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Celiac And Diabetes


BrittLoves2Run

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BrittLoves2Run Apprentice

Hello,

I was reading my latest issue of Living Without and read an article that said there is a link between Celiac and Diabetes and that you may be at an elevated risk.

Does anyone out there have both? Which were you diagnosed with first?

I'm worried I may have it. I have a lot of the symptoms, but I don't want to go to the doctors and look like a hypochondriac. One of my great grandparents died of diabetes complications. At my last eye appointment they went the extra step looking at my right eye and said the pressure looked high.

I've just been feeling so sluggish and tired even after being gluten-free for over 4 months now. I was also borderline hypothryroid, but not enough to put me on medicine (according to my doctor)

Just wanted to hear from anyone else who might be dealing with both!?

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BrittLoves2Run Apprentice

I also tested "pre diabetic" on work biometric screening for non fasting blood results.

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1974girl Enthusiast

I think the link is mainly with type 1 diabetes. My husband has that and we have a celiac child. He has genes DQ2 and DQ8 which can go with either one. My daughter shares those same ones so we will still keep a watch out for that. How old are you? Most type 1s occur before 25. You may still be type 2 diabetic however and it not be related. I am not saying that you are not. Actually, type 2 is more hereditary that type 1. Do you know anyone who has a blood monitor that you could do a baseline check? I make my husband prick my daughter ever so often just to see. Anything over 120, I'd go see a doctor just in case. It's ok to wonder, I have even pricked myself just to make sure. They sell a monitor and a few strips for $10 at Walgreens. I don't think you have to have a prescription. They are in the pharmacy however. We have forgotten his before on vacation and ran in and got that one.

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missy'smom Collaborator

There are a number of folks with adult onset autoimmune T1, esp. w/ more testing options, education and research done now. Adult onset is called T 1.5 or LADA, stands for Latent Autoimmune Diabetes in Adults. It is becomeing more known but still many docs do not know about it. My primary didn't. I had to ask for the tests. There are T2's who eventually become T1 due to burn out but this T1.5 is autoimmune, just like classic child onset T1 but slower progressing.

I have adult onset T1. I was mis dx as T2 for 2 yrs. I got my T1 dx at 40. I probably went undx and untreated for 10 years. I had what was thought to be gestational 10 years prior to my recent dx but it may have been T1 to start with. My OBGYN said my numbers were "off the charts" but I didn't get proper treatment or follow-up and was told it surely went away with no further testing as proof. I had symptoms continue after delivery but was uneducated. I also had undx celiac disease at pregnancy and that went untreated for nearly 10 yrs as well. I have DQ2 gene. My body still produces just enough insulin of it's own that I take only meal coverage insulin and don't need basal insulin and I can skip an insulin shot if I eat a low carb meal. That will most likely change over time and I will become more dependent on insulin and most likely end up fully dependent eventually just like classic T1. The testing for LADA involves GAD antibodies.

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missy'smom Collaborator

Fasting blood sugar, which is commonly the standard screening for dx, is not a good measure. I could still pass a fasting BG test at time of dx and probably could now because my fasting without insulin can still be non-diabetic around 85-95. I can be at 200 or more within minutes of eating any fast acting carb without insulin and yet can go slightly low as well without insulin. The BG pattern doe not match up with the conventional T1 or T2 profile. It is often mis-dx as T2 if it is caught "early", meaning a non-emergency situation. I got my dx because I advocated for myself, otherwise I would have fallen through the screening cracks or been dx in an emergency situation.

I asked for testing because after 2yrs gluten-free I still felt too fatigued, although SO much better than before but still not right. Anything that reflects more than a one-time BG is better as a test-A1c, glucose tolerance test, more than just 1 time finger pricks etc.

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BrittLoves2Run Apprentice

I asked my step dad last night if I could use his monitor.. it was about 1 hour after eating gluten free pasta with butter for dinner. It was 85. He is dibetic and said that seemed low for just eating, but from what i'm hearing from a lot of others is that is within normal range.

I went out and bought a monitor this morning and 2 hours after eating breakfast I was at 103, which is also considered normal.

I talked to a guy with diabetes at work this morning. He says if anything I may be Hypoglycemic, but I have no idea if anything is done for that!

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1974girl Enthusiast

Sounds like you are not diabetic...at least from those numbers! YIPPPEEE!

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missy'smom Collaborator

Your numbers look good :) Some foods can take a bit to show up in blood sugar so it is wise to check both 1 and 2 hrs as you did.

