Gluten intolerant, think I might be dairy/lactose intolerant too ☹️

[diabetic Disney fan]

Hi, I'm a type 1 diabetic and have been for nearly 14 years.
Last year I felt so ill around Easter time. Constantly feeling sick whenever I ate, not feeling right at all, tired, had little energy (and I am usually very energetic), constant hypos and lost weight. Went to the doctor's and at first they didn't even give me a face to face appointment and said it was all psychological. I finally got through to a female doctor and she saw me and wasn't any help at all, gave me some sachet things as I was also struggling to go to the toilet, and sent me for a blood test (plus my annual diabetic bloods). They all came back normal and that was the end of that. I read up online and found these symptoms could be caused by gluten intolerance (which wouldn't appear in a blood test), so I eliminated gluten from my diet for about a week and felt so much better! I then tried eating a bit of gluten to see if it was this, and I started to feel ill again. So I continued to go gluten free and here we are today, self diagnosed gluten intolerance. Everything went back to normal, blood sugars were fine and everything. Recently I have started having similar slightly less intense symptoms (but only when I either eat cheese or have cereal (gluten free) with milk). I cannot find much about type 1 diabetes, gluten intolerance and lactose/dairy intolerance and am just confused. I have read that if you have coeliac disease you are likely to become lactose intolerant, but my coeliac test came back completely normal last year (and I am not going through the trauma of eating gluten for 6 weeks to find out). Any advice on the lactose/dairy intolerance idea would be greatly appreciated .

 

[Melgar]

Hi and welcome to the forum @diabetic Disney. I have coeliac. I am unable to tolerate any gluten. Consuming even a tiny amount or a cross contamination will cause, stomach ache, nausea / vomiting, bloating, IBS and GERD. I also get a gluten rash along with all the digestive symptoms. So I have an immune reaction to gluten on my skin and in my hair. Since going fully gluten free all my symptoms disappeared. We have a gluten free house. So no gluten products at all. To lessen the chance of glutening myself I cook my meals from scratch. My daughter has coeliac as well. She couldn’t complete the gluten challenge without throwing up. Even the small amount of gluten she consumed she produced the autoantibodies.

You could have non coeliac gluten sensitivity which produces all the same digestive symptoms as coeliac, but it Is not an autoimmune disorder.

And oddly I am also lactose intolerant. I can tolerate a very small amount of lactose before I get sick. It gives me IBS usually. Plus diarrhea. Those are my main symptoms. I have more symptoms with my gluten intolerance than my lactose intolerance.

 

[Tony337]

Hi
I have coeliacs and unfortunately coeliacs and diabetes are quite common.
I also have bile acid malabsorption which leads to bad guts.
Cheese is acidic so try cutting out the cheese for a bit just to see what happens.

I discovered Kefir recently and i'm not lactose intolerant.
I take a couple of mouthfulls out of a bottle twice a day and it improves my stomach.

These are just thoughts and ideas that work for me.

I wish you well.

Tony

 

[greekqueen]

Hi, I have been to lactose intolerant for about a decade,last year I tried lactase tablets and I had immediate results from taking them.
I take them 10 minutes before I eat, no more episodes of feeling sick, getting cramps and having to empty my bowel. I rarely get these episodes now. I also suffer from reflux, so sometimes it can get all confused together as you reach your forties these added illnesses seem to occur, but I would highly recommend trying these tablets. I just buy boots own make and put them in a little tin and take them whatever I go out too. They have changed my life!

Lila

 

[Melgar]

@greekqueen As I mention above I have coeliac and I’m lactose intolerant. I tried the lactase tablets after a friend suggested them to me. Within minutes I was violently sick to the point that I was projectile vomiting. At the time I wasn’t 100% sure it was the lactase tablets. So a few days later I had another tablet, just to see if it was the lactase pill. Same thing, violently sick. I googled it and apparently it’s a thing. On Reddit there are numerous people who have the same symptoms after taking a lactase pill. That seems to be the only site that mentions the vomiting. When you look at the listed side effects for lactase these reactions are not listed, just the possibility of an allergic reaction.

