been tested my husband, myself and our son who is 4 going to be 5 in January and we don't have it. My son was tested for the gene and they figure he will probably never get it. We were told by our dr that our son would be tested every couple years but now that they feel he won't have it maybe every 5 years or so he'll be tested.



Our relatives and friends have been wonderful. They are accomodating and I always call ahead when we are going for dinner or if my daughter has a b'day party to go to I always call to see what they will be serving sometimes I have to send something for her or bring something other times and most times people are very good at accomodating her. They want her to feel comfortable at their homes. I always have cupcakes in the freezer for b'day parties and now she is in school get invited to alot of them.



We still go out to eat and know which restaurants are good and not. The grandparents have been wonderful and take the precautions including watching for cross contamination. Show them pictures of what it does to someone's stomach, give them material to read about what may happen if they don't adhere to the gf diet.



As for the "American" eating lifestyle think of it this way, we eat way more healthier b/c everything is made from scratch which is a good thing. We still have french fries and all that too but we just eat healthier. I make pizza, and chicken fingers, donuts, cakes, pies, cookies, pasta at least once a week. She takes sandwiches to school with her gf bread which we get from a bakery close to us. We were nervous too in the beginning but in the end it is not bad. My daughter is healthy and happy. Sometimes it is hard and she says she wishes she didn't have celiac and my heart breaks for her. But she has a boy in her class who has peanut allergy and in persepective I'd rather have Celiac!



I hope all goes well with the testing.

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