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Celiac Disease

Nyxks

Nyxks

Well-Known Member
Messages
292
Location
Toronto
Type of diabetes
Type 1
Treatment type
Insulin
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Discrimination based on gender, age, medical conditions, etc.
Wondering how many other's on here deal with this and being Diabetic (I know its more common with T1 then T2 but still).

I've been dealing with it for just over a year now, really a year and a half but only seriously for a year (ya 6 months of saying are you use? I don't have the classic sighs/reactions how can it be?), wondering how other's have dealt with getting told they have Celiac (how did you find out) and how things have been for your glucose control since learning and going gluten free.

Since really taking action I've gone from an a1c of 9.8 to 7 without any change in eating (save the obvious of no gluten) weight's always been an issue thanks to PCOS so its not something i've really put my head to, i'll deal with it in time once I get other things settled (like my new insulin to carb ratio and all these blasted lows I'm now dealing with).

It was my endro who clued into the possibility of CD after something he attended or talked to not sure which it was or combo there of, but apparently something about my vegitarian eating development of a dairy allergy and other existing food allergies made him wondering about it, so he had me try GF for 3 months and saw improvement with my a1c (i noticed less trips to the WC and fewer ibs issues). Had me go back eating like normal for 3 months and saw my a1c spike up to 11, was sent for tests and well the phone call to come in to talk getting told that what he had expected was the case really hit me in the face, as I'd never even heard of CD never mind its connection to diabetes (mostly type 1s).

At any rate, I talk with other's else where who have CD yet finding fellow Diabetics well not so common or if it is its parents of T1 kids with CD which means NOTHING what so ever in common. Care to share your stories/experiences with CD and Diabetes? Also have you noticed since going Gluten Free that your numbers are lower then they use to be? or that you have more lows then before?
 
I don't have CD, but do follow a processed food free diet because of IBS/SIBO/Reflux, possible non-coeliac gluten sensitivity and because I have Type 2 and wanted to control my weight and BG.

I actually find it very easy because the turnaround in my health was so dramatic once I cut out all grains and other processed food that I can't imagine ever being tempted to go back to my old way of eating. I feel so much better than I did before diagnosis. Getting my BG under control was also a huge bonus.

It's very common for autoimmune conditions like Type 1 and CD to cluster with others and it wouldn't surprise me at all if PCOS turns out to be more about food than about hormones (which are controlled by food quality to a large extent) - there are lots of success stories for PCOS on the Paleo/Primal sites like Mark's Daily Apple, Robb Wolf's Paleo Solution and others as the diet is very good at reducing insulin resistance.

The latest thinking following the research of Dr Alessio Fasano (a paediatric gastroenterologist and CD specialist) is that a precursor to all autoimmune diseases is intestinal permeability - if you go on pubmed and search for "intestinal permeability + {your disease}" you'll be amazed at the number of entries.
 
I was diagnosed last October due to the skin rash that can come with it. Never even crossed my mind I could have it even though had felt dreadful for a very long time and had a lower 6 A1c for many years. Diet wise I haven't had to make many changes as have never eaten pasta etc. Only real change was the bread which I now buy and is 13 carbs a large slice. Coeliac disease is autoimmune though so it's not a surprise that many type 1's have it as an added bonus.

Edited to add type 1 for 49 years
 
Last edited by a moderator:
Nyxks said:
Wondering how many other's on here deal with this and being Diabetic (I know its more common with T1 then T2 but still).

I've been dealing with it for just over a year now, really a year and a half but only seriously for a year (ya 6 months of saying are you use? I don't have the classic sighs/reactions how can it be?), wondering how other's have dealt with getting told they have Celiac (how did you find out) and how things have been for your glucose control since learning and going gluten free.

Since really taking action I've gone from an a1c of 9.8 to 7 without any change in eating (save the obvious of no gluten) weight's always been an issue thanks to PCOS so its not something i've really put my head to, i'll deal with it in time once I get other things settled (like my new insulin to carb ratio and all these blasted lows I'm now dealing with).

It was my endro who clued into the possibility of CD after something he attended or talked to not sure which it was or combo there of, but apparently something about my vegitarian eating development of a dairy allergy and other existing food allergies made him wondering about it, so he had me try GF for 3 months and saw improvement with my a1c (i noticed less trips to the WC and fewer ibs issues). Had me go back eating like normal for 3 months and saw my a1c spike up to 11, was sent for tests and well the phone call to come in to talk getting told that what he had expected was the case really hit me in the face, as I'd never even heard of CD never mind its connection to diabetes (mostly type 1s).

