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Thinking we may have a celiac diagnosis coming :-(

Discussion in 'Parents of Children with Type 1' started by slpmom2, Apr 2, 2013.

  1. slpmom2

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    Hi, Everyone -
    I haven't posted here for quite a while, but thought I could use some of your excellent insights and support right now. My 11-year old dd, dx'd with D a little over 5 years ago, is having some GI problems that I'm terrified are going to get us to a celiac diagnosis. She's been incredibly gassy for several months now, and is often constipated, but until recently no other symptoms. We've tried cutting out dairy, with no effect, and have tried about a week of Miralax, also with no effect. The past 2 nights she's complained of really bad stomach aches. We haven't tried cutting out gluten yet, because it would be such a huge disruption. Going to the endo on Thursday and will ask for bloodwork, and really afraid of what it might say.

    So, with that said, I need a little encouragement from those of you living with both D and celiac. What should we expect if we do get this diagnosis? How did you and your child adjust to the news of a second diagnosis? Any thoughts on how to cope or help my dd cope?

    Really, really hoping it doesn't turn out this way, but just trying to prepare myself in case it does.

    Thanks for any insights you may have.
     
  2. kim5798

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    I think it helps the child adjust if the household goes gluten free. Kind of solidarity. At our house, we do our group meals gluten free. We do buy regular bread for those of us not gluten free for lunch sandwiches, etc. mostly because cost-wise it makes sense. After more than a year, we went back to keeping flour tortillas in the house.

    Even when we would go out to eat...if they brought bread to the table at a restaurant, my husband would not eat it because my daughter couldnt eat it. Even when she would say, "Dad, have some bread already!" I really think it made her feel supported that he did that.
     
  3. slpmom2

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    Thanks for that idea, Kim. Do you have other kids in the house? While my dh and I could make the adjustment, I wonder about how fair it is to ask the non-D, non-celiac sister to take on a gluten-free life when she's already so overshadowed by D in so many other ways. Would love to hear people's experiences with that.
     
  4. mape18

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    My son, who was dx with T1D at 14 months, was dx with celiac just before he turned 5. That was 6 years ago. He is the only one on the GF diet in our house as the food is very expensive. Also, when he was first dianosed much of the food was processed in a plant that manufactured peanuts/tree nuts and my daugher has a peanut/tree nut allergy. The other thing to consider with your other kids is gluten free food is not the most nutritious food - high in carbs, low in fiber. It is not the best diet for a diabetic, let alone anyone else who can tolerate gluten. Instead of having everyone switch to GF, try to eat more fruits, veggies, and meat and cut back on the breads, cookies and crackers.

    I will admit the diet is hard. My son has often said if he could give up either T1D or celiac he would give up the celiac. He just wants to eat what all the other kids eating. However, on the bright side, the GF food made today tastes much better, there is more variety, and it is easier to find in grocery stores and restaurants. Also, if the symptoms are due to gluten just think how much better your child will feel after going on the diet.

    I really hope it is not celiac, but if it is, you just do what you have to do. Stay positive. Your child will adjust and will be okay.
     
  5. AmyJoeBut

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    We go on Friday for an endoscope to see if my little guy has it, but my gut is saying that he does (had 3 positive blood tests.)

    I have no idea how things will actually happen, but my plan is to eat gluten free at home-- mostly because I can't imagine making 2 different dinners every night-- and then if we are out my husband and older son can get what they want. I'll probably try to go cold turkey with my 6 year old because I don't want him to be alone in this like he is with the diabetes.

    But, again, that is just the plan. I have no idea if it will actually work. I'll be just as interested as you are to see how people respond.

    Hang in there!

    Amy
     
  6. Lizzy731

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    Is your daughter tested annually for celiac? It is part of Bethany's routine blood work and the endo said that most likely celiac would be discovered prior to any symptoms because it would show up in the blood work early enough.
     
  7. SandiT

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    We aren't gluten-free right now, because it's me with the intolerance and frankly it was just too hard to try to keep up with everything (I decided I'd rather just deal with the pain and get on with life)... but, that being said:

    We recently made a change that I'm putting everyone through. I tried years ago to go 100% raw vegan, and it turned out terribly for all concerned, lol. However; I still felt like there was something to it.

    Now, I am what I would call "predominantly raw" and it has helped everyone in the family. It's also a way to make being gluten-free much easier.

    We had, for example, kale wraps for breakfast. Kale wrapped around avocado, mango, and dates. Everyone loved it, and my 6 year old dt1 DD could eat it--and did with great gusto.

    I at first thought that going predominantly raw would break the bank, but my typical $200 shopping bill was only $80! And we ended up with too much food!

    So, if you do find that you need to go gluten free, look into going predominantly raw. Still have your communal evening meal with some cooked stuff. And if you're like me and you eat meat (I got very unhealthy without it--not an argument about eating or not eating it here, just giving MY experience and MY reasoning), then have some meat then and use lettuce or other things to make 'burger bites' or the like.

    Eating predominantly raw has a LOT of benefits. You can still have a sandwich or a burger now and then, too. We eat a cooked meal every day, but we have raw mostly, outside of that.