 

[Lyndseyb]

Hi, I'm a type 1 diabetic and have been for nearly 14 years.
Last year I felt so ill around Easter time. Constantly feeling sick whenever I ate, not feeling right at all, tired, had little energy (and I am usually very energetic), constant hypos and lost weight. Went to the doctor's and at first they didn't even give me a face to face appointment and said it was all psychological. I finally got through to a female doctor and she saw me and wasn't any help at all, gave me some sachet things as I was also struggling to go to the toilet, and sent me for a blood test (plus my annual diabetic bloods). They all came back normal and that was the end of that. I read up online and found these symptoms could be caused by gluten intolerance (which wouldn't appear in a blood test), so I eliminated gluten from my diet for about a week and felt so much better! I then tried eating a bit of gluten to see if it was this, and I started to feel ill again. So I continued to go gluten free and here we are today, self diagnosed gluten intolerance. Everything went back to normal, blood sugars were fine and everything. Recently I have started having similar slightly less intense symptoms (but only when I either eat cheese or have cereal (gluten free) with milk). I cannot find much about type 1 diabetes, gluten intolerance and lactose/dairy intolerance and am just confused. I have read that if you have coeliac disease you are likely to become lactose intolerant, but my coeliac test came back completely normal last year (and I am not going through the trauma of eating gluten for 6 weeks to find out). Any advice on the lactose/dairy intolerance idea would be greatly appreciated .

Hi, i have logged on here solely to respond to you as i have been in this same situation, it’s painful & exhausting, although i am a little further ahead in my journey. Going by what you have written i believe your problem is FODMAPS, your gut can’t digest foods high in fodmaps, things like bread, sweetener, milk even blackberries & apples. If you look online for the low fodmap diet you’ll be very happy There’s a page that lets you search foods to let you know if they are high or low. Hope this helps.

 

[Andie7]

Hi, I don’t normally write on this (or any other) forum because I’m not the greatest writer but I’ve been waiting for someone to say they are coeliac and diabetic (I’m T2) like me as I thought I was the only person in the world with both. I also have Barretts oesophogus. My biggest problem seems to be how on earth to satisfy all 3 conditions, food wise, especially as I don’t seem to suffer with any symptoms at all - the coeliac disease was discovered by chance when I had an M.O.T. blood test and from there the Barretts was discovered (endoscopy), I’ve been a type 2 diabetic for about 2 years and am not managing it very well. I have spoken to dieticians who have not helped me very much because I really don’t like any of the gluten free bread or rolls but I do like some of the cakes - not good for diabetes at all! My life has changed so dramatically since my diagnosis, even going out to eat doesn’t give me any pleasure anymore and the choices are so limited. Has anybody got any advice that might help as ’normal’ food is so tempting as I get no symptoms and can’t ever tell if it has gluten in or not, unless I read all ingredients (not always possible). Help if possible please

 

[MissBabs]

Hi, I’m gluten intolerant & type 2. You should really be tested for coeliac disease as this is a very serious condition. My specialist was convinced I was coeliac my conditions where so severe, blood tests only being successful at diagnosing 70% of coeliacs, he then went on to arrange a camera endoscope but I’m pleased to say I’m definitely not coeliac. Anyway I’m saying all this because people do mock sometimes those of us who are intolerant but until you’ve experienced it you have no idea. I am neither dairy or lactose intolerant but it is very common to be lactose intolerant if you are gluten intolerant.

 

[EllieM]

Hi @Andie7 and welcome to the forums. There are actually quite a lot of diabetics with coeliacs (it's particularly common for T1's as autoimmune diseases love company and about 6% of T1s have it, while T2s have it at the general rate in the population)

Diabetes and Celiac Disease | Celiac Disease Foundation

The estimated prevalence of celiac disease in patients with type 1 diabetes is approximately 6%. Most patients with both conditions have asymptomatic celiac disease, or symptoms that may be confused for symptoms of their diabetes.

celiac.org

I'm going to tag @Melgar who is coeliac I believe.

(Do you have or suspect lactose intolerance as well ? If not would you like us to move your post and replies to it to their own dedicated thread?)

