Anyone here with Multiple Auto-immune diseases?

Janetoby

Member
Messages
21
Type of diabetes
Type 1
Is there any other type 1's out there that have been diagnosed with 'Multiple Auto Immune Diseases'?
How did you get diagnosed? What sort of Medical Practitioner did you consult? I feel that I may be have a few different issues going on after 42 years of being type 1, but everything gets blamed only on my type 1 diabetes, and I am told that the government won't just pay for tests because I ask for them. I paid privately to have some testing done for food intolerance, and apparently I shouldn't eat dairy. nuts, eggs, spurilina (added to many foods) , soy., corn syrup. I was only to eat any food 1 x every 4 days. I was going to an ayvedic practitioner for acupuncture for the pain in my legs and feet (has helped) and his advice was to avoid any root vegetables, and only eat chicken, turkey and duck, and gave me a list of foods to eat at least 3 days a week if possible. He told me I should avoid eating the same food more than 2 x per week, and preferably not on consecutive days. I went for the breath testing for food intolerance and tested intolerant to fructose, but my diabetic specialist told me that unless I had constant diarrhea I should still eat fruit. So over the last year or 2 eating is becoming a bit of a nightmare. I have always been fairly slim, but when I tried the LCHF method of eating I got down to 50kg and I am 5'9" so it was a bit light! I also found that I couldn't eat much fat without feeling a bit sick. With the later intolerance testing I now cant have butter or yoghurt or cheese or eggs which were my main fats. So as you can see most of my food is green! I realise I will just have to sort out what foods suit me best personally, but I would like to ascertain where the major problems lie- liver, pancreas, small intestine?? Has anyone had similar issues and found good results? : ) The acronym did make me smile though...
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Bumping this for you @Janetoby

There are people here with other auto immune diseases so hopefully they'll reply. Would you like me to amend your title to catch more eyes?
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Is there any other type 1's out there that have been diagnosed with 'Multiple Auto Immune Diseases'?
How did you get diagnosed? What sort of Medical Practitioner did you consult? I feel that I may be have a few different issues going on after 42 years of being type 1, but everything gets blamed only on my type 1 diabetes, and I am told that the government won't just pay for tests because I ask for them. I paid privately to have some testing done for food intolerance, and apparently I shouldn't eat dairy. nuts, eggs, spurilina (added to many foods) , soy., corn syrup. I was only to eat any food 1 x every 4 days. I was going to an ayvedic practitioner for acupuncture for the pain in my legs and feet (has helped) and his advice was to avoid any root vegetables, and only eat chicken, turkey and duck, and gave me a list of foods to eat at least 3 days a week if possible. He told me I should avoid eating the same food more than 2 x per week, and preferably not on consecutive days. I went for the breath testing for food intolerance and tested intolerant to fructose, but my diabetic specialist told me that unless I had constant diarrhea I should still eat fruit. So over the last year or 2 eating is becoming a bit of a nightmare. I have always been fairly slim, but when I tried the LCHF method of eating I got down to 50kg and I am 5'9" so it was a bit light! I also found that I couldn't eat much fat without feeling a bit sick. With the later intolerance testing I now cant have butter or yoghurt or cheese or eggs which were my main fats. So as you can see most of my food is green! I realise I will just have to sort out what foods suit me best personally, but I would like to ascertain where the major problems lie- liver, pancreas, small intestine?? Has anyone had similar issues and found good results? : ) The acronym did make me smile though...

Janetoby - Were you having specific symptoms when you asked for tests for AI conditions? I only ask this because I have just been tested for a whooooooole bunch of stuff, having been referred to an Endocrinologist.

Having learned some "stuff" cleared off those uber-nasties, and as instructed, gone gluten-free, subject to one further test, I am heading for a Rheumatologist.

The tests are clearly available out there, but not specifically ordered by me. My GP referred me to the Endo in the first place because she didn't have the specialist knowledge to take it forward herself.

