three auto conditions

[briantaffy]

How do folk cope with having 3 auto-immune conditions/ Mine are T1D, underactive thyroid and dermatitis herpetiformis.

 

[Engineer88]

Snap, T1 Hypothyroid and coeliac.

just get on and do it really. I need routine to remember my tablets but gluten free is a way of life now.

 

[carol43]

T2, under-active thyroid and Raynards. Just have to live with it.

 

[h884]

Hi Brian,

There appears to be quite a few of us in this club. I have an underactive thyroid, rheumatoid arthritis and colitis. They are also now questioning whether I may have type 1 rather than type 2 diabetes.

It does often happen that autoimmune conditions go together.

 

[Robinredbreast]

Type 1, Coeliac, Oral Lichen Planus and Osteoporosis (which is on the fence at the moment)
You just get on with it and hope for a long and active life

 

[Deleted Account]

T2, under-active thyroid and Raynards. Just have to live with it.

I have had Raynaud's for as long as I can remember and never thought of it as an autoimmune disease so just looked it up.
From what I now understand
"Secondary Raynaud phenomenon should be distinguished from primary Raynaud phenomenon (Raynaud disease). They are distinct disorders that share a similar name. Raynaud disease is characterized by the occurrence of the vasospasm alone, with no association with another illness. Secondary Raynaud phenomenon is a designation usually used in the context of vasospasm associated with another illness, most commonly an autoimmune disease."
I guess I have primary Raynauds as I have had it at least 30 years longer than type 1.

Thanks for teaching me a little more about my condition.

 

[JohnEGreen]

Wierd aint it I have Myasthenia gravis taking preds as a therapy for this caused diabetes, and I thought that was it but I also have Asthma not an auto-immune condition and two abdominal aortic aneurysms also not an auto-immune condition, but it now seems there may be in both conditions an auto-immune element who would have thought it not me any way.

https://www.ncbi.nlm.nih.gov/pubmed/11795304
https://www.ncbi.nlm.nih.gov/pubmed/20477126

 

[Indy51]

How do folk cope with having 3 auto-immune conditions/ Mine are T1D, underactive thyroid and dermatitis herpetiformis.

Interesting that you give the diagnosis dermatitis herpetiformis as that appears to be a manifestation of coeliac disease. I hope for your sake that you're following a gluten free diet

 

[Engineer88]

Interesting that you give the diagnosis dermatitis herpetiformis as that appears to be a manifestation of coeliac disease. I hope for your sake that you're following a gluten free diet

Its the same treatment but very different diagnosis it seems?

 

[Brunneria]

My understanding is that once you have one AI disease, then the odds increase that you will develop a second, and then a third.
Such a lovely thought.

If anyone had asked me this question 6 years ago, I would have said I had none.
But it turns out that I have had psoriasis for years, am non-coeliac gluten intolerant (which is still an AI reaction) and the knock on joint issues are AI too.

T1 diabetes is definitely AI, but there is a question mark over T2, which is not resolved to my satisfaction (yet). The inflammatory reactions that are often involved are AI, but there are so many different sub-types of T2 that some may be, and some not.
https://www.ncbi.nlm.nih.gov/pubmed/23835371

 

[Indy51]

Its the same treatment but very different diagnosis it seems?

I'm not really sure - everything I've seen implies that the skin condition is a dead giveaway of underlying coeliac, though admittedly I mostly skimmed the search results. What scares me is that maybe the solution hasn't been made plain.

Was listening recently to an interview with someone who was labelled many times in childhood as having "failure to thrive" but didn't seem to get diagnosed with coeliac until much later - seems insane when the diagnosis of "failure to thrive" is synonymous with coeliac. The woman went through years of suffering as a result

 

[Brunneria]

I'm not really sure - everything I've seen implies that the skin condition is a dead giveaway of underlying coeliac, though admittedly I mostly skimmed the search results. What scares me is that maybe the solution hasn't been made plain.