    I think that you'll find it's less expensive and that your little ones will take to it better than you'd expect. Very delicious salads can be made with a variety of ingredients that make it end up rather sweet--and these are very, very nutritious. Plus they are filling, as well, so you're likely to find less insulin need (1 cup of spinach can fill you right up, but it doesn't even make 2 carbs!).

    The problem with a lot of gluten-free diets is that it ends up feeling so expensive. Rice-coated chicken nuggets are more expensive, sure... but when you're only having chicken 1 meal a day instead of 2, and you're having a huge, filling salad with it, you find you'll need less of these expensive things.

    Now, most advocates of a raw diet will say you have to be fully raw, AND vegan, or you won't get the benefits. I found it to be the opposite. That diet made me feel sick, while this one is helping me to feel better.

    At the end of the day, of course, it's all your choice. But for me, going this route has made life easier for everyone. The meals take some preparation, but so does cooking, you know?

    And by the way, it has also helped my daughter to feel more "normal". I made a delicious recipe of raw chocolate balls. She can have THREE, and it's only 15 carbs... and I think that's still a bit of a high estimate (her sugar was quite low after she got treated for 15 carbs after eating them). They are also slower digesting than regular chocolate.

    Point being, you can make delicious food, it costs less, and I think you'd be surprised that your family would be quite happy to eat it. This would be less disruptive to the rest of the family and you'd be bringing IN foods, rather than asking them to GIVE UP foods. For me, that was the biggest deal about going 'predom raw' in my house. I didn't want to hear all the complaints about not getting their favorite foods.

    This is just my personal experience, and it's not intended to tell you what to do. It may not even be relevant because it's me with the problem, not my dt1 6 year old. But she has made the transition with me, and it has been minimal complaining (she would rather eat ham or pepperoni for her between-meal carbless snacks, but I don't really like that, so raw or not, I was set to change that one way or the other :p ).

    And there have been a lot of things about it that she likes (for example, she can have all the chocolate balls she wants for her snack times, where before I was very anti-candy).

    Anyway, I have rambled and blathered and nattered enough at this point.

    Well, one other thing... sorry. :p

    If you do end up with a diagnosis of celiacs, something I've noticed some of my friends don't know is that the same area that digests gluten, also digests iron. So if you get a diagnosis of celiacs, it's not a bad idea to start cooking with cast iron for your DD (but try to keep it to a minimum for men, who do not bleed like we ladies do each month, so for men it can build up in their systems toooo far). Not all of the iron from it is absorbed by your body, but some is, and usually more than you're getting just from normal eating. So it's a "cheaty" way to supplement it slightly.

    Rambling not withstanding, I do desire to wish you all the best, you and your family!!
     
    Last edited: Apr 4, 2013
  8. Meredithsmom

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    Probably not what you want to hear, but I was in complete and utter denial about going gluten free until I had to do it.
     
  9. slpmom2

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    Thanks so much for sharing all your perspectives, everyone. Really appreciate it.

    mape18 - That's what I've heard - that celiac is harder to live with than D. Ugh. Appreciate your encouragement.

    Lizzy731 - Yes, she is tested annually, and that's the one thing that's helping me feel like maybe this isn't celiac - wouldn't they have identified it already? But we'll ask the endo about it today, and see what she says. I'm guessing she'll have us do more bloodwork.

    AmyJoeBut - Sorry you're stuck in a gray zone - hope you're able to figure it out soon and get your son feeling better.

    SandiT - thanks for your ideas. We're already an impossible family to feed (kosher, one vegetarian, one no red meat, and the youngest (with D) is a very particular eater), so it feels like adding one more set of restrictions that aren't absolutely necessary would just be the final straw. But I do like your idea of viewing it as adding options and creativity rather than taking away; will have to keep that in mind.

    Meredithsmom - I totally get it.

    Off to the endo in a few hours. Will report back.
    Thanks, everyone!
     
  10. mape18

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    Sorry to tell you this but my son was complaining of stomach aches. Our endo only tested for celiac every other year. He had been tested 10 months before and was fine but since he was complaining and he was due for his annual labs they added the test in. His numbers were over 100! (need to 4 and under for negative result, I think).

    He went on the diet but he still complained of stomach aches - turned out the stomach aches were from reflux (ugh yet another dx that restricted his diet even more) - not celiac. He would have gone another year before being dx.

    Does anyone else hate food?
     
  11. hawkeyegirl

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    No advice here, but just wanted to let you know that I'm sending positive thoughts your way and hoping that you get good news today. :eek:
     
  12. Lizzy731

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    I have always been worried about celiac every time Bethany complains of a stomach ache or doesn't poop every day until the CDE told me that it should be caught prior to her getting any symptoms. Like her numbers will start to creep up and not be in the negative range. She is tested annually and since her numbers have always been low for the test I don't worry anymore...sorry to be gross but have you taken a look at the color of her stool and if it looks oily and/or floats?
     
  13. Caldercup

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    I freaked myself out reading how "horrible" going GF would be. Seriously, seriously freaked out and sad and depressed and groaning about it.

