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Type 1 Diabetes & Celiac

Cam's Mom

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Cam's Mom Contributor
Cam's Mom
Posted

Hi! I am new to the board. my daughter who is 6 was diagnosed with Tye 1 diabetes in march 06 and screened for celiac. Although her ttg was a wopping 181 the docs. neglected to read the labs. She was tremendously ill with stomach aches, vomitting, etc. for 6 weeks until I asked for a celiac panel. They responded that one would have been done when she was diagnosed with diabetes which is when it occured to them that they never got the results. So, now she has been scoped and confirmed.

We started a gluten-free diet about three weeks ago. She still occasionally says she has stomach aches. her blood sugars immediately rose (as was expected) but have now dropped again.

I am looking for feedback from anyone with both issues - could her intestines just still be healing or perhaps we are not as gluten free as we think we are? Also, I am trying to get her on a pump but am concerned that we can not get the sugar levels under control.

Would love to have feedback on any of these issues. thanks!

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ehrin Explorer
ehrin
Posted

Hi Cam's Mom -

I have both T1 diabetes (dxed 2/80) and celiac disease (dxed 10/05) and have also worn a pump for the past 4 years. Since your daughter started the gluten-free diet only 3 weeks ago her intestines are definitely still healing. You may, since you are still so new to this, have yet to figure out all the items that may have gluten in them. Have you checked your soaps, toothpastes, shampoos/conditioners...do you use teflon pots that are older and scratched that could be hiding gluten? Are you using the same wooden spoons as before? Gluten can hide in that wood! My blood sugars definitely crept up after starting the gluten-free diet. Many of the gluten-free foods, that are prepackaged, are very high in simple carbs and are packed with fat/calories. I have found that sticking to a low GI (glycemic index) diet has kept my blood sugars in check - my last A1c was 6.1.

As for starting your daughter on the pump - I'd HIGHLY recommend it. I WISH I had the convenience of a pump at her age, and especially through my teen years...once you learn all the mechanics it becomes second nature and you'll wonder how you lived on MDI. The control is amazing and actually my last A1c was the highest I've had in the 4 years since going on the pump. A1c's are typically around 5.5!!! I cannot stress how much I love my pump. Your endo may even give you one to try if you'd like to see if your daughter will accept it. I did a saline run prior to purchasing one.

If you have any questions please feel free to ask!

Ehrin

2kids4me Contributor
2kids4me
Posted

HI! my son was diagnosed with diabetes at the age of 9 yrs and 10 months later with celiac. (Sept 2003 diabetes, July 2004 celiac)

He took about 6 - 8 weeks if I recall - for his symptoms to go away. He had leg pains and mild stomach aches. His sister is also celiac and she had way worse stomach aches prior to gluten-free, yet my son's intestine showed way more damage.

It is hard because any illness /stress can affect the blood sugars... and there is loads of stress during the adjustment period to diabetes or celiac - and you and your daughter have BOTH to adjust to.

My son is not on the pump (personal choice for him). The Childrens hospital where I take my son prefers that they have been diagnosed 1 year with diabetes and demonstrated they are reliable with blood testing.

We recently started him on Glargine (Lantus) and that has helped smooth out some swings in BG that we were seeing.

How are you and your daughter doing with all of this?...my son seemed all gung ho to do everything himself and was very accepting of it all for about 2 months, then we had a "crash and burn" day where he burst into tears when he saw the syringe and said he wished the stupid needle could be smashed to a million pieces... and then he asked if he could just not take it. I hugged him and was expecting this cause I was told this will happen from time to to time and he needs a "soft place to land". I agreed that this was royal pain (I have diabetes too)... we promptly mada dart board out of cork board and he could take that silly needle and slam it into the cork! He has now made his own dart board with his own design on paper and he takes out his frustration that way.... course he IS a boy. It has helped him cause when the needle stings or hurts (it usually doesnt)..he now gets an annoyed look and states "This is definitely a dartboard needle". Much better than internal anger and refusal to take it.

I use the dart board from time to time myself!

Things will get better... do you have a "diabetes team" helping you? (nurse, dietician, endocrinologist). Ask them if there is another child with diabetes /celiac who's mom might be a local support as well. Nothing like having a cup of coffee with someone who understands the ups and downs, and why you have to have meals on time ...etc....

Tony'sMom Rookie
Tony'sMom
Posted

Hello and welcome :)

My son was diagnosed with Type 1 diabetes at age 1 year. When he was 3 he was diagnosed with celiac disease. It took about 6 weeks or so before most of the symptoms went away. I found that the better we were with the diet, the better the blood sugars were.

My son has been pumping now for almost 3 years and we love it. His control is much better and it gives us more flexability as far as meal time goes.

Cam's Mom Contributor
Cam's Mom
Posted
  • Author

Thank you all for the feedback and support. It has been pretty rough and our son (who is our daughter's twin) is being tested next week for diabetes and celiac. We are hoping for mercy and that he was dealt a better genetic card than she was. The good news is that he is always there for her and looks out for her, makes sure her sugar numbers are good and that she gets the right things to eat - and they are only 6. Thank goodness for that!

Any other info from those of you dealing with both diabetes and celiac (i.e., favorite snacks, carb counting, etc.) please pass it along!!

Thanks again!

Guest Lucy
Guest Lucy
Posted

My son was diagnosed with diabetes about 2 years ago, at the age of 2, then 6 months later with celiac. He had NOOOO symptoms, so I can't help you there, but, he is pumping for about 7 months now, and we LOVE it. The PUMP is sooooo awesome. We were doing humolog with lantus and we had such huge dips it wasn't even funny. We still have some highs, when the pump has air in the line or at the end of the 3 days, but NEVER have had a low. Maybe a 50 now and then, but we went as low as 28 before the pump. A 50 is maybe 1 time every month. I feel so much safer. Also with the eating restrictions you get with celiac, at least on the pump he can eat more often, and can be a little more "normal" that way.

We are on the mini-med pump. I would love to chat more about it if you have any questions.

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    • Scott Adams
      Disregarded

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      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
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