Auto-immune diseases

[yorkshiregirl44]

Does anyone know if its possible to a have a complete auto-immune profile done to cover a range of conditions at the same time.

Thanks....

[merissa]

I think Dr myhill does. X

[yorkshiregirl44 in reply to merissa]

Thanks i will look on website.

[Marz]

There are 89 Auto-immune illnesses - according to Prof Yeheudi Schoenfeld - who spoke on the Gluten Summit before Christmas. If you sign up for the follow-up which is due to take place at the end of the month - you will receive a mail with 4 of the speakers from the last broadcast - and he is one of them.. Dr Tom O'Bryan -Gluten Summit - should find him on the net and all the details. The Prof specialises in auto-immune illnesses in Israel - I know - too far to go on your day off - but he may just have some pearls of wisdom that will resonate with you. As I have mentioned before it would be great if there were clinics in the UK for auto-immune issues. I was diagnosed with Crohns over 40 years ago - and not once was I given advice re AID - so had to read and learn for myself. Maybe things are better now and yes we do have access to information.....

[yorkshiregirl44 in reply to Marz]

Thanks i will have a look at that............Like you i also have crohns, have had it for 30 years, now Hashi and being tested for celiac, All thus is so time consuming and i mean years,.. we need fuller and inclusive testing to address all our immune system.

[Marz in reply to yorkshiregirl44]

When I listened to The Gluten Summit on-line before Christmas they did talk about Coeliac testing - of course it was American and the lists of tests to confirm coeliac was quite long. To me it does not seem adequate in the UK. There are of course degrees of sensitivity - and you do not have to be a full-blown coeliac to suffer. Are you Gluten Free ? Healing the gut is so important for Hashi's et al....as it seems gluten is implicated in many diseases. The gluten molecules can even penetrate the blood/brain barrier. Expect you have gone to the site of Izabella Wentz - the pharmacist with Hashimotos. Her book is a good read and may prove helpful - and you can sign up for her Newsletter....apologies if I am repeating myself or if you have this knowledge already.

[Jackie]

Hi I have 12+ but always told by my top specialists, the only thing to do is to wait until they turn up, but be aware of them The obvious ones that go with thyroid, often, are worth testing for eg. Diabetes.

best wishes,

Jackie.

[yorkshiregirl44 in reply to Jackie]

Thanks......Do you find that alot of your symptoms overlap and was it difficut to get a diagnosis for each of your conditions.

[Jackie in reply to yorkshiregirl44]

Hi Well in one way,I am lucky I have 12 co-morbidities apart from all the other things wrong with me.For these I hand picked my consultants, some of the best and nicest) in the country,I had some terrible ones originally.My wonderful docs say I am so complicated to self diagnose ( they think it is funny and then tell them and they will do whatever is appropriate.They always believe me and are always supportive.as for my NHS Cardio at a top hospital, he is the opposite.I do see a brilliant private one, who tries to help, limited by my always having emergency admittances

best wishes

,Jackie

[peanutbutter]

I've heard of an ANA test that is supposed to be a marker for autoimune tests - I have autoimune issues too and hee haw help with it! I dont know if referral to a rheumologist could help?

[yorkshiregirl44 in reply to peanutbutter]

Thanks..Currently waitind for acth and celiac test results and then back to the drawing board. I feel that we just get passed about department to department with no collaboration between consultants..its a waste of time and money..i think we need a focal point to deal with auto-immune conditions.

[KLR22]

I know the doctor can do an Autoimmune Profile which covers a few autoimmune diseases but not sure if all.

Karen

[yorkshiregirl44 in reply to KLR22]

Thanks Karen thats my next job to go back to the doctor when i get my last blood results.

[peanutbutter]

Its really difficult when you are dealing with 'thyroid' issues and autoimmune - I have oral crohns and have never had any help with it..... probably money again - and then what can they do?

[yorkshiregirl44 in reply to peanutbutter]

Auto-immune disease may affect different areas but they have a common link and i think we need specialist help not referral after referral to inappropriate people. I have crohns also but affecting large instestine at the same time it diseases my gall bladder, I guess oral crohns is quite rare how do they treat it?

[peanutbutter in reply to yorkshiregirl44]

They dont! I have allergies to food and other substances (benzoates which are in everything) - and all I have is anti-histamine and an epi-pen. If I do an avoidance diet I would eat nothing. My friend is a coeliac and gets to eat more than me! So I'm just careful and have to know what causes worst reaction (last time massive welts all over body like allergic eczema - got misdiagnosed with scabies!). Are you given steroids? some people dont realise they have it, ie ulcers in mouth, swollen tongue, ridges. The corners of my mouth cut - I had an MRI to check to crohns of gut but didnt find.....doesnt mean isnt any tho...I've had my suspicions and certainly had symptoms of.

[yorkshiregirl44 in reply to peanutbutter]

That moust be so difficult for you without any proper medical treatment or guidance, No i dont take steroid, i had a bowel resection years ago and have had minor episodes but thankfully nothing major. I do get cuts around my mouth sometimes and mouth sores. Do you have any family history of crohns or ther auto-immune diseases.

Did you then go on to develop thyroid probs?

[peanutbutter in reply to yorkshiregirl44]

I've had the crohns since I was 8. I had so many X-rays it wasnt funny. I had thyroid cancer (radiation and thryoid cancer link..mmmm). I had thyroid imbalance for years as in my 20's I had a blood test and the gp said, oh your thyroid is out - never mind leave it!! I have been tested for coeliac by gp but I dont know if the test is sufficient.

Do you have to watch what you eat? Do you still have 'attacks'? I'm looking at supplements at the moment - was vitamin d deficient - so take d3 now - looking into others. Anything autoimmune seems to bring deficiencies with it.