Diabetes like symptoms and more

[Gunni]

Hi, I have coeliacs but I also have some other symptoms I haven't really gotten to the bottom of.

I have diabetes like symptoms, or symptoms I'm told are exemplery of long-time untreated type-1 diabetes.

1. When eating meals high in carbohydrates, 30minutes later I start to feel pain in my extremeties (hands/feet), sometimes it starts like a slow burn or heat feeling. Shaking said extremeties often removes the pain for a couple of minutes and standing up and walking often does so as well. My solution if eating carb meals is often to take a walk afterwards f.x.
2. I have reynauds disease in my hands, has worsened over time, feels like I was damaging my hands with the carb diets..
3. When i didn't try to stray from carbs or move to Keto diets my hands were at one time so badly worn that I had trouble operating a mouse and keyboard and would alternate mouse movement to my left hand. I do not have carpal tunnel syndrome, the pain was oftentimes inside my palm f.x.
4. I can't sleep with anything but the lightest flax sheet below the waist, otherwise i will get a similar buildup of heat then stinging pain starting in my extremeties but sometimes leg muscles. Similar things happen if i wear shoes indoors for an hour or more or if i place my hands in my pockets and keep them there for 10m or more.

I have had diabetes blood tests and sugar tests performed. That is long-time blood sugar levels and a test where i ingest an x amount of sugar and they measure me afterwards, neither showed me to have diabetes. 

I also seem to have a higher dependency on good airflow than most, I use a fan everywhere and if i turn off my desk fan I definately feel more tired shortly and feel like I require more oxygen. If i forget to have my bedroom fan on or have it on but the window closed I feel a huge difference in my sleep quality. My red blood cell count has looked good for the past years, 5,2+.

My WBC is sometimes found to be below the 4.0-10.5 scale (some showings of 3.6, 3.3 and 3.9 f.x. over the years).

I have some GERD issues but nothing i can blame my diet on, have been gluten-free for many many years.

I have more data, symptoms and tests but I was mainly just hoping somebody might recognize some of these symptoms and be able to point me in the right decision, not expecting you guys to dig into my whole medical history.

Any ideas what these secondary symptoms might be indicative of?

Regards from Iceland!

[Scott Adams]

The usual place to start is to look closely at your diet to be sure that it, including medications, toothpaste, lotions, etc., are 100% gluten-free. The arthritic symptoms you described are often linked to those with undiagnosed celiac disease, or those with poorly controlled celiac disease. 

Assuming your diet is in order and you're not getting any gluten in it, this article covers some additional things to consider:

 Also, I spend a lot of time on computers and due to carpel tunnel issues switched many years ago to a thumb trackball mouse, which helped resolved many pain issues caused by using a standard mouse:

https://www.amazon.com/dp/B07MVLYT7Z/ref=twister_B07MVPXR7G?_encoding=UTF8&psc=1

[Gunni]

Thanks so much for the quick reply Scott, i've gone through alot of the documentation and will definately go over many of these topics with my doctor. I have however seen multiple digestive doctors here in Iceland, even asked for some of the tests mentioned in the documents here but was met with disinterest and confusion..

I feel like I might have to search elsewhere for professional assistance in managing my condition, can anyone suggest a knowledgeable private practitioner in f.x. UK that would be willing to take on a foreign national as a patient?

[Talia4]

Hi, I have the EXACT same issues as you. Took a few tests for diabetes in the past which came up as negative as well. Were you ever able to figure the cause and relieve your symptoms ? 

[Celiac16]

@Gunnihi! I’ve had similar concern with diabetes symptoms despite negative testing. I was having trouble breathing at night… I felt so weak I had to prop myself up to basically sitting to be able to breath while sleeping. I did test with sightly out of range anion gap and lactic acid but both enough for doctors to do anything… I was also getting extreme vertigo and nausea after eating (esp carbs).

I have been eating a low carb (under 20 g) high fat medium protein diet and feel a lot better. I am also taking thiamine, vit b1, which really helped my breathing and acidosis symptoms. B1 is also notorious low in diabetics which is interesting… I got a glucose monitor and b1 does indeed lower my glucose… very interesting to see the correlation with improvement of well being.
i have been chronically underweight my whole life and was always encouraged to overeat but never gained weight. Up until the point of the severe aforementioned symptoms, I had a voracious appetite and was eating 3000-4000 calories a day… which also made me think diabetes… hopefully the new diet will help me actually retain the calories I eat! 

[Scott Adams]

It is interesting that B1 lowers your glucose levels. Benfotiamine is the fat soluble version, and:

Quote

Benfotiamine is a lab-made version of vitamin B1, also called thiamine. Scientists are studying it to see if it might help conditions like diabetes-related nerve damage, Alzheimer's disease, and alcohol dependence. Early research into the potential benefits of benfotiamine has shown some promise.

 

[Gunni]

On 3/11/2024 at 10:21 AM, Talia4 said:

Hi, I have the EXACT same issues as you. Took a few tests for diabetes in the past which came up as negative as well. Were you ever able to figure the cause and relieve your symptoms ? 

Hey Talia4, I still try to stay on the lower end of carb intake but things are way easier for me these days.

It really looks like a digestive issue at the core in my case

 

As supplements with meals I'm now taking

3-4x 650mg betaine hcl without pepsin (to handle larger doses)

1-2x Doctor's Best digestive enzymes

 

And daily Share Pommelozzini.

This has helped my digestion immensely with carbs and fats. I'm way more tolerant of larger meals and things are a lot easier. Happy to hear any progress or findings on your end as well though!