The treatment for hypoglycemia is dietary modification, but your numbers do not indicate hypos. I feel weak, shakey, can't think well and such when I am too low. Tired/fatigue is usually from high BG for me.

83 is considered absolutely perfectly healthy non-diabetic normal. 70 is slightly low but not worrysome, unless it's regular and even then very minor adjustment needed. Start getting into the 60's and that's a problem.

Some people with diabetes get used to considering anything under 90 or 100 low because of insulin use etc. but that doesn't apply to you.

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BrittLoves2Run Apprentice

@missys mom

Oh I know how it is. When I don't eat, I get shaky, weak, feel faint, get very hot and feel pretty awful before I eat again. I had to get up in the middle of the night last night TWICE to eat something because I was feeling So hungry and awful. The second time I could not go back to sleep. I think I will check my glucose again tomorrow morning after not eating all night. That is when I feel the worst.

But YAY! I certainly don't want anything else on my plate!!

Maybe it's my thyroid.. my TSH levels in Janurary were 4.5 doc said that was still in normal range (0.5-5) but I know there is a big dispute about that.

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missy'smom Collaborator

@missys mom

Oh I know how it is. When I don't eat, I get shaky, weak, feel faint, get very hot and feel pretty awful before I eat again. I had to get up in the middle of the night last night TWICE to eat something because I was feeling So hungry and awful. The second time I could not go back to sleep. I think I will check my glucose again tomorrow morning after not eating all night. That is when I feel the worst.

But YAY! I certainly don't want anything else on my plate!!

Maybe it's my thyroid.. my TSH levels in Janurary were 4.5 doc said that was still in normal range (0.5-5) but I know there is a big dispute about that.

Yes good idea to test fasting BG but also wake yourself up and test at nigh when you feel like that. I was going mildly low in the early a.m. regularly without insulin. I finally got organized, put a meter by my bed and forced myself to wake up, pry my eyes open and test and that's how I found out. I also found that by my usual wake-up time my body corrected up but it didn't feel good while I was low. The key with lows is not to over correct, for me that results in high BG, but for you it might mean your body pumps out more/too much insulin to cover and you and up on a roller coaster and low again later-reactive hypoglycemia. You have to figure out a food and portion that will give you a little something but not too much and not too fast, something with a little staying power if possible. And/or figure out what is causing the lows in the first place, if you find that it is low BG.

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BrittLoves2Run Apprentice

Yes. I do need to find out. Oddly enough I was higher before lunch today than I was 2 hours after lunch. I think i'm good. Just need to check over night and see what it is then. Then figure out how to fix it.

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woodnewt Rookie

There are a number of folks with adult onset autoimmune T1, esp. w/ more testing options, education and research done now. Adult onset is called T 1.5 or LADA, stands for Latent Autoimmune Diabetes in Adults. It is becomeing more known but still many docs do not know about it. My primary didn't. I had to ask for the tests. There are T2's who eventually become T1 due to burn out but this T1.5 is autoimmune, just like classic child onset T1 but slower progressing.

This is something that has crossed my mind over the past few years, but I have been dismissing as probably just unusual food intolerance. I'm disinclined to go to the doctor and really have a poor view of doctors in general, so I figure I'm just going to leave things be as long as things can be managed by diet. After I became very ill and lost a great deal of weight due to CC from gluten a few years ago, something has felt off, despite my recovery. My weight has been 10 lbs under what it should be, and though I have been eating well and maintaining a decent weight with BMI around 19-20, I can lose weight extremely easily and rapidly if don't eat enough for a couple of meals, or eat more starches and less fats. My diet is some odd hybrid of SCD and paleo, but it's also low carb and very high fat. I have noticed consistently that if I increase the carbohydrate content of my diet - eating a couple of extra starchy foods daily like fresh banana or sweet potato - within a day or two I start losing weight. This doesn't seem right, thus the concern shelved in the back of my mind.

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burdee Enthusiast

Hello,

I was reading my latest issue of Living Without and read an article that said there is a link between Celiac and Diabetes and that you may be at an elevated risk.

Does anyone out there have both? Which were you diagnosed with first?

I'm worried I may have it. I have a lot of the symptoms, but I don't want to go to the doctors and look like a hypochondriac. One of my great grandparents died of diabetes complications. At my last eye appointment they went the extra step looking at my right eye and said the pressure looked high.

I've just been feeling so sluggish and tired even after being gluten-free for over 4 months now. I was also borderline hypothryroid, but not enough to put me on medicine (according to my doctor)

Just wanted to hear from anyone else who might be dealing with both!?

