High Blood Sugar, Celiacs Scared And Confused...help!

[gregbell232]

Hi all,

Need to know what to think because my docs are very confused right now. Short background... Diagnosed with T1DM in 2010 A1C=10 FBG=350, PCM sent me to emergency room. I accepted my fate as a T1D, but the emergency room physician was not convinced said my body was obviously making insulin and my bs was actually dropping following eating... Put me on IV for an afternoon sent me home with BS ~180. Over the course of a week my BS spiked back up and I lived in the 300s (and felt LIKE CRAP). This kept on for about two weeks. I remember very vividly after eating a Chili's coming back to work feeling very very shaken and dizzy, also pale as a ghost. I grabbed my meter and to my surprise my BS was 100! Remember I was not an any medication and was checked at 300 just that morning. From that time forward my BS was in the 40-80 range (yes with one 26). Went back to the doctors about 6 weeks later re-ran A1C=5.0. Endo said she had never seen anything like this! She re-ran every diabetic test she could think of, all came back stone cold normal...even low 60 after glucose challenge. She gave me a hug told me I didn't have diabetes and I did cartwheels out of her office!

Something though still did not seem right... I had had persistent stomach pains for about 1.5 years before and thought this was a great time to see if it was tied to the blood sugar issues. Endo Dx'd with celiac disease w/blood and biopsy. Mentioned that Celiacs could have been causing bizarre blood sugar spike.

Almost one year to the day (and after being strictly gluten-free), another blood sugar explosion! 385-400 for about two weeks then a random plunge to 100 and fine for another year...

Which brings us to today, my BS is 250 feeling crappy for the last week and thought I should check. Went to the ER as I was urinating like crazy and could barely sleep through the dry mouth. Put me on fluids again, pulled my record from the last two trips and said, well this is DEFINITELY not how T1DM works... you don't recover! Brought in internist and said nothing like he has ever seen. Maybe pancrease tumor, maybe thyroid, maybe finally T1DM taking over.

So I wait... feeling like crap hoping and praying that my BS drops to normal again. Asked for insulin to use temporarily and they laughed at me, saying they would never give insulin to a person with BS levels in the 200s. I have a CT scan of my organs tomorrow praying for an explanation that is NOT cancer.

Has anyone experienced anything like this? Honestly I am 31 years old and a military pilot (physically fit). This will be the end of my career if T1DM and I am supporting my wife and children. Scared to death!!!!! I know there are successful people with T1D who have normal lives, but I have NEVER heard of anyone with celiac disease+T1 (though I have heard it is very common).

I am basically accepting the T1DM and am looking for some inspiration and encouragement that I will be able to care for my family and have a decent standard of living if I expertly manage both. Anyone else out there????

[Skysmom03]

My husband has both. He has had type 1D for almost 35 years and was diagnosed with celiac a year and a half ago. ( although he had severe damage to his intestines). He does live a normal life. He does have a pump but regardless of that he counts his carbs and doesn't eat gluteny products! There are lots of things he can have that he enjoys. He is not miserable by any means. He does have a harder time controlling his bs since the celiac but nothing too major.

[gregbell232]

My husband has both. He has had type 1D for almost 35 years and was diagnosed with celiac a year and a half ago. ( although he had severe damage to his intestines). He does live a normal life. He does have a pump but regardless of that he counts his carbs and doesn't eat gluteny products! There are lots of things he can have that he enjoys. He is not miserable by any means. He does have a harder time controlling his bs since the celiac but nothing too major.

Thank you so much for your reply! Thanks for not slamming me for asking such a question. It is just more unknown... I knew scores of people w/celiac disease at my Dx so it didn't seem impossible to cope with. I know very successful people with T1, but just not both...

Honestly I have lived a strict diabetic diet since my first (apparently) misdiagnosis of type 1 <100 carbs/day. I have not even tasted a sugary or sweet treat in 2 years. To the extent that my PCM and dietitian threatened to send me to the shrink for an eating disorder (which honestly i believe I had) if I didn't eat more carbs and exercise less (triglycerides came in at 18). Some days I was at zero carbs just because I was so afraid of the BS shooting up again. I know I was running massive calorie deficits but was sooo afraid of DM that I was starving myself.

[GFinDC]

Hi Gregg,

There are other members on the forum with diabetes, but I don't know if it is T-1 or T2. It sounds lie you are doing a good job with the diet. I was going to suggest a Paleo type diet with limited carbs but you are already doing that. They say autoimmune diseases like to run in packs which just means it is not uncommon for people to get more than one. Dr, Peter Greens book Celiac Disease A Hidden Epidemic says there is some indication that autoimmune thyroid disease symptoms can improve on the gluten-free diet. Stretching that to diabetes doesn't seem entirely crazy, but it might be.

Some people say alpha-lipoic acid helps their glucose control. Metformin (commercial med) is also supposed to be good.

You may find some herbs or foods can affect your blood glucose levels even if they aren't carbs. Metformin is based on Goat's rue, an herb. So if one herb can affect blood glucose then others probably can also. Can you remember anything unusual you were eating during your "attacks"? It might help to keep a food log so you can look back and possibly identify foods that are potentially problems.

And thanks for serving our country!