Gluten Free and Diabetes - This is a NIGHTMARE

[Ginger38]

I just don't know what to do anymore. The gluten free diet increased my blood sugar many years ago and despite positive blood work, meaning TTG IGA antibodies and horrid symptoms,  I was told to go back to eating gluten (crazy I know) but I only continued to get sicker and sicker, so I eventually quit gluten on my own, but it has been a constant struggle and has recently gotten worse, as I have become a full blown diabetic. I realize that a lot of the gluten free foods are not carb friendly or diabetic friendly, however, even when I stick to a certain carb amount, when I eat gluten free foods, my sugar is still spiking and then  just stays high for days. For example, I found some gluten free protein waffles, so excited. I stayed within my carb content and they still spiked my sugar. Same with toast, corn dogs, pizza crusts, pizza rolls, soups... basically anything that is gluten free regardless of carb content is not working with my body and my diabetes.  

I have recently been glutened and my stomach is a mess... not to mention have recently increased some meds that have GI side effects. So I need gluten free crackers, toast, pretzels, brown rice, things of that nature to eat when my stomach is so upset and not tolerating many foods. However, when I eat for my stomach my sugar spikes. If I were to eat, non gluten free, for my diabetes management, well we all know what would happen. This morning I had some gluten free pretzels, stayed in the carb content, and my sugar has spiked to 286 and has been there for hours.

i do wonder if being glutened, having that reaction in my body / immune system is somehow screwing my blood sugar up as well 

I just don't know what to do anymore. I can't eat what I need to eat for celiac and manage my diabetes. So I feel like I am killing myself either way - just trying to figure out which one is less traumatic - celiac or diabetes. Having both is an absolute NIGHTMARE, 

[SunshineFace]

Hi @Ginger38! So sorry you are having to go thru this! It’s so frustrating!! I am new here so I still have a lot to learn about ‘glutening’ but I wanted to share my story in case it helps. I first changed up my diet due to pre-diabetes diagnosis last fall. (Celiac/Gluten intolerance was never on my mind) I kept testing multiple times a day, and I found out quickly that all grains (incl wheat) spiked my BG the highest so it made sense to eliminate those first, along with high starch veg like potatoes, and fruit. Which meant I ate lots of eggs, cottage cheese, nuts & nut butters, fish, shellfish, lots of salads and meats. They were very filling and satisfying to me. This was only to be a 3-6 month experiment. So my numbers came down to the 150 range for normal spikes. But then they just stalled there. I finally remembered my mom told me I was allergic to egg whites as a kid, and would only cook the yolks for me. I assumed I outgrew that, so during this time I was also teaching myself how to make low-carb egg white buns, and egg white breads (made with coconut or almond flours) and basically eating a ton of egg whites. As soon as I realized that– I dropped the whites and only ate the yolks and my BG#s dropped into the 120s! And I was only able to put it all together because I got a continuous glucose meter to wear during that phase! As long as I kept the allergen out of my diet (egg whites), my blood glucose was able to stay in ‘normal-ish’ ranges, and any spikes quickly came down. That's my interpretation of why my BG# might have been artificially elevated. I started eating large amounts of an allergen, but had no ‘classic allergic' reaction. Only by watching my glucose settle down with CGM I confirmed I was making the right food choices. Like you pointed out, it makes me wonder if one of the other gluten-free grains you regularly consume might be a contributing factor? As an allergen? What are gluten-free grain products usually made from? Are you using a glucose meter throughout the day, or have you tried a CGM? I hope you feel better soon!

[Ginger38]

6 hours ago, SunshineFace said:

Hi @Ginger38! So sorry you are having to go thru this! It’s so frustrating!! I am new here so I still have a lot to learn about ‘glutening’ but I wanted to share my story in case it helps. I first changed up my diet due to pre-diabetes diagnosis last fall. (Celiac/Gluten intolerance was never on my mind) I kept testing multiple times a day, and I found out quickly that all grains (incl wheat) spiked my BG the highest so it made sense to eliminate those first, along with high starch veg like potatoes, and fruit. Which meant I ate lots of eggs, cottage cheese, nuts & nut butters, fish, shellfish, lots of salads and meats. They were very filling and satisfying to me. This was only to be a 3-6 month experiment. So my numbers came down to the 150 range for normal spikes. But then they just stalled there. I finally remembered my mom told me I was allergic to egg whites as a kid, and would only cook the yolks for me. I assumed I outgrew that, so during this time I was also teaching myself how to make low-carb egg white buns, and egg white breads (made with coconut or almond flours) and basically eating a ton of egg whites. As soon as I realized that– I dropped the whites and only ate the yolks and my BG#s dropped into the 120s! And I was only able to put it all together because I got a continuous glucose meter to wear during that phase! As long as I kept the allergen out of my diet (egg whites), my blood glucose was able to stay in ‘normal-ish’ ranges, and any spikes quickly came down. That's my interpretation of why my BG# might have been artificially elevated. I started eating large amounts of an allergen, but had no ‘classic allergic' reaction. Only by watching my glucose settle down with CGM I confirmed I was making the right food choices. Like you pointed out, it makes me wonder if one of the other gluten-free grains you regularly consume might be a contributing factor? As an allergen? What are gluten-free grain products usually made from? Are you using a glucose meter throughout the day, or have you tried a CGM? I hope you feel better soon!

