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Just come to terms with T1D, and now Celiac...how?

Discussion in 'Parents of Children with Type 1' started by Cheetah-cub, Feb 18, 2014.

  1. Cheetah-cub

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    Hello,

    I am new to this forum. But I have been visiting this forum daily for the past 2 weeks or so, read through old threads and collected lots of useful information.

    My 10 year-old was diagnosed with T1D on Dec 4th, and we just got a call from our doctor yesterday that she tested positive for Celiac disease. We had an Endoscopy last week. But we just did not think that she would have celiac, she has no symptoms, and her stomach looked very healthy from her GI exam.

    Can an biopsy be false positive? Or am I just not ready to accept this? We have a doctor appt to discuss this tomorrow.

    Any parents with a T1D child also has Celiac? Food and eating is already so different with T1D, how difficult or easy it is with both? I would say that we are doing well with T1D now (First few weeks were traumatic), and have been living our lives as back to normal as possible. But will life be much more different with Celiac?

    I do enjoy cooking for the family, but we do eat out regularly as well. I don't know much about gluten-free, except that gluten is in wheat, and wheat is in ALOT of things.

    Is there a helpful forum like this for parents with Celiac child? I would appreciate any tips and advices.

    Thanks!
     
  2. KHS22

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    You will survive this! I am celiac - so far my T1D daughter isn't though!

    I'd say its highly unlikely that its a false positive- the tests are very specific to celiac - and we all know the link between T1D and celiac - so very very common.

    If you love to cook, that will be your biggest strength right now, as you are probably more familiar with foods, ingredients etc to be able to make these changes for her. And, eating out gets easier year by year. People are familiar with gluten free, and you learn to chose things that naturally don't have gluten in them.

    There are tons of recipes on line, and the celiac association website lists "celiac friendly" restaurants (at least they used to, haven't visited it in a while).

    Do you get to see a dietician with this diagnosis?
     
  3. twintype1s

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    Hi and welcome! You are not alone here. There are lots of us who have kids with both T1 and celiac. I think about 10% of T1 kids also have celiac. When the celiac diagnosis comes so close to the diabetes diagnosis, it seems overwhelming at first. Your story and timing is similar to ours. My son was diagnosed with diabetes in August, had positive celiac antibodies & had the endoscopy + celiac diagnosis 2 months later. He was also totally asymptomatic.

    I took the celiac diagnosis harder than the diabetes one initially. The hardest thing about celiac is the cost...which you can keep in check if you focus on the fresh fruits and vegetables, meats and dairy...where the cost adds up quickly are buying the GF substitutes for bread pasta, etc. We've been GF for 4.5 years, and the food options, in both grocery stores and while eating out, keep growing--which is a huge positive! There are tons of blogs and other online resources to help point you to recipes, research, safe restaurants.

    The biopsy is considered the gold standard for diagnosis, so if it was positive, she has celiac. When my sons were diagnosed, our hospital set up a session for us with a dietitian that was a helpful jumping-off point. Then I did a ton of research, and had a fair amount of trial & error in my cooking at the beginning. It's an adjustment, but easily doable. I don't think about it much anymore and can adapt most recipes to fit our needs. You'll need to make a decision on whether you want the whole household to go GF or just your daughter, and if it's just your daughter, figure out a way to minimize the cross-contamination. I'd say 95% of the dinners I prepare are GF, but my husband, daughter and I still have gluten at other times. Feel free to PM me if you want more info on anything!
     
  4. Snowflake

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    Good luck! Our DD was dx-ed celiac about 20 months after her T1 diagnosis. The first month of going GF was incredibly challenging and stressful for our family, but things are finally starting to make a little sense. Our two biggest challenges were de-glutening our kitchen (I took a day off work for that) and learning GF carb counts. I did feel fortunate that we got the diagnosis right as strengthened GF labeling laws have begun taking hold; grocery shopping has not been nearly as difficult as I expected it would be.

    I have to admit, I didn't have a great attitude about this when we received her celiac diagnosis, but we have seen a major improvement in our ability to control her diabetes as her gut has healed. We spent all of last fall fighting crazy lows that were most likely caused by gluten-related malabsorption, and those came to an end within a few weeks of starting the GF diet.

    You asked about whether there's a site like CWD for celiac families. I'm sure there are others, but the website celiac.com has a pretty good/active forum for parents of children with celiac disease. And of course, there's also the Celiac group in the "special interest" area of this website. I read most of the archive when we got the celiac diagnosis, because as far as I can tell, it's one of the only places on the Internet that discusses managing both diseases in children.
     
  5. Cheetah-cub

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    Okay, I will not insult the doctors tomorrow by telling them that their test is wrong then.

    I sort of remember the doctor mentioning a dietician when she called yesterday, so I think we will be meeting with a dietician. When she called I was in a state of shock and I don't remember anything else. We already met with a dietician when we were diagnosed with T1 in December, at that time, we were learning all about the carbs.