Exactly what were your thyroid test results? Did your doc test free T4 and free T3, besides TSH? If he only tested TSH, what was his 'normal' range? Many docs and labs still use an outdated (too wide) normal range. Endocrinologists revised that range from previously 0.5-5.0 as normal to currently 0.3-3.0 as normal. My hypothyroid symptoms were overlooked for years because my doc used the old, outdate normal scale. My new doc saw that my TSH had been over 3.0 for over 10 years and diagnosed hypothyroidism (actually Hashimoto's thyroiditis).

If your doc only tested TSH, ask for a retest with free t3, free t4 and TPOab (thyroid peroxidase antibodies which indicate Hashimoto's or autoimmune thyroiditis highly correlated with gluten intolerance0.

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missy'smom Collaborator

This is something that has crossed my mind over the past few years, but I have been dismissing as probably just unusual food intolerance. I'm disinclined to go to the doctor and really have a poor view of doctors in general, so I figure I'm just going to leave things be as long as things can be managed by diet. After I became very ill and lost a great deal of weight due to CC from gluten a few years ago, something has felt off, despite my recovery. My weight has been 10 lbs under what it should be, and though I have been eating well and maintaining a decent weight with BMI around 19-20, I can lose weight extremely easily and rapidly if don't eat enough for a couple of meals, or eat more starches and less fats. My diet is some odd hybrid of SCD and paleo, but it's also low carb and very high fat. I have noticed consistently that if I increase the carbohydrate content of my diet - eating a couple of extra starchy foods daily like fresh banana or sweet potato - within a day or two I start losing weight. This doesn't seem right, thus the concern shelved in the back of my mind.

I too lose weight so easily just as you described.

What you are reporting doesn't seem right as you stated. If you are concerned about diabetes, it is wise to get tested. Better be wrong than too late intervening. It is so much easier managed with early intervention. I have had to ask for EVERY single test! I was dx with oral glucose tolerance test which was a good choice for me. But to explore LADA you need to get a serum c-peptide test and GADA antibody testing. Any doc can run an OGTT but the antibody test needs to be run by an endocrinologist. I had to find an endo on my own and but needed a referal to get in and my doc didn't mind giving me one, although he didn't send me to one himself. My primary did run the serum c-peptide test on my request, although they don't usually do it, and the endo ran it again.

Unexplained weight loss is a sign of diabetes. I lost 20 lbs before dx(the original type 2 dx) in a rather short time span although I had significant symptoms for years before. My other primary symptom at the time was fatigue, 100 times better than just before I went gluten-free 2 years prior but still not where I felt I should be. At some point, maybe 4 years before my initial type 2 dx, I had the blurred vision, extreme thirst and hunger, but that subsided after going gluten-free, although I now know it was diabetes at the time.

I have my gripes with docs and I am not a fighter by nature but my health is always worth it.

I encourage you to learn more about this and continue to explore and pursue it if it seems to fit.

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woodnewt Rookie

I have my gripes with docs and I am not a fighter by nature but my health is always worth it.

I encourage you to learn more about this and continue to explore and pursue it if it seems to fit.

Thanks for the info. I appreciate it. Maybe at some point I will get a full work-up but there is very poor medical care here and it will have to wait until I move. I do care about my health but this is not the place to go to the doctor if you don't have a very common condition.

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VydorScope Proficient

BrittLoves2Run,

I would encourage you to go down to walmart/cvs/walgreens/etc and pick up an A1C test. They are like $10-$20 and private. Take it and see what the result comes back. I would also suggest you pick up a glucose meter of your own. A store rand one is around $15 and they come with some test strips. Often with mail in rebates you get the meter free.

Then I would suggest you fast over night, shoot for 8 hours. Check your reading, should be around 70-110 for fasting. Then eat/drink something very sugary (and a decent quantity) with as little fiber/protein/fat as you can (pasta is a bad choice, it is in the middle of the gylcemic index). Then start checking your blood at 1 hour after your first bite. Check every 15 mins for at least 2 hours, preferably until you get through the forth hour. (fast during this testing. Do not eat/drink anything as it will skew results).

If you are not having blood sugar problems, you may spike to like 140 or there abouts in the first hour. That is not a concern, by the second hour you should be pretty close to the 80-120 range which is considered normal. IF it is hypoglycemia you would know for sure until the FORTH hour after eating. Your reading should not drop below 70 at any time... but keep in mind the numbers are a bit fuzzy so a 65 or 68 is likely not a concern... a 40 or 50 IS. If at anytime during this testing your result is less then 60 abort test, and eat.

