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Diabetic and now have celiacs disease

conniecar

Well-Known Member
Messages
299
Type of diabetes
Type 1
Treatment type
Insulin
Hi
I was just found out today I have celiacs disease. Bit of a blow as I already have epilepsy, an under active thyroid, osteoporosis and a vitamin D absorption problem. Been type 1 for 43 years so I thought when I arrived at 50 this year, I’d seen it all. I’ve had neuropathy pain for six months and the dsn told me there’s a link with celiacs disease? Anyone know about that? Bit fed up as I’ve managed to control my diabetes without involving anyone pretty much just by adjusting my insulin and cabs, now I’ve got to ‘fess up that there’s stuff I can’t eat. Try telling my mother in law I can’t eat a cheese toastie. Any advice, I’d be really grateful.
 
I know it was a shock to me when I got diagnosed with Coeliac at 30 (awesome 30th birthday present lol), and I must admit it did take a lot of getting used to (mainly cos gluten didn't make me feel ill and my other half didn't really believe it cos it didn't make me ill)
If it helps though there are a lot more gluten-free options now than there used to be - though they tend to be a lot more pricey and some tend to be heavier on the carbs so watch out for that, and some are a lot more sugar-heavy as well ......
You may find it useful to take gluten-free bread with you when you go to your mother-in-laws (at least for the time being) and if she wants to do you cheese toasties, insist that you need it done with gluten-free bread, as you are now allergic to gluten, after all would she make you eat peanuts if you had a peanut allergy? (and possibly try using that as a reason)
 

Thanks for that! Great idea. I’ll ambush her by the toastie maker and shout ‘allergy!’ as it sounds more believable than anything else. I’ve just had bone aches and neuropathy pain, but apparently if I’d not had this diagnosis the other stuff would have followed. Just Googled my favourite Indian restaurant and I’m happy to report its all good there. It was bizarre today in Lidl as I was drawn to the Rice Krispies just because they said gf on them. I’ve not eaten Rice Krispies since 1977? You’re right about the carb thing too. Thanks for the advice, this site is great x
 
I’m sorry to hear you have coeliac disease. Was there a specific blood test to get the diagnosis ? I had IBS like symptoms before my type 1 diagnosis, the symptoms completely went away after I switched my diet to low carb (no wheat). Now I eat occasional bread in small amount I have a problem next day. I seem to have problems with gluten as I don’t get the same problem with potatoes. I also have positive thyroid antibody ..... although my thyroid numbers are ok.
 
michita said:
Was there a specific blood test to get the diagnosis ? .
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I know there is a specific blood test for Coeliac - it looks for gluten antibodies I think - therefore you have to eat gluten for a while before hand though cos if you don't eat gluten you wouldn't create said antibodies (I think I had to eat gluten-y stuff for about a week beforehand - but I cant really remember) - I do not know it's official name/code is.
 
Yes I had a blood test due to bone pain, it came back as osteoporosis caused by lack of calcium and vitamin D which is linked to celiacs. Hoping I feel better soon. Thanks for your reply. X
 
Thank you Rokaab, I might ask my GP for the gluten antibody test. I need to think first if it benefit me to find out if I have more autoimmune disease or I find it too depressing and rather not want to know :-D
 
I’ve been upset but it’s not something you can avoid really. Be brave and you will feel better. Everyone will support you on here x
 
You have my sympathy! I was diagnosed with t1d just some months ago. If you are ok with your diabetes, you will be perfect with Coeliac. I have had gluten free diet for 25years (also the thyroid thing) and it is easy compared to making so many guesses all day long with the cabs and units! Lidl (here in Finland)has a very good gluten free Multigrain Bread. It has 38carbs/100g. I hope you can find it in your Lidl also. I mostly bake the bread myself. And have some with me when I leave the house. You never know if you find anything to eat and this gluten free diet is strict. Ethnic restaurants have been a good choice. I just left yoghurt from my breakfast and try to find something as nutritious...
 
michita said:
Thank you Rokaab, I might ask my GP for the gluten antibody test. I need to think first if it benefit me to find out if I have more autoimmune disease or I find it too depressing and rather not want to know :-D
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Michita - There are two initial blood tests. MPO-ANCA and PR3- ANCA .

As has already been mentioned, in ideal terms you should eat decent levels of gluten for about a month prior to the test, in order to guage your reaction to gluten. If you are not eating gluten, it is unlikely the antibody levels would continue to be elevated.

I waas tested a year or so ago, and had the discussion with the Endo beforehand about my LC diet, and plain old not enjoying bread or pasta. We agreed I wouldn't gluten load, provided that I continued with my usual diet.

My antibody levels were modest, but I definitely have gluten issues. I was glutened about two weeks ago; some chicken I had, in a restuarant had a sort of light batter coating to make it crispy (my poor menu choice, in a foeeign country, where the menu wasn't described in detail and where allergy information is not published). I had my usual tummy discomfort for several days, then 5 days inspecting every smallest room around.
 
conniecar said:
Yes I had a blood test due to bone pain, it came back as osteoporosis caused by lack of calcium and vitamin D which is linked to celiacs. Hoping I feel better soon. Thanks for your reply. X
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Conniecar - I feel for you.

I'm not coeliac, but I have issues with gluten and as a result the Endo recmmended a gluten-free diet. As a low carber, I thought it'd be a dawdle, but it took a while to get into it. That pesky gluten is everywhere (it seems).