    Thank you all for your reassuring replies, and thanks for the tip about the Celiac group in the "special interest" area of this website. I had not looked down that far.

    I feel better today. We will accept celiac into our lives (not that it will budge), and I think we will learn to get along with it too.

    I already made my first gluten-free dinner tonight. (I went shopping today, and yes, there are a lot of gluten free choices out there, but pricy.) I made salmon, green beans, and white rice. I marinated the salmon in orange juice that I squeezed out of 1 orange and gluten free Teriyaki sauce, and some salt. They were very yummy. We declared our first gluten free dinner a success.

    My 10-year-old is looking forward to her new gluten-free cereal tomorrow morning.

    Thanks again!
     
  6. sincity2003

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    First, I'm sorry you got a double whammy so close together. My DS was diagnosed last January and at our appointment 2 weeks ago, we were told that his bloodwork has indicated he might have Celiac's Disease. We were not referred to a GI doctor at that appointment, but we were told to monitor him and report back on certain things in 30 days. Based on the information I've now researched and patterns I've put together, I'm fairly certain he has it as well.

    I posted a thread in the Celiac forum and Snowflake posted some really good links (thank you, again!). I've also gone on Pinterest and searched "gluten free" and found a lot of recipes and helpul websites that way.

    And your dinner sounds yummy :) Remember, most of the Chex cereals are Gluten Free, as well as Rice Krispies, and those usually aren't as pricey as the "Gluten Free" section of the grocery store :)
     
  7. Nicole N

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    Hi,
    My son was diagnosed with T1D 2 years ago this May. His blood work came back positive for Celiac in the summer. We went to a children's GI specialist. He did blood work too and it came back positive. We had a follow-up appt with him 6 months later; blood work came back positive. He has not had the endoscopy. My son is asymptomatic. After lengthy discussions with the GI dr., he recommended not making diet changes since he was asymptomatic. We will follow up with him in 6 months. Science does not know all there is to know about this disease (Celiac) and there are different schools of thought.
     
  8. Annapolis Mom

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    Good luck with your new diagnosis. My daughter was diagnosed with celiac nearly three years ago. Like anything, you get used to it, but it is challenging. Eating out is hard when you're concerned about contamination and spending long periods of time with friends can be tricky (although we send her with food whenever possible).

    I do want to point out that regular Rice Krispies are not gluten free. They make a special kind that is labeled gluten free.

    I'm glad to hear that your first meal was a success. I found it helpful to make a list of all the foods that my daughter eats that are gluten free. It is comforting to see what a very long list it is.
     
  9. sincity2003

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    I apologize for giving out wrong info. I just remember being in the grocery store and seeing the Rice Krispies' box saying Gluten Free. We don't eat them here, so I wasn't aware there were two different ones :(
     
  10. andiej

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    Hi Just wanted to say welcome to the boards. My son is also 10 and was diagnosed on 24/12 so far no Celiac diagnosis but totally feel for you. The thing my son hates the most about diabetes is the eating structure, I think he'd really struggle with a celiac diagnosis so soon after the diabetes dx. Good luck :)
     
  11. Cheetah-cub

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    Thanks, everybody!

    We had our doctor appt today. My baby has Celiac. We are joining the ranks of gluten-free. I asked them how obsessive we have to be about cross contamination, they told me to be very anal.

    I am actually very stressed out right now, we are going up to Lake Tahoe tomorrow to go snowboarding (booked before this celiac business), and it just hit me that I have no idea how it is going to work out with the resort's limited restaurants. I already bought some gluten-free breads, but I have no idea if she will eat them. I have a very picky eater.

    When I get back, I will need to de-gluten our kitchen. Anyone has any special tips to de-gluten a kitchen? please share. For now, I image alot of tossing out stuff and cleaning with lots of muscle.
     
  12. SarahKelly

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    I am sorry for the double diagnosis, it isn't easy. I will admit that for our family the celiac diagnosis was more difficult, however because my son was very uncomfortable due to celiac disease the answer to his pains were very welcome.
    Once we figured out which brands or GF alternatives our family liked things have gotten easier. There is a lot of trial and error at first, but it gets easier. As for eating out that has been tricky for us only because we have children with very different food preferances so finding a place that offers gluten free food that is prepared in a safe way and fits both of our kids likes is difficult. We have instead found many incredible new recipes and enjoyed admitting together when recipies are major flops.
    Also, we decided early on to have our entire family eat gluten free when at home, it has been the best decision for our family, but it did take a bit of prep work. We did a full house cleaning of all things gluten (who knew it was hiding in so many lotions, chapsticks, and even some shampoo!!!) and we are all fine with what we decided 6 months later.
    Our favorite cookbooks have been Gluten free Girl, Glutenfree on a Shoestring, and Cooking for Isaiah. There is a ton to find online for recipes, too and I love that others have already tested them for me and are usually very honest about how they turn out :)
     
  13. Snowflake

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    Good luck with travel!