For completeness, and clarity; I'm not T1 and my GP and I have agreed that diabetes isn't at the root of every pain, itch or irritation. She's a keeper.
 

Janetoby

Member
Messages
21
Type of diabetes
Type 1
Janetoby - Were you having specific symptoms when you asked for tests for AI conditions? I only ask this because I have just been tested for a whooooooole bunch of stuff, having been referred to an Endocrinologist.

Having learned some "stuff" cleared off those uber-nasties, and as instructed, gone gluten-free, subject to one further test, I am heading for a Rheumatologist.

The tests are clearly available out there, but not specifically ordered by me. My GP referred me to the Endo in the first place because she didn't have the specialist knowledge to take it forward herself.

For completeness, and clarity; I'm not T1 and my GP and I have agreed that diabetes isn't at the root of every pain, itch or irritation. She's a keeper.

I have had trouble with my digestion and bowels for a number of years, and it seems to be getting worse despite modifying my diet a great deal. I also often feel like I have something stuck in my throat. I have had random testing such as thyroid, celiacs, breath testing and gastroscopy/endoscopy but not a lot of stuff together. I would like to have as much testing done at once so the picture is complete instead of snapshots. I have been seeing an auyvedic practitioner who has helped me a great deal, but its like there is still something going on in the background that make me feel unwell. I also now suffer from terrible leg cramps, feel unbalanced, have vision problems apparently related to age not diabetes, am constantly tired and cannot put on any weight. I have been the using the LCHF diet but cannot have too much fat as it makes me feel really unwell. I found through trial and error that I need to have some carbs or I literally cannot function. If I have a breakfast with NO carbs my blood sugar sky rockets?? I have found this site to be full of variable and valuable information in the last year, and wondered if anyone else out there had similar issues. I feel like once you have a label such as 'Type 1 diabetic of 42 years' so one will look any further, and that includes the endo. : (
 

Snapsy

Well-Known Member
Messages
2,552
Type of diabetes
Type 1
Treatment type
Pump
If I have a breakfast with NO carbs my blood sugar sky rockets??
Hi @Janetoby , so sorry to hear you're feeling so unwell. I had Graves' disease as well as my type 1, which is also an autoimmune condition.

I too have a carb-free breakfast - two boiled eggs (actually three this morning as I was really peckish after swimming). If I don't have insulin with them, though, I go high as a kite. I bolus insulin for my breakfast as if I were having 12g CHO. It's the protein in the eggs that otherwise causes my blood sugar to rise. Protein without carbs does this.

:)
 
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DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I have had trouble with my digestion and bowels for a number of years, and it seems to be getting worse despite modifying my diet a great deal. I also often feel like I have something stuck in my throat. I have had random testing such as thyroid, celiacs, breath testing and gastroscopy/endoscopy but not a lot of stuff together. I would like to have as much testing done at once so the picture is complete instead of snapshots. I have been seeing an auyvedic practitioner who has helped me a great deal, but its like there is still something going on in the background that make me feel unwell. I also now suffer from terrible leg cramps, feel unbalanced, have vision problems apparently related to age not diabetes, am constantly tired and cannot put on any weight. I have been the using the LCHF diet but cannot have too much fat as it makes me feel really unwell. I found through trial and error that I need to have some carbs or I literally cannot function. If I have a breakfast with NO carbs my blood sugar sky rockets?? I have found this site to be full of variable and valuable information in the last year, and wondered if anyone else out there had similar issues. I feel like once you have a label such as 'Type 1 diabetic of 42 years' so one will look any further, and that includes the endo. : (

In the NHS you are entitled to a second opinion on anything, provided you can have good reason. Your GP could arrange that for you, if you wanted to consult with another Endo.

The first Endo I saw was very relaxed about my situation, and following my initial consultation his letter to my GP suggested he would "probably never get to the bottom of this", which wasn't the most uplifting reading for me.

When I expressed how I felt about that, my GP asked what I wanted to do; following up with the offer of a second opinion, which I decided to do. She also told me that she could do a named consultant referral, if I know whom I would like to see. It was this second Endo, whom I actually saw privately to get it done quickly, who did the mega raft of tests.

