For Those W/celiac And Diabetes?

[JustAGirl79]

For those of you who have celiac and diabetes, I have some questions.

Which diagnosis came first?

If celiac was the first diagnosis, how long was it before diabetes developed and/or was diagnosed?

What were your symptoms of diabetes?

Does celiac and/or diabetes run in your family?

[psawyer]

My type 1 diabetes diagnosis came in March of 1986. The diagnosis of celiac disease came in the summer of 2000, fourteen years later. My celiac symptoms became overt in 1995, but I had had digestive issues for decades.

I am the only diagnosed celiac in the family. I strongly suspect that my father also has celiac disease, but he says he doesn't and so he doesn't need to be tested for something he doesn't have.

My mother is a type 2 diabetic. She was diagnosed about 40 years ago.

Both my parents are in their mid-eighties.

[kenlove]

Was diagnosed with celiac about 4 years ago. Diabetes to the point where I have to take meds just 4 weeks ago and i'm still adjusting.

The only celiac in the family although mothers father had diabetes for a long time so I figured it was in the genes.

ken

For those of you who have celiac and diabetes, I have some questions.

Which diagnosis came first?

If celiac was the first diagnosis, how long was it before diabetes developed and/or was diagnosed?

What were your symptoms of diabetes?

Does celiac and/or diabetes run in your family?

[missy'smom]

For those of you who have celiac and diabetes, I have some questions.

Which diagnosis came first?

If celiac was the first diagnosis, how long was it before diabetes developed and/or was diagnosed?

What were your symptoms of diabetes?

Does celiac and/or diabetes run in your family?

Celiac DX came first. I went at least 8 years undiagnosed for sure, who knows, maybe longer. 2 years after gluten-free I was still not feeling where I thought I should be so I insisted on test for things I thought possible-diabetes was one.

I had gestational diabetes and looking back my doc and I think that I may have had diabetes before that and probably for the 10 years after my son was born until DX. I mentioned problems to my doc when I was in my early 20's and he laughed at me and walked out of the room, not even finishing the appoinment! I was 27 when I got the gestational DX. Only months after current DX, I have found that my insulin production is at the lowest possible value of the range, basically type 1. If you suspect problems insist on testing!!! The sooner the better!!!

Symptoms are tricky to pinpoint or explain. I don't fit the profiles so the docs ignored me. My intuition, experiences, knowing my body well and basic knowledge of nutrition led me to believe that I had it. Managing it has cured me of the remainder of that lingering bit of fatigue that being gluten-free 2 years didn't take care of. And fatigue is one of my early symptoms.

No history of diabetes in my family-not a single person on both sides, except father recently DX but only taking meds. no insulin but he has very poor health and taking meds that are known to cause diabetes. celiac disease clearly runs on mom's side of the family, not Dad's. Maybe I won the gene lottery on both sides! But I suspect I have a form of diabetes that is a slow progressing autoimmune form of type1.

[kenlove]

Peter and Missy's mom,

Maybe you can offer some helpful hints. Was diagnosed with diabetes (T2) 2 weeks ago. Sort of happened by accident when I went to the ER for what turned out to be Pneumonia and broken ribs from coughing.

I've got to head out shortly to go pick up my glucose monitor and so on and they do have me on something called Glipizide.

Obviously its another major lifestyle change to go though and it caught me someone off guard.

Being a diabetic celiac must mean some added difficulties.

ANy thoughts?

Ken

[psawyer]

Managing both diabetes and celiac disease presents a few challenges beyond dealing with just one, but for the most part the diets mesh well.

Rule #1: When there is a conflict between the two diets, the celiac gluten-free diet must take precedence over the diabetic diet, every time. A diabetic can cheat occasionally. A celiac simply can't.

Being a celiac is all about what you eat. Being a diabetic is all about how much of it you eat.

The extra challenge comes from the fact that many gluten-free substitute products are higher in fat and carbohydrate content than the "regular" versions.

