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Diabeties And Celiac Disease


delawaregirl

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delawaregirl Apprentice

My Mom has had adult onset diabeties for years and was diagnosed with Celiac about 2 yrs ago. She is 85 and lives in a continuous care facility (indepentent living now) and fixes some of her meals but eats out or in the dining hall for a large portion of her meals. She is having a horrible time controlling her blood sugar levels. The are steadily going higher but she will also have periodic lows. She is seeing a dietician and an endrocronolgist who have been working on her diabetic diet but are not very helpful or knowledgeable about Celiac. We live in a smaller town with not a lot of choices for Doctors. She never had problems with her blood sugar prior to being diagnosed with Celiac. I can not help but feel that there is a connection but can not get any answers. She is getting very frustrated as I am. My questions are: Does anyone understand what the connection is between the two diseases? How do we balance the two diets? She has a lot of trouble getting in all of the carbs and sometimes does not get in all of the protein. Where do we go to get help? How do we find a Doctor that understands both diseases?


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trents Grand Master

One thing you did not address is the question of her consistency in avoiding gluten intake in the context of the living situaion she is in. Does the staff there understand what gluten is and how it is hidden in food ingredients they may be using every day as they prepare meals? If she is not yet really gluten-free, it might be difficult to ascertain the impact of the gluten on her blood sugar control as you are dealing with two variables.

Steve

delawaregirl Apprentice
One thing you did not address is the question of her consistency in avoiding gluten intake in the context of the living situaion she is in. Does the staff there understand what gluten is and how it is hidden in food ingredients they may be using every day as they prepare meals? If she is not yet really gluten-free, it might be difficult to ascertain the impact of the gluten on her blood sugar control as you are dealing with two variables.

Steve

It is up to her to choose her food from a menu and I am sure that at times she may get some gluten that is hidden. She is 85 and none of this is easy for her. She does cook for herself but enjoys going to the dining hall so that she does not always have to eat alone and so she does not always have to cook. What I am really trying to understand is that if she manages to be 100% gluten free will the flucuations in the blood sugar resolve itself.

trents Grand Master

When she gets glutened does it seem to really upset her system or is she one of those celiacs (like me) who doesn't experience much upset when glutened, symptomatically that is? The reason I'm asking is that certain medical conditions, like infections, can cause blood sugars to be elevated, even in nondiabetics when they are older. If gluten really throws here body for a loop, then it might be having some effect on her blood sugars.

Steve

elye Community Regular

I am a type one diabetic, and I know that like some of the other type ones on this forum, getting glutened results in skyrocketing blood-sugars for me. I don't exactly know why this happens, but sometimes I'll know I've accidentally ingested gluten because I have a sudden high bs reading, as I normally have very tight control. So from my experience, eating gluten has a definite negative impact on my diabetes control, and I think that this is not uncommon in the world of diabetic celiacs...and there are MANY of us out there! :)

  • 2 weeks later...
celiac sucks Newbie
My Mom has had adult onset diabeties for years and was diagnosed with Celiac about 2 yrs ago. She is 85 and lives in a continuous care facility (indepentent living now) and fixes some of her meals but eats out or in the dining hall for a large portion of her meals. She is having a horrible time controlling her blood sugar levels. The are steadily going higher but she will also have periodic lows. She is seeing a dietician and an endrocronolgist who have been working on her diabetic diet but are not very helpful or knowledgeable about Celiac. We live in a smaller town with not a lot of choices for Doctors. She never had problems with her blood sugar prior to being diagnosed with Celiac. I can not help but feel that there is a connection but can not get any answers. She is getting very frustrated as I am. My questions are: Does anyone understand what the connection is between the two diseases? How do we balance the two diets? She has a lot of trouble getting in all of the carbs and sometimes does not get in all of the protein. Where do we go to get help? How do we find a Doctor that understands both diseases?

I have type 1 diabetes and I noticed low blood sugars before being diagnosed with celiac and that was because the food I was eating was not being absorbed so I had low blood sugars. Because I was experiencing low blood sugars I went back to doctor and the doctor changed the amount of insluin I was getting, assuming that I was getting too much. So when I was diagnosed with celiac and I went on a gluten free diet, more food was absorbed and my glucose leverls starting running high. I hope this helps!

-Maggie-

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    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
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