If anything comes back out side say the 60-140 range, I would bring your results to your doctor and talk to them about it. Same with the AC1 test, if it comes back out side of normal take it to your doctor and see what he/she says.

I am not a doctor, the above is based on my personal experience. I started with hypoglycemia which eventually developed into diabetes. The testing I just described is very similar to what the doctors would do , but you save time and money doing it yourself at home.

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ynot Newbie

Fasting blood sugar, which is commonly the standard screening for dx, is not a good measure. I could still pass a fasting BG test at time of dx and probably could now because my fasting without insulin can still be non-diabetic around 85-95. I can be at 200 or more within minutes of eating any fast acting carb without insulin and yet can go slightly low as well without insulin. The BG pattern doe not match up with the conventional T1 or T2 profile. It is often mis-dx as T2 if it is caught "early", meaning a non-emergency situation. I got my dx because I advocated for myself, otherwise I would have fallen through the screening cracks or been dx in an emergency situation.

I asked for testing because after 2yrs gluten-free I still felt too fatigued, although SO much better than before but still not right. Anything that reflects more than a one-time BG is better as a test-A1c, glucose tolerance test, more than just 1 time finger pricks etc.

Wow! This is exactly the behavior of my blood glucose when I made a number of measurements a year or so ago. Since I couldn't find any information on this type of profile, the only thing I thought to do was stop eating fast acting carbs. It worked for the most part. But, I still have periods ( weeks at a time ) where I just feel extra fatigued, and I can associate it with an increase in carbs. If you have anymore to share about what is going on here, please do!

I also lose weight very quickly if I don't eat well, but otherwise don't have a problem maintaining weight. Based on what you've said, I guess I should get tested for type 1. Arrrrgh, I hate doctors. Thanks for the post, though.

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missy'smom Collaborator

Wow! This is exactly the behavior of my blood glucose when I made a number of measurements a year or so ago. Since I couldn't find any information on this type of profile, the only thing I thought to do was stop eating fast acting carbs. It worked for the most part. But, I still have periods ( weeks at a time ) where I just feel extra fatigued, and I can associate it with an increase in carbs. If you have anymore to share about what is going on here, please do!

I also lose weight very quickly if I don't eat well, but otherwise don't have a problem maintaining weight. Based on what you've said, I guess I should get tested for type 1. Arrrrgh, I hate doctors. Thanks for the post, though.

There is variation, even among people who have LADA. Not all LADA's have the same weight issues I do. But rapid, unexplained weight loss is a classic symptom of diabetes. Google "unexplianed weight loss and diabetes" for an explanation of why this happens. I got my dx changed from T2 to T1 because futher tests showed that I have GAD antibodies, which means my body is/was attacking my pancreas. These antibodes are specific to LADA. There are other antibodies for classic T1. And, my c-peptide test shows that my pancreas has greatly diminished ability to make insulin. I am insulin deficient. Somehow my body makes enough insulin to cover my baseline but can't make enough, fast enough to cover fast acting carbs. If I eat low carb I can get non-diabetic numbers 80-120 and don't have to take insulin. My c-peptide test was THE lowest in the normal range. I seem to not have any or very little insulin resistance(which is common in type 2) so my body is able to make the most effective use of what insulin I do make. Some LADA's have insulin resistance. If I had delayed until my baseline/fasting got worse it would have meant more beta cell burn out-meaning further loss of the insulin producing cells. I am very lucky to have caught it when I did. It is much easier to manage with some of one's own insulin production in tact. I take insulin, as needed and I can take small doses, which are much more predictable and safe.

In LADA, like classic chidhood onest T1, the body makes antibodies and attacks the pancreas. In child-onset, it is a rapid attack that destroys most of the insulin producing cells very quickly. Some kids do have some level of remaining ability to produce insulin , but it is often lost after treatment starts, for a couple of reasons. LADA is also an autoimmune attack on the pancreas but it is slow progressing. I am a member of a support group just for LADA and so many people report symtoms well up to 10 years before dx and even in my case, the doc and I have reason and evidence o believe I may have gone undx a good 10 years.

The website for bloodsugar 101 has some info. on LADA. Have to dig around a bit to find it and it and I can't link to the page directly. I've tried. Have to click on one of the tabs at the top to get to it, if I remember. There may be a few other resources out there.

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VydorScope Proficient

missy'smom,

Interesting stuff about LADA, not heard that label before. Most of what I just read on that bloodsugar101 site fits with my understanding of blood sugar at least, other then their ranges are a bit tighter, but they admit to that. Thanks for that link, when I have more time will have to read up. I due for my bi-yearly endo doc visit soon, and be interested in what he has to say about it.

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