At any rate, I talk with other's else where who have CD yet finding fellow Diabetics well not so common or if it is its parents of T1 kids with CD which means NOTHING what so ever in common. Care to share your stories/experiences with CD and Diabetes? Also have you noticed since going Gluten Free that your numbers are lower then they use to be? or that you have more lows then before?
Click to expand...

Hi, I have Coeliac too, 20 months now and type diabetes 1 for 25 years and there are a few of us on the forum with both ,it's called the double whammy!. My symptoms were, upper abdominal pain, mild to severe, nausea, vomiting, diarrhoea, weight loss and feeling SO ill at times and not being able to eat all of my meal because of it. Went to my GP so many times, I thought it was an ulcer( because of certain things going on in my life) not getting anywhere with diagnosis until I suggested being tested for Coeliac, it took months and 2 endoscopies before I was told. It's not to bad a pain when trying to eat out, but it is manageable. Also lots of people have no symptoms at all. My dad's GP has Coeliac disease, but she is not diabetic, also my children and siblings were advised to be tested as it's an auto immune condition. With best wishes
 
Hi, I had my test done at the beginning of June and told last week that it's definitely coeliac.Son was diagnosed in February this year and was tested due to that, had no symptoms as such. GP thinks I've probably had it for years and it could be the reason for my slightly weird blood sugars, waiting to see both diabetic nurse or consultant and gastroenterologist. Main thing I've found is that a lot of gluten free foods are high carb. It's still all new and I'm trying to get my head round the fact I'll probably have to alter my carb ratios and possibly basal rate of insulin as my gut heals. I am lucky in that I have a pump. Any tips and suggestions would be appreciated.
Maybe we need a double whammy club!


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JANROU said:
Hi, I had my test done at the beginning of June and told last week that it's definitely coeliac.Son was diagnosed in February this year and was tested due to that, had no symptoms as such. GP thinks I've probably had it for years and it could be the reason for my slightly weird blood sugars, waiting to see both diabetic nurse or consultant and gastroenterologist. Main thing I've found is that a lot of gluten free foods are high carb. It's still all new and I'm trying to get my head round the fact I'll probably have to alter my carb ratios and possibly basal rate of insulin as my gut heals. I am lucky in that I have a pump. Any tips and suggestions would be appreciated.
Maybe we need a double whammy club!


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Click to expand...

My insulin needs are more stable with very few hypos now, carb ratios haven't changed though. Easiest option is to cook from scratch :)
 
Hi, I am gluten sensitive, not the same thing as CD but gluten is a problem. Yes gluten free foods are very high carb, but if you can use gluten free flour and mix it 50/50 with coconut flour, or almond flour, you can get respectable results for a low carb treat once in a while. Because bread is always an issue, I do a gluten free loaf and slice and freeze it, for the odd occasion when I really need a slice of bread, but don't bother with all the other gluten free stuff and its too carby. I think that there are many people out there that are gluten sensitive, even if they do not go on to develop CD, unfortunately CD usually only shows up on endoscopies in the very late stages of the disease, when loads of damage has already been done. You will really need your wits about you re gluten, its in nearly everything, unless you grow your own and cook from scratch.
 
I have coeliac and type 1 but I got coeliac 4 years before type 1 which I found out almost a year ago that I have, it is a pain sometimes when out on eating, especially going abroad.

Thanks

Steve


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I'm wondering whether that's what I'm experiencing? I'm getting pains in my stomach, above my belly button and an feeling sick a lot. I lchf so not much glutton anyway??
 
@Harpar I do agree it is in a world of a lot of things and a lot of items people might not think of like Mushrooms (not all but wheat is one of the cheapest methods to grow them for the commercial market in some areas of the world), liqurish, soups bases (chicken and beef stock), a LOT of vegetarian fake junk uses gluten to make the item taste/texture closer to what its trying to emulate, and the list goes on.

I was doing a lot of home cooking and baking before CD because of other allergies (dairy and egg mostly) I'd learned a lot of alternative vegan methods of baking that use various flour combos other then wheat, so when told about CD I was a little skeptical since it wasn't something I ate on a day to day basis.

