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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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      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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