It can take 3-4 months to feel the beneits of going gluten free, whilst your body recovers from the onslaught it's been under fr a while, so please don't lose faith. I didn't think I'd been having too any symptoms, until they started to clear up.

Personally, I don't buy GF products. I haven't eaten bread, cakes or pasta for years, so no change there. My only exceptions are soy sauce and Worcestershire Sauce.

The GF bread roll served to me with my GF meal on a recent flight could have shored up a building it was so dense. As a diagnosed coeliac, you may e eligible to have a limited amount of "stuff" on prescription.

If you're looking for a forum, a bit like this for Coeliac/GF eating, then Gluten Free Guerillas is worth a look: https://healthunlocked.com/glutenfreeguerrillas

Take it steady.
 

Thank you for the info @DCUKMod. I am on a no bread pasta potatoes rice low carb diet to manage my diabetes. I only eat small portion bread or potatoes only when eating out with friends . So I’m probably not prepared to eat decent amount of gluten for a month when I already know I will have a problem.... it’s quite painful if I’m working next day.

after going gluten free low carb for 3 years now, my tummy problem when occasionally eating bread happened every time without fail I think so it is just what it is whether it is a minor gluten intolerance or an autoimmune thing maybe doesn’t matter so much
 

Hi I'm sorry to read you now have coeliac's, I have coeliac's disease and osteoporosis too. but in time you will get used to it, just make sure you read your GF book and all the information from the hospital, my yearly appointment is in May. I knew something was wrong, as I felt so ill with upper abdominal pain, severe at times, bowel problems, weight loss and vomiting. Tbh, it was a such relief to be diagnosed at long last, with a blood test and two endoscopies, I felt so much better.
You can still have a cheese toastie, just use GF bread, it is better toasted but much smaller slices. The GF thins have less carbs which I'm sure you could toast. It was difficult at first, but now I eat most things, roast dinner's, I make my own curries, rice dishes, meatballs, cottage pie and I love fish, cheese and veg too, but you may need to tweak your Insulin.
I knew about the diabetes and coeliac link and after months and months, I went to my GP and mentioned coeliac and the rest is history.
Take care
 

Also to make sure the bread is toasted in a different toaster, or under the grill, because of possible cross contamination. I have my own toaster, but I think I have only used it a couple of times and that was over 6 years ago now.
 

You could bring it up with your Endo. He/she may suggest going straight to endoscopy to have a peep at your gut. I elected not to go the endoscpoy route when I was undergoing the testing, however, it came up again today talking to my GP.

I was having a chat around some recent bloods, when we both commented on my quite significantly raised Eosinophil levels, which I put down to being mid-gluten reaction. She was pretty shocked when I outlined how my reaction goes (like clock work).

I'm pondering my next steps.
 
Hi @conniecar I have given a lot of thought to auto-immune conditions since they appear in both sides of my family. My maternal grandmother had rheumatoid arthritis for at least the last 20 years of her life. My father had chronic asthma and hay fever. I succumbed to Type 1 as a baby. My sister, who is 59, has had rheumatoid arthritis for several years now. My daughter became coeliac 16 years ago at the age of 18. All these are auto-immune conditions and would have killed sufferers in the past. Because we now have the means to deal with them, the prevalence is infinitely greater since we are able to pass on an over excitable immune system. The whole method of producing ready food, such as quick baked bread is a result of interfering with the kind of wheat grown , which contains a much higher gluten content than that 80 years ago. Not that any of this is a consolation! Understanding this made me more able to come to terms with being the only Type 1 in my family tree, until the present generation - 2nd cousin. Have a look at this link regarding epilepsy, very interesting:
https://jnnp.bmj.com/content/69/6/711

Since reading the above posts I forgot to mention that my mother had cataracts at the age of 51 and an ophthalmologist asked her if there was any diabetes in the family. My mother eventually died from a combination of osteoporosis and Parkinson's.
Meanwhile I hope your life becomes more manageable and tolerable. All the best
 
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I hope it’s nothing major for you to worry about. There are too many conditions to worry about... my diabetes consultants are diabetologists. I thought about asking my GP about switching to seeing an endo when I found out I had positive thyroid antibodies but haven’t yet....
 

We agreed it is almost certainly the result of the "glutening". It's whether I want another test and so on.

If you have T1, Hashis and gluten issues, in your shoes, I'd want some wider AI antibody testing done, and a batch of vitamin testing too. With some AI conditions there can be digestive malabsorption, and with poorer vitamin levels some of our hormones won't work so well.

In UK most Endos are diabetes specialists, but they usually have a decent overview of the other endocrine areas too, although Coeliac is often deals with by the Gastro bods, post diagnosis. Consultants with a specialist interest in thyroid issues are few and far between, unfortunately.
 
My consultant is an endocrinologist with an interest in vitamin absorption, especially calcium and vitamin D. He said all diabetics need to be on a decent multivitamin x
 

Hello, I have been type 1 for 52 yrs and 7yrs ago was also diagnosed with coeliac disease. I am also lactose and dairy intolerant so cheese, etc would not be an option for me. Honestly, it is normal to be dismayed and even panic a bit with the realisation that your diet is restricted and I find it challenging only when needing a sandwich when I’m out and about. Additional planning is required. The range of foods available now in all supermarkets is wonderful and a great range in frozen foods. It is best to limit the intake of some gluten free items because of the sugar content. But you will have support from your dietitian and you’ll soon become a bit of an expert!!!
 
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