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Just when it seemed it couldn't get worse we may have just dropped to a whole new low

Discussion in 'Parents of Children with Type 1' started by kail, Jan 29, 2015.

  1. kail

    kail Approved members

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    I know there are many on here who deal with this but I absolutely can not get my brain around how we are supposed to manage type 1 D and celiac disease in a 4 year old. I am completely freaked out. We just had our visit with endo and had labs done. I was expecting a nasty A1C after a rocky ride for the past 3-4 months as we seemed to be bouncing out of honeymoon after a couple of illnesses. It wasn't even as bad as I thought it would be but I was shocked to find out her celiac test was sky high. The confirmation is not back yet. I spoke briefly with the doctor who told me that he has had a couple of tests come back lately that he questioned and he wanted to hold off changing anything yet but repeat the test in a couple weeks with the test sent also to another lab. So now I am in a horrible waiting pattern. I have a hard time believing it would come back negative on the repeat so I am guessing we are going to have to deal with this. Today has been a horror where I am torn between giving her food she loves knowing she may never get to eat it again and feeling like I am giving her poison. I honestly have no idea how we are going to do this. Its not like she eats bread all the time but there are so many foods we do rely on and she is a picky 4 year old. At least with T1D she could still eat foods she loved even if most of her meals were balanced and healthy. I am awe of those of you already coping with this because I honestly don't see how we are going to get through this.
     
  2. SarahKelly

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    Not one to say which is a "worse" diagnosis, however for our family finding out that my son had celiac disease was definitely more difficult for the first few weeks. His numbers were sky high and sadly I knew that blood tests were right. Despite any additional testing that was needed the answers to his crazy numbers, his headaches, dry skin, belly issues...it was all there. Isaac was diagnosed with t1d at such a young age that the carb counts for his foods grew along with him, all of the ups and downs just went with it - it wasn't easy but we managed. Celiac disease was a much bigger bump to just wrap my head around. HOWEVER, that said within a few months of Isaac being on the gluten free diet his numbers started making more sense, the reason we weren't able to dose accurately for many foods (because they weren't being absorbed) stopped being an issue and we got into the new rhythm. Actually, the diet isn't awful...I am being 100% honest. We're now over 17 months into a GF diet and nobody in our family feels denied when it comes to eating well. You will be frustated about it just like with diabetes at times, but it does start to be old hat - it starts to be so familiar that when others mention certain gluten-filled foods that your child may have eaten before you'll realize that you don't even miss it, or even better you've found an even more awesome answer. The cost seems horrible at first, too - but then at least for us, we realized how much less times we just buy random food while out and about and in the end I think we've broken even financially with having to be GF.
    So, it is really rough right now...I know. But it will get better. Start with a list of favorite meals that have not gluten, enjoy those :) Then look at your recipes or family go to meals that are gluten-ful and see how you can change them either by getting rid of grains all together or by using the yummy GF alternatives that are available. If ever you have specific questions about brands, favorites, or recipes send me a note and I'd be happy to help :)
     
  3. Cheetah-cub

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    Well said. I totally agree with Sarah.

    My daughter was diagnosed with celiac just 2-3 months after our T1D diagnosis. It was very overwhelming at first. But we got over it. My whole family eats GF now to avoid cross contamination. Like Sarah said, we don't feel missed out on our old food, not at all. We found lots of new foods, and new recipes that we like, and we continue to enjoy eating.

    There is a definitely a learning curve in the beginning. Just learning what to avoid, and what is safe to eat, and also finding out which GF foods/brands tasted good to us. We have found some really great GF foods!

    Eating out, travel will require more research, and play dates, kids parties will require more planning. But it all works out.

    We are strict with our daughter's GF diet, but we don't find it very difficult. We still go out to eat, we just have an entirely new set of restaurants that we frequent than before.

    If your blood test show celiac, you will still need to schedule an endoscopy to confirm it. Maybe she does not have celiac, but if she does, it will be okay too.
     
