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ljgs

Terrified Of Diabetes

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My 15-year-old daughter was diagnosed with celiac disease two years ago this week. She has been extremely compliant with the diet and her antibody levels quickly normalized. But I remain terrified that she will develop Type 1 diabetes. Every time I hear about someone developing this disease, I worry all over again. There is a lot of talk about diabetic children developing celiac disease, but not as much known about celiac children developing diabetes. Can anyone offer any consolation or advice? Chances of developing Type 1 diabetes? Thank you.

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My 15-year-old daughter was diagnosed with celiac disease two years ago this week. She has been extremely compliant with the diet and her antibody levels quickly normalized. But I remain terrified that she will develop Type 1 diabetes. Every time I hear about someone developing this disease, I worry all over again. There is a lot of talk about diabetic children developing celiac disease, but not as much known about celiac children developing diabetes. Can anyone offer any consolation or advice? Chances of developing Type 1 diabetes? Thank you.

ljgs, I can understand the worry. My DS teases me when I worry about him getting diabetes.

First, has anyone in the family had Type I? I assume that she doesn't have any Type I symptoms (or else you'd be at the doctor's instead of here).

Second, have you had her genes tested? DQ2.5 is the most highly linked gene to Type I diabetes, particularly in males. So if you have her gene tested, you'll know if she really is at higher risk. See this wikipedia article: http://en.wikipedia.org/wiki/HLA-DQ2

Third, I'm not an expert but I think that it's usually the Type I that is found first, then the test for celiac is done. Type I can happen later in childhood - even into adulthood like my grandfather who got Type I at age 40 - but I don't think your daughter has a super high risk just because of celiac. So try not to worry too much.

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I have the same exact fear! Every time my 2 year old asks for water, I start worrying that it could be the thirsty symptom of diabetes. I'll be so grateful if she only ends up dealing with celiac in her life.

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I agree that it would be good to know her genes. DS has DQ 2.5, and so I'm more concerned about it in his future because of the correlation. However, I'm more concerned about getting our soon to be born baby tested because I just learned that I'm DQ8 positive, which means this kiddo may well end up DQ8/DQ2.5 heterozygous, which seriously increases the risk for both Celiac and Type 1 even higher. It's very worrisome. I guess all you can do is know that your daughter is doing her best, and at this age, is old enough to understand the lifelong consequences if she doesn't stick with the diet.

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My husband was diagnosed with type 1 when he was 9. Other than the fact that I highly suspect he has celiac and have just gotten him to go gluten free with me he is in perfect health 20 years later. My niece is 10 (I think) and was diagnosed with type 1 when she was 5. They gave her a pump so she doesn't have to mess around with syringes or anything and she carries around a tiny backpack everywhere she goes. It has a book for carb counting, snacks in case she gets low and her other supplies. Other than that there is nothing that makes her any different than any other kid. She tries to get out of doing the dishes, adores her daddy, is 90% adorable and 110% obnoxious. Other than the 2 minutes before she starts to eat that she estimates her carbs and punches a number into her pump there is nothing that makes her any different.

I know that diabetes is scary. It really can be. But really, it isn't the most awful thing in the world. I mean, is it really the end of the world if you have to take 30 seconds to stop and really THINK about what you are putting in your mouth before you do it? Sure it's a nuisance, but it isn't the end of the world. I think it's more a point of view thing. If you stop seeing it as a worst case scenario it may help you to stop worrying so much.

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I seriously almost made a post about this same topic. Yes, I obsess over it. My husband is type 1 and my daughter has his exact genes (Dq2 and Dq8) He got it his first year in college and she will be 12 this month. I have researched my brains out and will tell you what I have found.

1)There is a trial study going on if you would be interested. You can go to a participating provider to have the blood drawn or they will send you a home kit. Free. However...it will tell you if your child has the antibodies that may develop into type 1. I have read to NOT do this unless you would enroll her in a clinical trial or else you would be driving yourself crazy knowing that within 5-8 years, she would most likely get it. My dd endocrinologist at Vanderbilt wanted her in it. I made the appointment and then canceled it. The trial going on near me is a trial of oral insulin. It has shown some prevention in lab rats but not much in humans so we chose to not do it or have the test. They will test for antibodies and NOT put her in the trial if that is what you want. 95% of the blood will show no increase risk. Here is the link...

www.diabetestrialnet.org/

2)Please google info on prevention and use of Vitamin D pills. There are youtube videos on it. They are doing a study in Canada and Finland (I think) and have seen promise. It must be 1000 mg. a day. (gluten free of course!) This was something I felt comfortable doing so every morning both my girls get a vitamin D pill. Please read about that. It may or may not prevent it but I can say I tried.