 

[Melgar]

Thanks for the tag @EllieM

 

[MrsA2]

even going out to eat doesn’t give me any pleasure anymore and the choices are so limited. Has anybody got any advice that might help as ’normal’ food is so tempting

I found going very low carb, keto or even carnivore easy as I don't need special replacement foods. Breads and cakes are no longer part of my meals. I simply eat tasty filling natural foods - meats, fish, eggs, dairy, veg, olives nuts etc.
I can usually find something on a menu. The other night in the pub I had chicken and spinach curry but swapped the rice for a serving of vegetables for example. At a cafe today when everyone else was on cake and scones I had scrambled eggs on toast, but left the toast.
Eating out is really for the social aspect not the food. It wouldn't be the same if no one else was there but you can have a social event without food. Its just thinking differently about it.
I know this sounds difficult and weird (and that's what I thought 5 years ago when I landed on this forum) but now it's normal, easy, simple and my health is so much better. I no longer have ibs for example
(I know nothing about your 3rd ailment, sorry if this story conflicts)

 

[Melgar]

Hi, I don’t normally write on this (or any other) forum because I’m not the greatest writer but I’ve been waiting for someone to say they are coeliac and diabetic (I’m T2) like me as I thought I was the only person in the world with both. I also have Barretts oesophogus. My biggest problem seems to be how on earth to satisfy all 3 conditions, food wise, especially as I don’t seem to suffer with any symptoms at all - the coeliac disease was discovered by chance when I had an M.O.T. blood test and from there the Barretts was discovered (endoscopy), I’ve been a type 2 diabetic for about 2 years and am not managing it very well. I have spoken to dieticians who have not helped me very much because I really don’t like any of the gluten free bread or rolls but I do like some of the cakes - not good for diabetes at all! My life has changed so dramatically since my diagnosis, even going out to eat doesn’t give me any pleasure anymore and the choices are so limited. Has anybody got any advice that might help as ’normal’ food is so tempting as I get no symptoms and can’t ever tell if it has gluten in or not, unless I read all ingredients (not always possible). Help if possible please

Hi there @Andie7 , I have coeliac as does my daughter. I also have the gluten rash . I have been gluten free for just under 3 years now. It made a huge difference. I only get symptoms including the rash if I accidentally consume gluten. My symptoms would be stomach cramps, IBS, GERD, bloating , nausea and alternating constipation and diarrhea. The rash appears in my hair, my lower back, my elbows and my inner thighs. The rash is usually symmetrical appearing on both sides of my body. It is Intensely itchy and it burns at the same time. Apparently, our skin can be attacked as it’s a systemic condition, meaning it can also attack other organs.

My family does have a history of autoimmune disorders. My brother has T1DM. My mother and my maternal grandfather had Rheumatoid arthritis. These are all genetically related conditions from what I have read. I would certainly get yourself tested for T1DM. To be honest my own diabetes seems different from T2 in that what works to bring down blood sugars for T2’s does nothing for my blood sugars, but that is another matter.

We keep a totally gluten free household. We have a separate fridge that guests can use if they bring a product containing gluten into the house. We also have two toasters so there is no cross contamination. My daughter, who lives in LA shares an apartment with two other girls. She was getting so sick from the gluten x contamination that they all agreed to have a gluten free apartment. Which has helped tremendously. There are lots of GF cook books out there. Our cupboards are stocked with GF flours, pastas, most ingredients that you would normally have in your cupboards , but are certified GF. I have gotten use to eating GF. If I fly I get a in flight GF meal . Yes, it can be tough. Especially when you see diners getting delicious deserts and you get a chocolate chip cookie. If I never see a chocolate chip cookie again it would be too soon.

I cook all my food from scratch. I do go out to restaurants, so I take a chance . I enjoy sushi and not so long ago kept getting sick, it turned out the sushi was being contaminated with soy sauce which contains gluten. I read ALL the ingredients on the back of products. I also have an App on my phone called Gluten Free. That is very useful as products can contain hidden gluten.These are the products that are used to make a finished product.

