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Sick Of Being Sick

peaceloveandinsulin

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peaceloveandinsulin Newbie
peaceloveandinsulin
Posted

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
miamia
Posted
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
psawyer
Posted

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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    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

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    • knitty kitty
      Pain in the right side of abdomen

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      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
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