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Sick Of Being Sick


peaceloveandinsulin

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peaceloveandinsulin Newbie

Hi, my name is Rachel and I was diagnosed with type one juvenile diabetes when I was five... and then when I turned sixteen I was diagnosed with celiac. I'm sure I have always had celiac, but it took them years to diagnose it. Now I am almost 24 years old, and was just diagnosed with autonomic neuropathy and gastroparesis,(both complications of having diabetes for soo long). I'm sure there are other people out there like me... but I have yet to meet them, and very few people seem to understand what my life is like on a daily basis. Noone seems to understand that no matter how hard I try something is continually wrong or I am continually nausious. Everything affects everything else, and I feel like I can no longer look forward to good health, even in my young days. Every time I try eating out (gluten free) I throw up which now I understand could be from the gastroparesis, but even when I am complertly gluten free I am still always bloated, sick, and tired. In turn the gastroparesis (which means my stomach doesnt empty properly and food sits there for long extended periods of time, undigested) caused my blood sugars to sky rocket out of control because I cannot take the proper amount of insulin when food is not digesting at a proper rate. I have no idea who to talk to...Because quite honestly noone seems to quite understand what I am going through. Food is expensive (especially gluten free), and co-pays add up. Co workers are sick of me calling out sick...and I am just plain sick of being sick...is there anything that anyone knows of to help me..(other than the obvious eating gluten free and controlling my blood sugars)...Maybe things will get better when I go back on the insulin pump, but right now I work at a hospital in the MRI dept. and the insulin pump of course is not MRI compatible. Plus I have been written up numerous times for my excessive absences even though for more then half of them I was right downstairs from my dept in the Emergancy Room. I feel like without my health there really isnt all that much that I am able to do...or to look forward to... except being sick all of the time ..and that my health as I get older will probably statistically only get worse...does anyone have any suggestions???


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miamia Rookie
Hi, my name is Rachel and I was diagnosed with type one juvenile diabetes when I was five... and then when I turned sixteen I was diagnosed with celiac. I'm sure I have always had celiac, but it took them years to diagnose it. Now I am almost 24 years old, and was just diagnosed with autonomic neuropathy and gastroparesis,(both complications of having diabetes for soo long). I'm sure there are other people out there like me... but I have yet to meet them, and very few people seem to understand what my life is like on a daily basis. Noone seems to understand that no matter how hard I try something is continually wrong or I am continually nausious. Everything affects everything else, and I feel like I can no longer look forward to good health, even in my young days. Every time I try eating out (gluten free) I throw up which now I understand could be from the gastroparesis, but even when I am complertly gluten free I am still always bloated, sick, and tired. In turn the gastroparesis (which means my stomach doesnt empty properly and food sits there for long extended periods of time, undigested) caused my blood sugars to sky rocket out of control because I cannot take the proper amount of insulin when food is not digesting at a proper rate. I have no idea who to talk to...Because quite honestly noone seems to quite understand what I am going through. Food is expensive (especially gluten free), and co-pays add up. Co workers are sick of me calling out sick...and I am just plain sick of being sick...is there anything that anyone knows of to help me..(other than the obvious eating gluten free and controlling my blood sugars)...Maybe things will get better when I go back on the insulin pump, but right now I work at a hospital in the MRI dept. and the insulin pump of course is not MRI compatible. Plus I have been written up numerous times for my excessive absences even though for more then half of them I was right downstairs from my dept in the Emergancy Room. I feel like without my health there really isnt all that much that I am able to do...or to look forward to... except being sick all of the time ..and that my health as I get older will probably statistically only get worse...does anyone have any suggestions???

alot of what you said rings very true for me too. I cannot swear but I ahve gastoparesis as well and I just started on Reglan and for the first time in four years I have seen some positive results.I would post more but I am exhausted and will try to tomorrow.

MIAMIA

psawyer Proficient

Rachel, welcome to the board.

While I don't have anything specific to share with you regarding your symptoms, you are not alone.

There are a number of members here who have both celiac disease and type I diabetes. I am one of them, but there are numerous others. A couple who come to mind are elye and ~alex~. Look them up in the members page. The three of us are all in Ontario, and communicate frequently.

Uncontrolled celiac plays hell with blood sugar control, because you eat food with carbohydrates, but it is not absorbed. You may have taken insulin based on what you thought would be absorbed, and ended up taking too much. This is a great way to meet the paramedics in your area, and visit various emergency rooms. I have so been there, during the years prior to my celiac diagnosis.

Once your villi heal and your absorption resumes, you will find that you need substantially more insulin, especially the fast acting type.

Balancing the two diets is certainly a challenge. One thing that I will tell you that you must consider absolute is this: WHEN THE TWO DIETS CONFLICT, THE GLUTEN-FREE DIET MUST WIN. A brief variance in your glucose does far less damage than even a little gluten.

I am 53, and was diagnosed with type I diabetes at 31. I was diagnosed with celiac 14 years later.

You will find tremendous support here, and lots of answers. If you have a specific question for me, send me a PM; I can go into more detail about my experience, but will not post it.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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