Gluten free products will push up your blood sugars. And GF breads are awful, not all mind. We have a gluten free bakery in the city which is a blessing if you want a treat. I don’t drink, but we get gluten free beer too. Having coeliac is a big pain. My brother asks me repeatedly which would I prefer, coeliac or T1. I always tell him T1 as I am a big foodie. He agrees with me. He’s a chef so he always make me delicious GF meals.
I consider myself genetically susceptible to T1, having coeliac, all it needs is an environmental trigger as we could get it, but I haven’t so far, and I may never get T1, but I do have a weird type of diabetes.

Ed spelling

 

[teresa1966]

Hi, I'm a type 1 diabetic and have been for nearly 14 years.
Last year I felt so ill around Easter time. Constantly feeling sick whenever I ate, not feeling right at all, tired, had little energy (and I am usually very energetic), constant hypos and lost weight. Went to the doctor's and at first they didn't even give me a face to face appointment and said it was all psychological. I finally got through to a female doctor and she saw me and wasn't any help at all, gave me some sachet things as I was also struggling to go to the toilet, and sent me for a blood test (plus my annual diabetic bloods). They all came back normal and that was the end of that. I read up online and found these symptoms could be caused by gluten intolerance (which wouldn't appear in a blood test), so I eliminated gluten from my diet for about a week and felt so much better! I then tried eating a bit of gluten to see if it was this, and I started to feel ill again. So I continued to go gluten free and here we are today, self diagnosed gluten intolerance. Everything went back to normal, blood sugars were fine and everything. Recently I have started having similar slightly less intense symptoms (but only when I either eat cheese or have cereal (gluten free) with milk). I cannot find much about type 1 diabetes, gluten intolerance and lactose/dairy intolerance and am just confused. I have read that if you have coeliac disease you are likely to become lactose intolerant, but my coeliac test came back completely normal last year (and I am not going through the trauma of eating gluten for 6 weeks to find out). Any advice on the lactose/dairy intolerance idea would be greatly appreciated .

I'm a diagnosed type 2 diabetic. Back in early 2019 I self diagnosed lactose intolerant after eating cheese caused unbearable stomach pain twice in a week. So I've been dealing with that for 6 years now. A few months later, I developed gluten sensitivity to eating normal bread. I eliminated wheat from my diet and up until recently, that's been OK. Last November, while mum was having eye surgery, I had hot chocolate with oat milk at Costa and that niggled my stomach a bit. So now I have gluten free oat milk. So now I think I'm oat sensitive too. Good luck.

 

[lizz09]

This is an interesting subject. I seem to go through stages of needing to be dairy/gluten free. I am also T2 diabetic and have fibromyalgia. I can usually do around 6 months of dairy (but not milk at all) before having a dairy free few weeks then I seem to be ok with dairy again. With gluten I usually have to have a few weeks break every year to 18 months. Does anyone else have this sort of experience? Do you think I'm on the slippery slope of being fully dairy/gluten intolerant?

 

[cmt222]

I'm a diagnosed type 2 diabetic. Back in early 2019 I self diagnosed lactose intolerant after eating cheese caused unbearable stomach pain twice in a week. So I've been dealing with that for 6 years now. A few months later, I developed gluten sensitivity to eating normal bread. I eliminated wheat from my diet and up until recently, that's been OK. Last November, while mum was having eye surgery, I had hot chocolate with oat milk at Costa and that niggled my stomach a bit. So now I have gluten free oat milk. So now I think I'm oat sensitive too. Good luck.

Hi everyone I'm T2 Over time I have become gluten intolerant I have also become highly allergic to Dairy so much so I have to carry epipens I have been informed by a consultant that diabetes can be linked to autoimmune and extreme allergies I have to take 4 antihistamines a day and regularly can be come allergic to something at the drop of a hat why we have not been informed of this before I'm not sure as it seems quite common with diabetics I also have polycystic ovaries and apparently all of this is interconnected I cook from scratch too Nothing I haven't made touches my lips after waking up from anaphylaxis in casualty it's just not worth it

 

[Jammy42]