3) I also have prayed over my girls. This will be what does the most good. I have gone in their rooms while they were asleep and begged God to spare them of it. I know we don't always get our prayers answered but this will continue until they get it or over 40.

4) My husband of all people thinks it is not that big of a deal even if she does. Like the above poster, he has the pump and programs in carb counts. It is not like the diabetes of old. He eats ANYTHING and EVERYTHING he wants...he just has to get the carbs right. NOW...he has not faced the bad effects of it. No eyesight problems, kidney problems, circulation problems, etc yet (20 years) and so it hasnt' really hit him that its that bad yet. He thinks the celiac diet is way harder to follow. However, she's my baby and I will always worry.

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1974girl, thanks for the info. Do they take kids over 18? I couldn't figure it out from the trial site. I'm going to have my DS do it if they'll take him. He's going to be a doctor, so it should be interesting for him anyway. Thanks for the info on Vit D. We supplemented that for years because I read a PubMed study that said Vit A and D supplementation was as effective as hormones for growth-delayed pre-pubescent males.

Adelaide, I can understand the other posters' concerns about DMT1. Just because your guy is ok, doesn't mean it's not a bad disease. Celiac pales in comparison, and Type 1 is a risk for longevity and quality of life. Celiac may be harder to deal with on a annoyance basis but I'd take it over Type 1 any day.

That said, I think worrying too much isn't good either which is why I do a lot of research. And praying, like 1974girl - I agree they'll always be my babies. My son is away at college during the year, and before I go to bed at night, I picture a cone of light enveloping his dorm room and pray for health (and I pray for his room-mates' health and my DD in her bed at college too)envisioning peace and contentment and freedom from illness.

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I have been type one for almost forty years, and was diagnosed with celiac disease five years ago. I now believe that had I been diagnosed with the celiac first, the diabetes may never have been triggered. Type one diabetes begins when the islet cells in the pancreas are destroyed by antibodies recruited by the immune system. I often think that those antibodies were likely triggered by gluten, which I was unknowingly eating freely back then. So in other words, if you get the celiac diagnosis first, you are a lucky one, and can begin the process of completely eliminating a dangerous antibody trigger that can set off all kinds of things: diabetes, RA, Hashimoto's thyroiditis, psoriasis, etc. And anyway, it's true -- if type one does rear its head at some point, it is absolutely NOT the end of the world. Believe me, there are much worse diseases to have. I eat the best diet in the world, I am forced to exercise and keep stress minimized.......yes, a pain sometimes, but I feel great. :)

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1974girl, thanks for the info. Do they take kids over 18? I couldn't figure it out from the trial site.

From the way I read it, anyone can be screened once but only under 18 can be retested every year to see if their risk has changed. In other words, if your son is 18 and doesn't have the antibodies, then he is probably safe. Not going to happen in the next 5-8 years. It is rare for the over 24 crowd although it can happen!

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As a diabetic myself I can say there is no reason to be terrified of it. Type 1 is thought to be brought on by a virus. What virus? I don't know. Just like we don't know for sure what causes celiac.

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That's what they told my dh in 1992. He got it within a few months on his college booster shots. Always wondered if that triggered it. Some shots have live viruses in them.

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It certainly is good to know I'm not alone!!! While I do my best not to worry about things that are unlikely or largely out of my control, when I hear about someone being diagnosed, I do worry about my daughter. She has the DQ2.5 gene, but then again almost all celiacs do. And her father has both DQ2.5 AND DQ8 and is neither celiac or diabetic. So the odds are good she'll be fine. Thank you all!!!

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Just wanted to let you know... my daughter was dx'd with T1 Diabetes in 2007 at the age of 4 and Celiac in 2008 at age 5. She is 9 now (10 in November) and the Celiac diagnosis was actually the harder of the 2 for her to adjust to. When Diabetes hit it was scary but with modern medicine it is a lot easier to manage it these days. She was still allowed to eat the same things as everyone else, we just had to count the carbs and of course you are extra vigilant in day to day activities to avoid lows etc. But with Celiac she suddenly couldn't partake in birthday treats, eat out at any old restaurant, enjoy her favorite cereals/breads and on and on. Of course everyone is different but just wanted to give you another perspective. :) Good luck.

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