During my initial consultation the Endo #2, recommended I go gluten-free as "many people with AI conditions do well on it". The GF diet hasn't improved the symptoms I went to see him about, but it has made a difference in other areas (I'll spare you the detail on those specifics. Ahem.)

It could be worth a further chat with your GP, about seeing another Endo? Has anyone ever suggested GF to you? I was tested for Coeliac Disease, but the Endo was quite clear, up front, that it would be highly unlikely to show a positive result because I was already low carbing, and avoiding most gluten anyway. He didn't recommend I carb up for the test, because he believed it would be a pretty horrid few weeks.

If I want to discuss something quite complex with my GP, I will often write to her beforehand, so that she has had a chance to read through what's on my agenda, and also it helps me make sure I have covered all the points I want to, rather than leave the consultation only to recall I didn't tell her about x, y or z.

I do hope you get somewhere with it all soon.
 

Janetoby

Member
Messages
21
Type of diabetes
Type 1
In the NHS you are entitled to a second opinion on anything, provided you can have good reason. Your GP could arrange that for you, if you wanted to consult with another Endo.

The first Endo I saw was very relaxed about my situation, and following my initial consultation his letter to my GP suggested he would "probably never get to the bottom of this", which wasn't the most uplifting reading for me.

When I expressed how I felt about that, my GP asked what I wanted to do; following up with the offer of a second opinion, which I decided to do. She also told me that she could do a named consultant referral, if I know whom I would like to see. It was this second Endo, whom I actually saw privately to get it done quickly, who did the mega raft of tests.

During my initial consultation the Endo #2, recommended I go gluten-free as "many people with AI conditions do well on it". The GF diet hasn't improved the symptoms I went to see him about, but it has made a difference in other areas (I'll spare you the detail on those specifics. Ahem.)

It could be worth a further chat with your GP, about seeing another Endo? Has anyone ever suggested GF to you? I was tested for Coeliac Disease, but the Endo was quite clear, up front, that it would be highly unlikely to show a positive result because I was already low carbing, and avoiding most gluten anyway. He didn't recommend I carb up for the test, because he believed it would be a pretty horrid few weeks.

If I want to discuss something quite complex with my GP, I will often write to her beforehand, so that she has had a chance to read through what's on my agenda, and also it helps me make sure I have covered all the points I want to, rather than leave the consultation only to recall I didn't tell her about x, y or z.

I do hope you get somewhere with it all soon.


Thanks, DCUKMod. I am actually in Melbourne, Australia so our health system is slightly different. I have tried several different endos over a about 5 years but the attitude is always ' you are so bad the only thing we can do for you is put you on a pump'. At certain times my family were very involved in motorbike riding, water sport, camping and hiking I actually felt that a pump was not going to be a solution for me. I know a few people with them that love them, and just as many that have tried them and found it did not suit them or their lifestyle. What I am and have been doing is reading a lot, noting things that i want to ask about and I have done myself a little chart listing possible afflictions that I may have ie:MS and writing down the test that are done to verify this. I want to present it to my GP (if he wont help then possible another) and try to get the test done efficiently ie:complete abo scan of pancrease, liver, gall bladder, kidneys etc. I have found a lot of these sort of questions and specifics on this site and through the blogs and forums. I must stress that I am very rarely sick, have hardly spent in hospital and if I died tomorrow I have had a great life. I can't be a train , truck, bus driver or pilot in Australia . My biggest issue is what has now become my 'eating problem' which has been going on for 9 year and the effect this has had on my blood sugars. Yes I can be 'naughty', but am not constantly - does every diabetic want to feel good. With the use of a Libre off and on over the last year I have been able to see the effects of supposedly 'good' foods on my BSL and some of these results are quite eye opening- not all foods work like dieticians would have you believe. I am going to take my list to a GP this week and I will post something after I get some more results so others can learn too. Thank you all very much for your help!