Hi, I'm a type 1 diabetic and have been for nearly 14 years.
Last year I felt so ill around Easter time. Constantly feeling sick whenever I ate, not feeling right at all, tired, had little energy (and I am usually very energetic), constant hypos and lost weight. Went to the doctor's and at first they didn't even give me a face to face appointment and said it was all psychological. I finally got through to a female doctor and she saw me and wasn't any help at all, gave me some sachet things as I was also struggling to go to the toilet, and sent me for a blood test (plus my annual diabetic bloods). They all came back normal and that was the end of that. I read up online and found these symptoms could be caused by gluten intolerance (which wouldn't appear in a blood test), so I eliminated gluten from my diet for about a week and felt so much better! I then tried eating a bit of gluten to see if it was this, and I started to feel ill again. So I continued to go gluten free and here we are today, self diagnosed gluten intolerance. Everything went back to normal, blood sugars were fine and everything. Recently I have started having similar slightly less intense symptoms (but only when I either eat cheese or have cereal (gluten free) with milk). I cannot find much about type 1 diabetes, gluten intolerance and lactose/dairy intolerance and am just confused. I have read that if you have coeliac disease you are likely to become lactose intolerant, but my coeliac test came back completely normal last year (and I am not going through the trauma of eating gluten for 6 weeks to find out). Any advice on the lactose/dairy intolerance idea would be greatly appreciated .

Hi it's a mind field when comes to intolerance. If we're ceoliac which would be done via blood test but having to eat foods that have gluten in for a while would show if had ceoliacs disease.
Be careful with foods as some have natural gluten in (porridge oats etc...) also check may contains. If have a look on vwoliacs website also if follow Becky Excell on socials she also has website and books which are amazing for ceoliac AND gluten intolerance. I hope this helps a little for you

 

[Melgar]

Hi and welcome to the forum @cmt222. I’m sorry you have developed an allergy to dairy. Sheesh. Allergies are frightening as they can turn life threatening. Dairy is in so much food and that is a large food group that is not available to you, and taking gluten out as well, that makes for a minefield. Have you been tested for coeliac?

 

[lizz09]

No I've not been tested. Doctors have said its unlikely to be coeliac as it only flares up from time to time

 

[Ladybird1]

Hi, I'm a type 1 diabetic and have been for nearly 14 years.
Last year I felt so ill around Easter time. Constantly feeling sick whenever I ate, not feeling right at all, tired, had little energy (and I am usually very energetic), constant hypos and lost weight. Went to the doctor's and at first they didn't even give me a face to face appointment and said it was all psychological. I finally got through to a female doctor and she saw me and wasn't any help at all, gave me some sachet things as I was also struggling to go to the toilet, and sent me for a blood test (plus my annual diabetic bloods). They all came back normal and that was the end of that. I read up online and found these symptoms could be caused by gluten intolerance (which wouldn't appear in a blood test), so I eliminated gluten from my diet for about a week and felt so much better! I then tried eating a bit of gluten to see if it was this, and I started to feel ill again. So I continued to go gluten free and here we are today, self diagnosed gluten intolerance. Everything went back to normal, blood sugars were fine and everything. Recently I have started having similar slightly less intense symptoms (but only when I either eat cheese or have cereal (gluten free) with milk). I cannot find much about type 1 diabetes, gluten intolerance and lactose/dairy intolerance and am just confused. I have read that if you have coeliac disease you are likely to become lactose intolerant, but my coeliac test came back completely normal last year (and I am not going through the trauma of eating gluten for 6 weeks to find out). Any advice on the lactose/dairy intolerance idea would be greatly appreciated .

I've been Type 1 for 62 years and I'm coeliac too but not lactose intolerant. I was told its another autoimmune disease that goes hand in hand with diabetes. Its not that bad, best of luck

 

[Cropwalker]

I had a similar experience just two years ago just after Christmas I started making my own bread that I am told can be particularly high in Gluten . After eating the home made bread I had server bloating , nausea and a lot of wind. I saw my GP and asked for a Celiac test that came back negative , my symptoms reduced dramatically when I cut out gluten but not completely, My GP also did some tests on my faeces and the results showed that I had PEI Pancreatic Exocrine Insufficiency. For this I have to take Creon capsules when eating. It could be worth having this checked for . Although a lot of my symptoms have reduced I still get a lot of wind so I wondered If I had a lactose intolerance…but I love cheese so I have not pursued that any more than thinking about it! Good luck with you diagnosis.