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Would Like Your Opinions Please

GoSurf1

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GoSurf1 Newbie
GoSurf1
Posted

Hi,

I am a type 1 diabetic (x 15 years) and i believe i may have celiac dz. I realize that having type 1 diabetes already puts me at a higher risk group for celiac. I am a healthcare professional and i was at a conference yesterday listening to a doctor speak. I have thought before that i might possibly be celiac because of GI problems that i have such as extremely painful bowel movements, diarrhea, bloating, gas, constipation at times, etc. However yesterday this MD mentioned some other symptoms that i didnt even realize were symptoms, and i have these also. I have had a "rash" that looks like small dry pimples on the backs of my arms and side of my upper thighs for years. i have dried acne wash and other treatment to no avail. I now realize this may be the DH he mentioned and that i have read about on here. I also have suffered from migraines for years. I currently have to take a daily prophylactic drug (topamax) to help prevent them. I read on someone elses comment about vitiligo which i also have. Everything seems to be coming together and making sense now. Of course i plan to talk to my endocrinologist on my next visit about this, but i just wondered about other peoples opinions, thoughts, etc. Would you be in agreement? I started a gluten free diet today just to see if it helps at all in the next week or 2. It is a really difficult, expensive diet and i greatly sympathize with everyone. Thanks for any input.

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zero Newbie
zero
Posted

I will just mention that if you are planning on getting a blood test for celiac then you should be consuming gluten in your diet.

elye Community Regular
elye
Posted

Welcome, Gosurf!

You've come to the right place! :)

One in eight type one diabetics are also celiac, and there is suspicion now that the number may be even higher. Your symptoms certainly sound like a problem with gluten. I would make an appointment with my GP and/or endo and insist on the celiac blood panel. Make sure you are consuming gluten! Also be aware that false negatives are not uncommon, so the blood work can rule in the disease, but cannot rule it out.

Good luck! Keep us posted! :)

rinne Apprentice
rinne
Posted
Hi,

I am a type 1 diabetic (x 15 years) and i believe i may have celiac dz. I realize that having type 1 diabetes already puts me at a higher risk group for celiac. I am a healthcare professional and i was at a conference yesterday listening to a doctor speak. I have thought before that i might possibly be celiac because of GI problems that i have such as extremely painful bowel movements, diarrhea, bloating, gas, constipation at times, etc. However yesterday this MD mentioned some other symptoms that i didnt even realize were symptoms, and i have these also. I have had a "rash" that looks like small dry pimples on the backs of my arms and side of my upper thighs for years. i have dried acne wash and other treatment to no avail. I now realize this may be the DH he mentioned and that i have read about on here. I also have suffered from migraines for years. I currently have to take a daily prophylactic drug (topamax) to help prevent them. I read on someone elses comment about vitiligo which i also have. Everything seems to be coming together and making sense now. Of course i plan to talk to my endocrinologist on my next visit about this, but i just wondered about other peoples opinions, thoughts, etc. Would you be in agreement? I started a gluten free diet today just to see if it helps at all in the next week or 2. It is a really difficult, expensive diet and i greatly sympathize with everyone. Thanks for any input.

You may be an undiagnosed celiac with diabetes as a consequence of that. :)

I would say that if you have been under doctor's care for fifteen years with the diabetes and migraines then you need to look at just how much your doctors are helping you, sorry if that sounds rude but in my opinion the medical system is structured to profit from your illness and the proof of that is that you are losing your health, now it is digestion issues.

I had migraines but they went away, I lost the pigment on my hands but it came back, this happened when I changed my diet.

I wish you much healing.

GoSurf1 Newbie
GoSurf1
Posted
  • Author

Yes i understand that eliminating gluten would cause problems with testing. Basically I just wanted to try the diet for a week or 2 and see if the rash goes away, headaches get better, feel different, that sort of thing. I don't go back to my endo for a couple of months so i can go back to a regular diet. I wanted to see if other people thought that it sounded like celiac also. If anyone here had DH, where was it located? My "rash" is on the backs of my upper arms and also on the outer sides of my thighs. it has probably been there for 8 years or longer. The vitiligo is just a small(3" x 3")area on my chest that appeared about 2 or 3 years ago i guess. I am very curious to see if the diet will help, but what a pain! I am having to read everything and then sometimes i still don't know! I am getting tired of rice chex and envirokidz stuff, haha. Thanks for all your replies. i Really appreciate you taking the time to write.

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      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

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      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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