Some of us who were diabetic first have found that the blood sugar control improves on the gluten-free diet. I was having serous control problems prior to going gluten-free, but that was due to the unpredictability of my absorption. Since this went on for years, it is hard for me to make a comparison.

I'll probably have some more thoughts later.

[missy'smom]

Ken,

From my perspective the gluten-free diet and managing diabetes are not incompatible. I just choose gluten-free carbs instead of non-gluten-free ones. There are a few low-carb breads and tortillas that have wheat in them that are off limits but I don't consider it a great loss. As Peter mentioned, the added factors are the amount and timing of the food eaten. Personally I learned very early on that the ADA diet was not going to work for me so I choose to manage it with a very low-carb diet so the few carbs I have are simple, naturally gluten-free ones and most of the food I eat is composed of mostly fresh meats and veg. nuts, dairy with a few processed products. The foundation of the gluten-free diet. It was actually easier for me to transition because going gluten-free not all that long ago(almost 3 years now), I had already given up alot of stuff and had become an avid label reader and developed other coping skills that helped me.

Diabetes is very individual. We all have different levels of pancreatic function and other mitigating factors, like Peter mentioned. I have to respectfully disagree with Peter though or add a word of caution about "cheating", high blood sugars cause damage to pancreatic insulin producing beta cells, just like gluten causes damage to the villi. In fairness to Peter, it may depend on what you call cheating and how you cover it and how often you do it... it can be a slippery slope. There are those who cheat on gluten-free and there are consequences for cheating with celiac disease and diabetes alike. There are various approaches to medication, diet and advice about what one should or should not eat. We all have our own choices to make towards finding balance. We don't have to just accept the consequences of the disease though. There is alot we can do to take control.

This is my advice.

Your meter is your friend. Test and test often. Keep charts of what you eat and BG readings and you will soon learn how different foods affect you and what works for you. I happen to use these charts click on "daily glucose tracker" Open Original Shared Link They give me sufficient space to write what and how much I ate for a meal.

This is another frequently recommended resource. Open Original Shared Link

And finally I recommend reading Dr. Richard K. Bernstein's Diabetes Solution. Dr. Bernstein has diabetes himself and has lived a very long, healthy life. I have found it to be a very helpful resource.

You are welcome to get in touch with me anytime Ken. I wish you the best of health. Karada ni kiyotsukete kudasai.

[kenlove]

Peter and Missy's mom

Thanks very much for your comments and advice.

Today was the first time I ever took my own blood and glucose etc. I suppose after 4 years of celiac etc. I can get used to this too.

Doc wants me to take readings each time I wake during the night. Usually every 90 minutes to change shirts an relieve myself.

This is not normal so my short term goal is to figure it out. Diet control I hope is not a problem although as you've both mentioned

there are some areas of concern trying to do both. The amount of carbs in some of the gluten-free stuff is much more than normal. Just have to keep watching and metering.

Thanks again and thanks for the links too. I'll explore more tomorrow

Ken

[missy'smom]

Ken everyone is different, but I find that I do better from a blood sugar AND digestive standpoint if I fast after dinner and don't have anything more to eat until the next day breakfast. I sleep better too. Occasionally I'll have a 1/2 or a glass of wine and just a bit of extra dark chocolate or just a few nuts 2 hrs. after dinner if I get dinner in earlier. I have always measured my carbs- in a measuring cup-and ate the same simple meals several times and upped my protein or tried a different amount of carb if I got numbers that weren't within range of my goal. Made a list on the fridge of various carbs and the amounts that worked for me when I found them.

[kenlove]

This is really what I'll have to start doing, I seldom eat after dinner and if too many carbs, usually fall asleep. Its pretty obvious i have to watch things much more closely. In terms of snacks etc. the nuts don't bother you?