  4. wm8

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    kail, I hope your test results come back negative.
    Cheetah-cub, did your daughter get a Celiac test during diagnosis? 3-months after diagnosis seems to be a rapid change if she was negative at diagnosis.
     
  5. Nancy in VA

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    I agree with the others. It is hard at first but it gets better. My daughter was diagnosed about 2 weeks before her 5th birthday and her Dr basically said "well, you need to find something gluten-free for her birthday". That just sucked.

    We are almost 5 years in and it does get better. We've had stressful times when we weren't in control of where and when we ate that made us struggle with her food. We are smarter now and if we think we'll be in any position where food may be an issue, we carry a number of gluten-free snack bars with us so at least she won't go hungry. There are gluten-free alternatives to most foods - I know at 4 years old that its all about "replacement products" for her favorites. We don't eat gluten-free as a family, necessarily, but a lot of our dishes are casseroles or crock-pots so in those cases, by definition, we all eat gluten-free. Other times, she has hers separate from ours (like last night, I made baked macaroni and cheese, so she had her small casserole dish of mac and cheese and the rest of us had our large one. I had made one big pot of cheese sauce and two separate pots of pasta and just poured some over hers and then the rest over ours.

    It does get easier. But definitely be vigilant. Lots of restaurants have menus online now so you can research before you go somewhere. You'll find good products to use at home. We eat at home now a lot more than out - not because of GF because of budgets, but for the most part when we go out, we typically eat at chain restaurants where we know there will be more options because most "mom and pops" don't have as many options for eating GF. It helps that its "cool" now to be gluten-free - that makes restaurants more aware and food manufacturers more interested in making GF foods.
     
  6. Snowflake

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    More reassurance here. My dd was dx-ed T1 at age 2, and celiac just before turning 4. It was not an easy adjustment, and I was not super-enthusiastic about it, maybe especially because I have several celiac relatives who were diagnosed at an older age and felt very deprived adjusting to the GF diet. However, the silver lining to diagnosis at a very young age is that GF foods become the child's normal, and, at least in our experience which might not be universal, it's been relatively easy to socialize our daughter to GF. As long as she's not excluded from snacks and celebrations, she doesn't seem to want the food that other kids have, and she has found GF treats that she really enjoys.

    For us, her T1 management improved markedly after going GF, which neither the endo nor GI had prepared us for. Before diagnosis, we experienced weeks of awful lows that would arrive unpredictably and that would not respond to multiple low treatments over several hours. Once she went GF and her gut healed, the stubborn lows resolved within a few weeks. Her A1C also improved, I think because we were no longer yo-yo-ing between stubborn lows and next-day highs. Realizing that the GF diet "cured" this weird manifestation of celiac made all the effort so, so worthwhile.

    Lastly, I sympathize with your feelings about giving your daughter food she loves while also worrying that it might be "poison." I felt the exact same way in the six weeks or so while we waited for definitive diagnosis. But our docs were clear that our daughter needed to keep ingesting gluten during the diagnosis period so that we could trust the antibody tests and endoscopy results. If you go GF immediately, the follow-up tests could be inconclusive.

    Good luck!! Let us know how things develop with the next test.
     
  7. Cheetah-cub

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    We believe that she was tested for celiac at our initial diagnosis, and they knew that she tested positive, but decided to hold that back from us to deal with the initial shock of T1D first.

    On one of our follow up appt, our endo told us that our daughter tested positive AGAIN for Celiac, and the TTG was very high, and she was quite certain that she has celiac too. We didn't believe it at first, because our daughter suffered no symptoms, but the endoscopy confirmed the damaged to her intestine.

    Dealing with T1D and Celiac within 2 or 3 months of each other was no fun! But it was still very good of them to give us some time before introducing us to Celiac.
     
  8. SarahKelly

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    BTW we did not do an endoscopy for Isaac his numbers were over 700 and he was symptomatic, instead we chose to pay for genetic testing that came back positive. So, you don't necessarily have to do the endoscopy for CD diagnosis these days :)
     

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