I can't use coconut flour or any nut flour do to allergies so don't know about their ratios but I do use a lot of Teff, Sorghum, Millet, Amaranth and a few other flours in my baking and starch wise I use tapiaoca and on occasion corn with gar gar gum
 
@stevey012 how to you find it being an issue traveling abroad? I've not traveled outside of North America as yet (planning a trip to Ireland n the Isle of Man in 5 years time (need to save up for it) I've not had issues traveling around the US or Canada with CD always find food I can eat (but I also tend to eat strict vegitarian do to other allergies making is safer to do so (in many cases).
 
@JANROU My wife is waiting to have herself tested because her sister was diagnosed two years ago, we don't think she has it but since one sister has it its been recommended that everyone get tested and since she's been living gluten free along with me they are going to have to do a genetic test instead of the standard (should be paying for the DNA testing but because of existing medical issues - she's epileptic its getting covered, thankfully).

I hear you on the abnormal glucose readings that is what as I said was the trigger point for my endro thinking I might have it, my carb to insulin ratio actually did change its settled in at 1:5 tad high for my liking but its been keeping my levels stable like nothing has in the past and we do notice that when I get glutened that the ratio goes out the window.

Its funny I've noticed that the processed gluten free stuff is higher carb, I don't tend to buy it because almost nun of it is allergy free so just not possible to even think about buying (most contain eggs and or dairy). I find baking from scratch to be the best option and cooking from scratch might take longer and mean you need to cut time out of a busy week to do a weeks worth of baking but long run its worth it (I cook and bake for a family of 4).

Another things I've learned is that if you are the only GF and the primary cook its easer to make the family go GF and only have a out of the way area for them to stack their gluten containing items (keeping separate condiments that are well marked, etc) that you don't have to be around or go near (like having it in another room that you just don't worry about going into - setting up an area there for them to make their gluten food if necessary, not always pratical but its what I know some do and we do it to a degree).
 
DonnaC-T said:
I'm wondering whether that's what I'm experiencing? I'm getting pains in my stomach, above my belly button and an feeling sick a lot. I lchf so not much glutton anyway??
Click to expand...
If you are gluten sensitive you will only need a very small amount to make you feel ill, the reaction can take many forms from headache, bloating, depression, constipation, diarrhoea, muscle or joint pain, skin rashes etc. etc. the list is endless. Check out reports by Dr Fasano, Dr Vojdani, Dr Perlmutter, Dr O'Brian etc. etc. If you are coeliac then the reaction can be extremely severe and its causes further long term damage.
 
Nyxks said:
@JANROU My wife is waiting to have herself tested because her sister was diagnosed two years ago, we don't think she has it but since one sister has it its been recommended that everyone get tested and since she's been living gluten free along with me they are going to have to do a genetic test instead of the standard
Click to expand...
Nyxks said:
(should be paying for the DNA testing but because of existing medical issues - she's epileptic its getting covered, thankfully).

I hear you on the abnormal glucose readings that is what as I said was the trigger point for my endro thinking I might have it, my carb to insulin ratio actually did change its settled in at 1:5 tad high for my liking but its been keeping my levels stable like nothing has in the past and we do notice that when I get glutened that the ratio goes out the window.

Its funny I've noticed that the processed gluten free stuff is higher carb, I don't tend to buy it because almost nun of it is allergy free so just not possible to even think about buying (most contain eggs and or dairy). I find baking from scratch to be the best option and cooking from scratch might take longer and mean you need to cut time out of a busy week to do a weeks worth of baking but long run its worth it (I cook and bake for a family of 4).

Another things I've learned is that if you are the only GF and the primary cook its easer to make the family go GF and only have a out of the way area for them to stack their gluten containing items (keeping separate condiments that are well marked, etc) that you don't have to be around or go near (like having it in another room that you just don't worry about going into - setting up an area there for them to make their gluten food if necessary, not always pratical but its what I know some do and we do it to a degree).
Click to expand...

Hi just saw this and can I ask a question? is it your wife that is living gluten free with you? because to be tested for Coeliac disease you must eat gluten or the test would come back as a false negative, so gluten, wheat, Rye, barley and oats must still be eaten ( In a healthy person the Villi in the stomach would be vertical( upright) and in a Coeliac the Villi are flat( horizontal) meaning possible extensive damage and the villi cannot process the nutrients from the food. I hope the test will be a good result for your wife. With best wishe.
 
Nyxks thanks for your comments. My ratios at the moment are 1 to 16 breakfast and lunch and 1 to 18 at tea or after. Think I'll need to start a food diary and do lots of tests to see if anything changes.



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