Guess it will just take some time to get in the swing of things. Do you find some cards affect your levels differently especially with the celiac friendly grains?

thanks again

ken

Ken everyone is different, but I find that I do better from a blood sugar AND digestive standpoint if I fast after dinner and don't have anything more to eat until the next day breakfast. I sleep better too. Occasionally I'll have a 1/2 or a glass of wine and just a bit of extra dark chocolate or just a few nuts 2 hrs. after dinner if I get dinner in earlier. I have always measured my carbs- in a measuring cup-and ate the same simple meals several times and upped my protein or tried a different amount of carb if I got numbers that weren't within range of my goal. Made a list on the fridge of various carbs and the amounts that worked for me when I found them.

[missy'smom]

From a blood sugar standpoint, nuts have carbs but they also have alot of fiber and are slower digesting so don't spike the blood sugar rapidly. I still have to watch the amount. From a GI standpoint, I used to not be able to tolerate nuts and seeds but now my body is OK with it, I do still have to watch it in the evening sometimes, my system is still a little sensitive at times. I'll often have a 1/4 or 1/3 cup for my afternoon snack. I'll sometimes have a small piece of cheese as an after dinner snack. I really do have to give myself enough time to digest before bed.

Some carbs will spike the BG up faster and more than others. You can conduct experiments with your meals and meter and see how your body reacts. You can check 1 hr. after a meal and again at 2hrs. to see what happens. I now no longer consume any grains, except a little quinoa on occasion, but this is what I found in the past. With rice, I found that the longer the grain the less spike-same for brown or white. Some say that brown is better overall, but I didn't find that much difference with the shortgrain Japanese brown-portion was the same as the white. With the whole grains like quinoa, brown rice and others, you may find that your BG goes down at 2nd hr. and may get a rise again 3 or 4 hours after eating(I tested and found that I did) because they are slower digested. If you find that to be the case you may want to think about timing your next meal so that you are not doubling up your BG with that rise plus the rise you're getting from the new meal. Portion control also helps minimize the effect of that rise. If your BG goes way up with any grain, you can try that meal again with a smaller portion(half) of the same grain and see what kind of a difference it makes. Many find that sweet potatoes are less spiking than other potatoes and waxy less than baking. I refer to the orange fleshed American sweet potatoes-Satsumaimo spiked me way high! Quinoa has alot of protein and seems to be much less spiking than the rest, it still seems to follow that pattern that I mentioned with the whole grains. It's really important to balance the carbs with enough protein too as protein slows down the action of the stomach and helps slow the carbs down too. I always eat protein for the first few bites rather that just jumping into the carbs. Here's a tip about testing supplies. I recently found that if I order supplies through my insurance-90 day supply at a time, I end up getting the supplies at a cost equal to buy 2 get one free.

[kenlove]

THis is a big help and waht I need to figure out. Everytime I got up last night I took a readying. it spiked 6 hours after the meal and then headed down.. even at resting its still 180 without eating so I really have to watch things awhile. I'm not sure what effect the other drugs and problems have on the blood sugar now but I cut out just about everything.

I do like quinoa but will wait to have any grains until I get things balanced under 140.

I bring soba and sobako back from Japan which is usually not a problem. Next time you go there you need to try the kibi, awa and hie types of milets. Really great taste but now Ill need to check carbs.

after only a few days i knw i still have a lot to learn and do appreciate all the help.

the way you ordered it sounds like your on Kaiser -- i usually order the 90 day 3 for 2 thing.

take care

From a blood sugar standpoint, nuts have carbs but they also have alot of fiber and are slower digesting so don't spike the blood sugar rapidly. I still have to watch the amount. From a GI standpoint, I used to not be able to tolerate nuts and seeds but now my body is OK with it, I do still have to watch it in the evening sometimes, my system is still a little sensitive at times. I'll often have a 1/4 or 1/3 cup for my afternoon snack. I'll sometimes have a small piece of cheese as an after dinner snack. I really do have to give myself enough time to digest before bed.