Hi! Thank you for the response! I was prediabetic for years but guess I’ve finally passed that threshold into full blown uncontrolled diabetes.  I do have a CGM which has been very helpful! I never thought about allergies but did wonder if it has something to do with grains. Seems my body can’t tolerate them or something. Gluten free is usually corn, rice, potato starch, tapioca starch, oat, cassava, almond , just depends. If I eat cereal (no sugar) and stay within carb limit my sugar spikes, same with oatmeal which sucks bc both are easier on my stomach rather than say eggs. Since I have not mastered this gluten free diet 💯 my digestive system  isn’t in great shape, so I can’t really digest salad, veggies , eggs things like that. I have never had food allergy testing bc of the cost but I did a sensitivity test through Check My Body Health and it showed that I was very sensitive to lots of foods

[SunshineFace]

Yes @Ginger38, this is a hard place to be when you can tolerate very little! I used to eat carbs ALL THE TIME. Like almost exclusively. This list you gave: "toast, corn dogs, pizza crusts, pizza rolls, soups” That was my diet for decades. Very little thought to proteins and fats. And when I had to change my diet for blood sugar reasons - it was only then I realized how silly it was for me to eat one of the 3 main macronutrients 90% of the time…. I was already malnourishing myself unintentionally. No wonder my blood sugar levels were wacky and why I kept experiencing symptoms of vitamin/mineral deficiencies. 🙁 I had to change my relationship with food and why I need to eat (for health/nutrition reasons first). I had to learn how to cook very differently, because now I don't trust packaged foods and restaurants - they don’t necessarily have my health as their number one priority! I have yet to be properly diagnosed celiac, so I haven’t met with a celiac dietician yet, but I understand Celiac to be a malnutrition disease. Did you get to meet w/dietician for Pre-D/Diabetes? I bet you are not the first person on the planet with Celiac + Diabetes. 😁 There's got to be Celiac dietitians that understand eating gluten-free for Diabetic wellness. Did you meet with one for your diagnosis? Or you are not there yet either? 

[Ginger38]

On 7/14/2024 at 4:12 PM, SunshineFace said:

Yes @Ginger38, this is a hard place to be when you can tolerate very little! I used to eat carbs ALL THE TIME. Like almost exclusively. This list you gave: "toast, corn dogs, pizza crusts, pizza rolls, soups” That was my diet for decades. Very little thought to proteins and fats. And when I had to change my diet for blood sugar reasons - it was only then I realized how silly it was for me to eat one of the 3 main macronutrients 90% of the time…. I was already malnourishing myself unintentionally. No wonder my blood sugar levels were wacky and why I kept experiencing symptoms of vitamin/mineral deficiencies. 🙁 I had to change my relationship with food and why I need to eat (for health/nutrition reasons first). I had to learn how to cook very differently, because now I don't trust packaged foods and restaurants - they don’t necessarily have my health as their number one priority! I have yet to be properly diagnosed celiac, so I haven’t met with a celiac dietician yet, but I understand Celiac to be a malnutrition disease. Did you get to meet w/dietician for Pre-D/Diabetes? I bet you are not the first person on the planet with Celiac + Diabetes. 😁 There's got to be Celiac dietitians that understand eating gluten-free for Diabetic wellness. Did you meet with one for your diagnosis? Or you are not there yet either? 

Yes my diet was that way for most of my life as well! Sounds like you are doing much better though … me not so much. Just don’t have that motivation I guess, idk. I know I’m very overwhelmed trying to figure all this out and do what I need to do all the time with 2 special diets or whatever. I have met with a dietitian and it was a little helpful as far as gluten but not too helpful as far as diabetes goes. Diabetes seems to be unique to each persons body. No one size fits all. I would love to find a good dietitian who is very well versed in both diseases