Was listening recently to an interview with someone who was labelled many times in childhood as having "failure to thrive" but didn't seem to get diagnosed with coeliac until much later - seems insane when the diagnosis of "failure to thrive" is synonymous with coeliac. The woman went through years of suffering as a result

Yeah.
(apologies, because this is somewhat off topic!)
But I brought home a puppy who had 'failure to thrive'. Not much appetite, not much joi de vie, and very slow growth (basically a runt). I changed him to a grain-free diet and he improved dramatically, then to a RAW diet and he flourishes.
Now when he eats anything containing gluten (like a dropped crumb, or some idiot gives him a 'treat' when I am not watching), he gets colitis. Which means 3 days of trauma for the whole family.

So basically, it isn't just humans! But it is soooo much easier to spot these things in a dog, with a more restricted diet, and no human cultural expectations and endless food variety.

OK, back on topic now

 

[JohnEGreen]

Its the same treatment but very different diagnosis it seems?

And both with the same cause an AI reaction to gluten.

 

[Engineer88]

And both with the same cause an AI reaction to gluten.

Yeah its just strange that coeliacs get very little of the skin symptoms and DH sufferers get few (?) of the gut symptoms

 

[DCUKMod]

A year or so ago, when I saw an Endo for some temperature dysregulation issues, his comment was that for someone like me without apparent AI issues (in the light of a family history littered with multiples for each family member), I should adopt a gluten-free diet, on the basis folks with AI conditions tend to do well on it. He receommends a GF diet for those with AI issues as a matter of course, although allegedly only modest numbers adopt that suggestion.

He does feel that it's a matter of time until I am diagnosed with something AI (It's so good to have something to look forward to !), and also that whilst my Coeliac Screening was negative, that could easily have been because I was already a long-term low carber and had already turned my back on the big gluten hitters.

I do very well gluten-free, but now, having cut out the less obvious gluten, I experience rather dramatic symptoms if I slip up, as I did a couple of weeks ago at a Conference.

 

[SueJB]

TD1, lazy thyroid, soft bones, asthma and a few more
Can't change it so just get on with life being as jolly as I can and giving myself a good talking to when things begin to build

 

[JoKalsbeek]

How do folk cope with having 3 auto-immune conditions/ Mine are T1D, underactive thyroid and dermatitis herpetiformis.

Hashimoto's, Sjögren's and T2 right here. Every one of them was a blow, but T2 was the only one that sent me spiralling into a deeper depression. (No doubt partially caused by my bloodsugars being what they were at the time). I just take it one day -or hour- at a time, and do whatever I need to... Prioritise what gets treated first. I do have to say that going keto for the T2 also made a difference for my Sjögren's, (less inflammatory foods) but I don't know if that's an option for a T1.

 

[JoKalsbeek]

How do folk cope with having 3 auto-immune conditions/ Mine are T1D, underactive thyroid and dermatitis herpetiformis.

(And I cope by trying to do things that make me happy. Like going out on the weekends to things where i can photograph my little heart out, but where it's not a disaster if I leave quickly because my body gives out. It's easier to carry all these burdens if you're kind to yourself in the meantime.)

 

[Christine22080]

Under active thyroid, Ehlers-Danlos type 3

Chin up and forward, have to think positive, that's the only way. My mobility is very restrictive, so I am tracing my Family Tree (since 1980), active on social media, reading.

 

[briantaffy]

Snap, T1 Hypothyroid and coeliac.

just get on and do it really. I need routine to remember my tablets but gluten free is a way of life now.

Occasionally I forget to check my bgm. If I eat "illegal" food, so long as it is a minor transgression, then my rash does not blow up much at all. I can sometimes "hide it" by eating near other legal food. I have to toast most g-f bread to make it palatable. NB re my T1, exercise seems nowadays to have less of an effect on reducing my amount of quick insulin.