Some carbs will spike the BG up faster and more than others. You can conduct experiments with your meals and meter and see how your body reacts. You can check 1 hr. after a meal and again at 2hrs. to see what happens. I now no longer consume any grains, except a little quinoa on occasion, but this is what I found in the past. With rice, I found that the longer the grain the less spike-same for brown or white. Some say that brown is better overall, but I didn't find that much difference with the shortgrain Japanese brown-portion was the same as the white. With the whole grains like quinoa, brown rice and others, you may find that your BG goes down at 2nd hr. and may get a rise again 3 or 4 hours after eating(I tested and found that I did) because they are slower digested. If you find that to be the case you may want to think about timing your next meal so that you are not doubling up your BG with that rise plus the rise you're getting from the new meal. Portion control also helps minimize the effect of that rise. If your BG goes way up with any grain, you can try that meal again with a smaller portion(half) of the same grain and see what kind of a difference it makes. Many find that sweet potatoes are less spiking than other potatoes and waxy less than baking. I refer to the orange fleshed American sweet potatoes-Satsumaimo spiked me way high! Quinoa has alot of protein and seems to be much less spiking than the rest, it still seems to follow that pattern that I mentioned with the whole grains. It's really important to balance the carbs with enough protein too as protein slows down the action of the stomach and helps slow the carbs down too. I always eat protein for the first few bites rather that just jumping into the carbs. Here's a tip about testing supplies. I recently found that if I order supplies through my insurance-90 day supply at a time, I end up getting the supplies at a cost equal to buy 2 get one free.

[ranger]

I was dx with diabetes first, and was put on metforman. First AIC was 13 1/2! At first, I thought the meds were making me sick, but I had to take them. For months, I was sick, and finally switched to glyburide. That med was more effective - it brought my AIC down to 8. But, I was still sick all the time, and it was getting worse. I got to the point where I could'nt leave the house because I needed to be near a bathroom. And, I got down to 84 lbs. I decided that I would do anything to get off the meds ( still thinking that was the cause of all the sickness) and got books on reversing diabetes I chose one that was the opposite of the ADA diet and started with an elimination diet of rice and bananas. After only 3 days, my symtoms were 75% GONE! I kept a food journal and went back to find a common thread, and it was gluten. I spent a couple of months on and off gluten(for various reasons) I became gluten free Jan.1 Now, I am up to 97 lbs. and feel sooooo much better.I'm going out more -even back to gardening. My blood sugar readings are NORMAL, even though I cut my meds in half. My fasting bs levels are between 70 to 100 everyday. This morning, in fact, My reading was 47! I thaught what's with that? So, I popped a piece if candy in my mouth and didn't take my meds. I hope after all the diabetic stuff, now do I have to worry about LOW blood sugar! Yikes. I find the diabetec diet and the gluten-free diet are not that hard to deal with. Just eat healthy wholesome gluten-free food and easy on the simple carbs. I eat something sweet every day, and 6 small meals a day. I do eat more protien than I used to, at least a small portion at the 3 main meals. And, it just keeps getting better and better and better....................

[kaiess]

My son was diagnosed with Type 1 diabetes in 2004 and is in the process of being diagnosed with Celiac now. He has no symptoms of Celiac and was only caught last year when his Celiac screening (endo screens all the Type 1 kids) TTG came back high. THey scoped, it was negative. They did the genetic tests and he has both genetic markers. Did another TTG, it was WAY higher and then waited another 6months and his TTG was so high it was off the scale (over 222.6 with a normal being under 20). They said he has it b/c they have never seen someone with a TTG over 200 have a negative scope. His scope is the end of July this year.

His symptoms of Type 1 diabetes were quite sudden onset of thirst and urination (noticed it over about a week with real obvious signs the last 2 days before I made the doc test him for it). We have lots of auto-immune disorders in our family....a few Type 1 diabetics, Psoriasis like crazy, MS, hypothyroidism galore, and rheumatoid arthritis.