    It took six months between the initial dx of T1D and the official dx of Celiac. In that time, I read and read and read about handling a GF diet. So when it came time to put it into practice, it wasn't as awful as I'd first thought.

    That said, I am a cook and had already begun cooking everything we ate because we, as a family, had decided to move away from processed foods. So, for me, it wasn't that much of a transition. After about three months, I settled down and found being GF wasn't a big burden.

    I know that's not the common attitude about having to go GF, but my whole family feels that it's not been a bad thing. (And were are almost 4 years in.)
     
  14. kim5798

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    My son who is non-d and not celiac is my no means gluten free. He is 17. he eats plenty of gluten, just not at our dinner table. When I make him a sandwich, it is on whole wheat bread. But our meals do not contain gluten...if we are having pasta, it is gluten free, sauces are all gluten free, etc. The expensive part of gluten free eating is the buying gf processed foods. Eat food that is gluten free naturally. My son has a big box of pop tarts in his bedroom closet, and some other secret stash snacks that are not gf, but they are not in our kitchen cupboard, tempting our celiac daughter.

    I would rather cook one gluten free meal for our family in the evening...than be a short order cook...doing separate meal gf for one person. Very difficult to cook both and keep things from getting contaminated with gluten..utensils, pans, counters, toasters etc. And...I think that mentally, it is better for the kids not to get a separate meal from everyone else. There are already so many issues with food and diabetes, esp with girls. Outside your home, every day, they are different. Home should be a safe place. In our kitchen...our daughter can open the cupboard & eat what is there safely. The only thing she cant is the regular bread and flour tortillas. We always have gluten free bread/buns and corn tortillas for her to sub for that.
     
  15. SandiT

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    Hey, I understand. Just keep in mind that raw food is almost all going to fall into all of those categories: it's kosher, it's vega/tarian which includes no red meat, and it's generally quite a bit fewer carbs, too!

    An example might be a chef's salad with the meat and cheese on the side for the non-vegans to toss on top of theirs. Lots of variety available on the ingredients, and no more work to prepare than cooking at home usually is.

    Something for the back of your mind as you go forward, not intended to make you feel like, "oh no, like GF isn't enough already!" but more as a "you know, if I get too overwhelmed, I can always turn to a chef's salad!"

    I made our family some raw chocolate balls. I thought, "oh boy, how good can they be, seriously?" Since DD isn't allowed much (read barely any) sugar, she was SO HAPPY to get those chocolate balls. And 3 of them was only 15 carbs!

    I can't keep them in the house, though... every one of us mows them like crazy, lol. We each add to them as we like... for example, I confess I roll mine in coconut. :p

    I'm not pushing you to try raw, just want you to be aware that it can be delicious, not too much work, and also can be very freeing because those who eat what others don't, only need ADD to it to be satisfied. If someone's not GF and would like some croutons, they need only add it. If someone else likes meat, they add it. If someone doesn't like tomatoes, those can be on the side, too. The mindset of it is what I want to share, that concept of adding, rather than restricting.

    Going forward, though, try in general to think in terms of "adding". If you make spaghetti, then you can prepare the meatballs on the side. They can be added in by those who do eat them.

    If you make wraps, learn how to make wraps with lettuce, then the ones who can eat the bread can use that on top of it (provided this doesn't create tears for the one who can't).

    There are many delicious ways to prepare foods that are whole and complete on their own, but to which others can add in their own desires. "You know what, if you want meat in your tacos instead of beans, add it." "You want meat on your chef salad? Add it."

    Using raw food or not, it's a good thing to remember. Make things that can be a "baseline" and then give people the option to add to it. It will make your life much simpler, once you get the hang of it. Sure, it might be tough at first, but all change is like that in my experience.
     
    Last edited: Apr 4, 2013
  16. kim5798

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    very good advice.
     
  17. Darryl

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    The symptoms you are seeing could be celiac or completely unrelated. The blood test will give you the answer.

    If you have to go GF, it is NO big deal at all. Almost every food in the supermarket is GF, you just have to avoid a couple of things like wheat-based bread, pasta, cereals, cookies, and soy sauce, and there are plenty of GF subs for those.

    Our family has eaten GF at home since the year that our daughter was dx'd with diabetes, as they did the celiac blood test at that time and so we got both diagnoses concurrently (we repeated the celiac blood tests a few months later just "to be sure"). Have a 100% GF home has not inconvenienced us at all.

    Eating out is a little tricky, but Leah eats at any restaurant that we happen upon, we just talk to the chef and figure out what is GF and get their assurance that they will use clean pans and cooking utensils. This is not a problem at most restaurants, because most all foods are GF. Even at a pizza shop, they always have a nice chicken Caesar salad or something. We avoid only those places where the chef is not available to speak with us.

    Bottom line, celiac or not, you have NOTHING to worry about!
     
  18. slpmom2

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    Thanks. Appreciate the positive thoughts!
     
  19. slpmom2

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    That's my hope - that her regular annual testing having been negative means maybe it's okay. On the other hand, when we met with the endo today she said "that can change at any time." So we tested again today, and should have results in 1-2 weeks. As for your last questions, yes, and no.
     
  20. slpmom2

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    Very encouraging - thank you!
     

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