    We got our DD's official diagnosis over the phone on the way to a Christmas trip to a Colorado mountain resort. I was also stressed about eating out GF starting on the day of diagnosis. Fortunately, we had my mom (an adult-diagnosed celiac) in tow, and she helped us navigate ordering for that 3-day trip. Hopefully, restaurants in a destination like Tahoe with people traveling from all over, and especially all over the West Coast, will be familiar with GF.

    I'm still figuring out how to interrogate waiters, so for now, we don't eat out as much (which defrays some of the larger grocery bill), and when we do we try to order my DD really stripped-down food -- things like grilled chicken breasts and plain rice. It probably wouldn't be exciting enough food for me, but it works for her.

    I sympathize with having a picky eater who is double diagnosed. My daughter is EXTREMELY picky. When we got the call, I was worried that she would never eat anything other than cheese again. The good news, though, is that her appetite roared to life after diagnosis. I think she'd felt crummy for a long time and hadn't been able to articulate it. Once her stomach started healing, she started wanting to eat again (within a week or so, I'd say). She hasn't expanded the range of very basic foods that she likes, but she has started eating a normal amount of food for her age.
     
  14. SarahKelly

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    The one area that surprised us that had more gluten in it than we thought was our bathroom - shampoos, lotions and even a few types of hand soaps. So...remember to just read read read.

    This is doable though and eventually all will be second nature and your dauther will feel even better, despite being asymptomatic you might be surprised at how her energy level increases and things just seem a bit more smooth.
    Enjoy your trip ;)
     
  15. Cheetah-cub

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    We survived our snowboarding trip.

    I did one heck of a job interrogating our poor waiters. My baby was feed 3 proper meals a day, and her blood sugars were mostly in range during the trip.

    But because my daughter has no celiac symptoms. We don't really know if and when she eats contaminated food.

    We googled and found a Gluten test kit called EZ Gluten. It is a test strip that supposedly can detect levels of gluten as low as 10 ppm. We want to buy this kit. Has anyone tried this product? Or know of other product that works? Here is the website to EZ Gluten: http://www.ezgluten.com/

    Thanks.
     
  16. Sarah Maddie's Mom

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    As an adult who has celiac, I wouldn't consider whipping out a science lab at a restaurant table. I can't imagine it would be emotionally healthy to have a child sit at the table, once their food has been served, and wait while mom and dad undertake the chemical analysis to determine cross contamination.

    It's hard in the beginning, but it does get easier. :cwds: I just ordered the "America's test kitchen" first ever GF cookbook. I haven't even seen it and I'm going to recommend it because it's ATK and full of comfort type basics http://www.amazon.com/The-How-Gluten-Free-Cookbook/dp/1936493616. Also, if your store has a large Passover section then go check that out. There's bound to be a FG section - not sure when GF passover became such a big deal but it's a large section in our Stop and Shop, our store has these things at slight discount now but they will be deeply discounted right after the holiday so you can stock up on anything that your kid especially liked.
     
  17. SarahKelly

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    I asked Isaac's GI doc about that and he didn't put much stock in it.
    Also, when discussing it with Isaac he just wants to go places that he knows are safe based on the experience of others with CD. I have noticed whenever I suggest a place he says, "has Ryder eaten there? Megan? Kirran? Nana?" He goes through a list of others that he knows and if I say no than he asks if we can go somewhere he knows, but he has symptoms very quickly to gluten contamination or gluten foods. He is definitely not going to "test" something that hasn't previously been put through the ringer so to speak.
    I know that around here (Seattle Tacoma area) there are endless websites that give recommendations and it's pretty obvious when you call ahead which places know what they're talking about and which do not. Also, if they aren't willing to discuss how their food is prepped or their ingredients I feel that it isn't a place we should be eating at anyhow.
    Now 6 months post diagnosis we've found a great amount of variety and are really enjoying finding new recipes to try at home, too.
    Glad your snowboarding trip went well, bravo to you guys :)
     
  18. Caldercup

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    So sorry you've been hit with the double-whammy! (Been there, survived it)

    My son was totally asymptomatic but was clearly a Celiac from the bloodwork and the biopsy.

    After a month or so of our being totally GF, the tiniest bit of gluten now makes him very sick. And, surprise, I discovered I was also an asymptomatic Celiac. Now, if I get cross-contaminated, I get awful gastric distress and then intestinal cramps for a few days.

    You'll get through it and learn what works for your family. (In our case, my husband still consumes gluten, but my son and I are GF. We treat the house as GF and my husband has to be incredibly careful with crumbs and stuff. I bought a new toaster for my son and me, but my husband uses our old toaster... that sort of thing.)
     

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