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Hello All,

Sorry it has taken me so long to summarize the responses to my post inquiring about any of your experiences with having celiac disease and type 1 diabetes together.

I would first like to express my great appreciation to ALL of the people who responded to me with thoughtful, helpful and comforting responses.
I will cut and paste my original query at the end of my summary in case any of you missed it and want to review.

More than 40+ people from this list responded that they, or their child had celiac disease and type 1 diabetes BOTH.  Plus, many more also had Hashimoto's like my daughter does.Some of you had diabetes first and then were diagnosed with celiac disease and some the other way around.I am learning that once a person has one autoimmune disease it is not uncommon to have one or two more autoimmune issues as well.

In my original query, I asked if it was possible that my daughter had high blood sugar as a result of eating a high carbohydrate, high glycemic gluten free diet.  Most of the responses I received were that my daughter's pancreas should keep up with the carbs and produce enough insulin to keep her blood sugar normal in spite of her diet.

After testing my daughter's blood sugar for one week, she had fasting sugar levels of anywhere from 64-112 and postprandial sugar levels of 151-250.  She was only over 200 twice in the week. Interestingly enough, I made a point of having her eat two meals that had NO rice products or GF bread, only meat and vegetables.  After those two meals, her post prandial sugar levels were 76 and 106.  So, it seems as though eating foods that are high on the glycemic index truly does affect my daughter's blood sugar level.  Not sure what that means but it gives me some hope as to the ability to control her blood sugar without insulin.  Our dr. was encouraged by those results.

After the week of testing at home, we went back to the pediatric endo dr. to discuss what we will have to do for my daughter going forward.  He had run some additional blood panels for diabetes including Glucose, Islet Cell AB Screen, Insulin Antibodies and Glutamic Acid Decarboxylase.  All were normal except the last test.  Her GAD 65 antibody was 7.7.  Normal is less than 1.  Her A1c also was 6.2.

My daughter's dr. indicated that Allison is pre-diabetic.  Since she is going off to college in two days, he referred us to a colleague in San Diego where she will be going to school.  We have an appointment in 3 weeks to get his opinion and find out what Allison will need to do to monitor her blood sugar or what else she should be doing at this point.I have read that in some cases, patients, especially siblings of diabetics have been put on insulin when they are pre diabetic before the onset of diabetes as a way to postpone onset.  I don't know what the visit with the new dr. will bring but I would welcome any input from this list based on my daughter's numbers and situation.

I am very concerned about sending my daughter off to college trying to navigate the GF diet AND trying to control her carbs AND being tempted with drinking etc. Her body is not in the best condition for the eating and drinking experiences of Freshman year in college.

Again, I would like to thank everyone for the thoughtful responses.  You all made it seem as though diabetes is not a life sentence and very doable for my daughter.  She can have a very active normal life with diabetes.
I will follow up again on this list after we have the final decision with the new dr. in September.

Thank you SO much again to everyone!

Beth
El Dorado Hills, CA

Here is my original post:

Hello All,

I am writing to hopefully make contact with any of you list members who may have first hand experience or good knowledge of having Celiac Disease and Type 1 diabetes together.  

My 18 year old daughter Allison, has had Celiac disease for 13 years.  She has been relatively healthy, although very thin, most of her life.  She sees a pediatric Endocrinologist on a regular basis.  Allison was additionally diagnosed with Hashimoto's 2 years ago.So, Celiac Disease, then Thyroid condition.  No surprise there.

Fast forward to this week...Allison's Endo dr. ordered a bunch of blood tests for her to make sure she was healthy before she went away to college in three weeks.  Mostly to test her thyroid and do a celiac panel but he decided to also run a comprehensive metabolic panel.  The blood work showed that Allison had a blood sugar level of 182.Her dr. was very concerned and did a couple of other finger pricks and blood tests in his office.  He then sent us home with a blood sugar test kit to test her blood before each meal and 2 hours after.
Allison's blood sugar before she eats is pretty normal between 64-102 but 2 hours after eating has been anywhere from 182 to 250 which is not good.  Her dr. says that her blood sugar does recover but it is taking too long.  He thinks that Allison has early stage Type 1 diabetes and wants to put her on insulin.

Of course all of this is happening THREE weeks before she goes 600 miles away to college.  UGH.

Here is where I could really use some advice from any of you all that have experience with this.I am wondering if having celiac disease in any way could be making her blood sugar stay high longer than someone without celiac disease?  Is that possible?  Or is it possible that what she eats could cause this?  She obviously eats a lot of rice based products.

Also, if any of you can give me advice on what we are going to expect in terms of her diet or any other issues, I think it would greatly relieve some of our anxiety about this whole thing.

Thank you all!

Beth
El Dorado Hills, CA


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