I have noticed his blood sugars going crazy at times but then again he is a 9 year old boy who is going through growth spurts, plays soccer and swims competitively. Not one day is the same for us ever so we can't compare day to day to begin with. With us we've notices lots of unexplained highs over the last few months and foods he ate at supper hitting his blood sugars in the middle of the night when before they would affect him late evening. I'd be curious to see the changes once we change to gluten free diet. We also use a continuous glucose monitoring system so it's great for seeing when foods affect him.

Kathy, mom to Jakob, 9

[kenlove]

Thanks Ranger

only been a this a week, at least with the machine to check the glucose. My numbers run from 147 to 298 and bounce around all day regardless if I eat or not. I hate the meds too and looking into all sorts of alternatives.

Its great things keep getting better for you. MY case was somewhat opposite in terms of weight. After going gluten-free 3+ yers ago I gained close to 100 lbs which the doc speculates what caused the diabetes although I knew I could only run from genetics for so long.

good luck

ken

I was dx with diabetes first, and was put on metforman. First AIC was 13 1/2! At first, I thought the meds were making me sick, but I had to take them. For months, I was sick, and finally switched to glyburide. That med was more effective - it brought my AIC down to 8. But, I was still sick all the time, and it was getting worse. I got to the point where I could'nt leave the house because I needed to be near a bathroom. And, I got down to 84 lbs. I decided that I would do anything to get off the meds ( still thinking that was the cause of all the sickness) and got books on reversing diabetes I chose one that was the opposite of the ADA diet and started with an elimination diet of rice and bananas. After only 3 days, my symtoms were 75% GONE! I kept a food journal and went back to find a common thread, and it was gluten. I spent a couple of months on and off gluten(for various reasons) I became gluten free Jan.1 Now, I am up to 97 lbs. and feel sooooo much better.I'm going out more -even back to gardening. My blood sugar readings are NORMAL, even though I cut my meds in half. My fasting bs levels are between 70 to 100 everyday. This morning, in fact, My reading was 47! I thaught what's with that? So, I popped a piece if candy in my mouth and didn't take my meds. I hope after all the diabetic stuff, now do I have to worry about LOW blood sugar! Yikes. I find the diabetec diet and the gluten-free diet are not that hard to deal with. Just eat healthy wholesome gluten-free food and easy on the simple carbs. I eat something sweet every day, and 6 small meals a day. I do eat more protien than I used to, at least a small portion at the 3 main meals. And, it just keeps getting better and better and better....................

[kenlove]

Hi Kathy

Thanks for sharing. I wonder how often celiac comes before diabetes or diabetes before celiac.

Tell Jakob we hope to see him in the olympics!

My son was diagnosed with Type 1 diabetes in 2004 and is in the process of being diagnosed with Celiac now. He has no symptoms of Celiac and was only caught last year when his Celiac screening (endo screens all the Type 1 kids) TTG came back high. THey scoped, it was negative. They did the genetic tests and he has both genetic markers. Did another TTG, it was WAY higher and then waited another 6months and his TTG was so high it was off the scale (over 222.6 with a normal being under 20). They said he has it b/c they have never seen someone with a TTG over 200 have a negative scope. His scope is the end of July this year.

His symptoms of Type 1 diabetes were quite sudden onset of thirst and urination (noticed it over about a week with real obvious signs the last 2 days before I made the doc test him for it). We have lots of auto-immune disorders in our family....a few Type 1 diabetics, Psoriasis like crazy, MS, hypothyroidism galore, and rheumatoid arthritis.

I have noticed his blood sugars going crazy at times but then again he is a 9 year old boy who is going through growth spurts, plays soccer and swims competitively. Not one day is the same for us ever so we can't compare day to day to begin with. With us we've notices lots of unexplained highs over the last few months and foods he ate at supper hitting his blood sugars in the middle of the night when before they would affect him late evening. I'd be curious to see the changes once we change to gluten free diet. We also use a continuous glucose monitoring system so it's great for seeing when foods affect him.

Kathy, mom to Jakob, 9