Sticky Blood-Hughes Syndrome Support
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Sojerns another collectible autoimmune disease!

Hi there! Been out of the loop lately as I've been sleeping a lot! A bit of walking here n there! Was feeling good one day and decided to walk 4 blocks! It was a beautiful day, so I decided later that day it'd be nice for another walk! So of course I had to walk another 7-8 blocks! Remember I have only one leg and prosthetic for other, but I never let that stop me! That night I had horrible pains in my legs and groin! I just rested all day yesterday! I got a phone call from my doctor telling me I tested positive for Sojerns! That I had 2 markers for disease! Lucky me! Now along with APS, RA, & now Sojerns! Just not sure what they do for Sojerns??? I know a few people on here have it! I also have been trying to follow a Gluten free diet of late, not completely, but working on it! Tummy feels better! I need at least 10 teeth pulled and dentist said Sojerns does this to ur teeth! I'm just not feeling myself for a while and maybe need to stop being tested because the positive testing is getting me down! One minute I'm fighting doing diets and all I can even walking and next minute I have something else in my way! Does it ever stop and is there a treatment for Sojerns! I was approved by eye doc for Plaquinil, but that was b4 being DX'd with Sojerns! Any information greatly appreciated! Thx in advance!!! Godspeed to all!!!

7 Replies

RE. Gluten and "I also have been trying to follow a Gluten free diet of late, not completely, but working on it"

Not suggesting that gluten is the only problem. However, Professor Hadjivassiliou, a neurologist in Sheffield runs a gluten clinic and works on autoimmune diseases. He's not an APS specialist, but he is aware.

He's been working on gluten sensitivity and gluten ataxia (look gluten ataxia up, all APS patients might recognise the symptoms) for over 15 years.

His findings and view is that for celiac disease, patients respond almost immediately (within days) to avoiding gluten. However, for gluten sensitivity, represented by raised antigliadin antibodies, it takes six months of complete gluten avoidance for the antibodies to return to normal.

Therefore, it might be worth trying to have a zero tolerance attitude towards gluten for six months and see what happens. I know how hard it is to go without bread.

The other thing to consider is casein (found in all dairy products), especially if you have RA and collection of autoimmune diseases. I work as a geneticist and one of the things we see often (and which is proven in the literature) is that casein interacts with a variation in the HLA-DR family of genes to trigger an autoimmune response (Gluten interacts with HLA-DQ). This is not a rare variation.

Interestingly, in several published review studies on APS and genes the HLA-DR3, HLA-DR7, and HLA-DRw53 variations are over-represented in patients with APS, and these are precisely the variations that interact badly with casein. It doesn't mean casein is the trigger or cause for APS, just that for a significant number of people it could be a trigger.

We are currently working on the HLA genes, and our working hypothesis is that people with just primary APS are likely to have a problem with casein and an interaction with HLA-DR's. Whereas people with APS and Lupus (or another autoimmune disease, including obviously celiac) are more likely to have a problem with both casein and gluten.


Thank you so much that was very informative! What is casein? I think something to do with milk! Thx for ur response! It's greatly appreciated!


Casein is one of two proteins found in milk products (the other is whey). People are often tested only for lactose, which isn't a protein but a sugar. What happens is that the lactose test comes back negative (especially for Europeans), and people assume milk products are fine, and for many they are indeed an excellent food. This isn't an anti-dairy post.

However, for a minority of people casein will trigger an immune response. This is easily measured with an IgE antibody test.

The danger of cutting out too many foods in one go is that it becomes obsessive, overwhelming, and you're not sure what works. Eventually people give up.

The way I did it was that I suspected I had a casein allergy because I something was causing flare-ups, inflammation, rashes, and breathing problems. Casein can also affect your mind: I found I behaved 'strangely' when I was having it.

So I got tested. It was positive. I had confirmation. I cut out milk products.

After my diet had adjusted to that, I wondered about gluten, so I had a gluten screen done. I was negative for celiac, but slightly positive for gluten sensitivity (or more likely wheat, because gliadin is in wheat but not other gluten containing grains). Therefore, over the coming weeks I intend to stop wheat (but not other glutens) and see what happens.


Hi Debb,

I think you are a fantastic person. Handle so many difficult things and also found a Doctor who knows APS and Sjögrens. They are "cousins" and may be treated a bit the same way.

I still wonder if you could phone Dr Erkan and tell him about Sjögrens being positive and that the eye-doc said you could tolerate Plaquenil. I still wonder if you wrote in a post that he suggested you should try Plaquenil and perhaps that is good also for Sjögrens. I do not know.

How is Warfarin working? Now when you change your diet the INR may also change. Who is responsible for you? Is it Dr Erkan? What does he say about your teeth?

Take a rest also you can not do everything at once. One thing at a time.



I'm waiting to see all my docs then see dr. ERKAN! He wants me to get all the data first! My eye doc wanted to send him results! Which he did! I may put a call into him! I'm just not well! I can't sleep and this new groin pain is making it difficult for me to walk! Plus on my half leg, my stump, my knee is in lots of pain making it hard to walk! I'll be seeing Hemotologist on Wednesday, actually tomorrow! I'll fill him in! Thx Kerstin it's always good to hear from you! Godspeed


Sjögrens and other conditions that lead to the horrible dry mouth do indeed have the potential to cause problems with oral hygene. Saliva is a necessary element for the mouth. I see my dentist every three months for that reason. Many drugs can cause a dry mouth and sometimes it is difficult to sort out whether they are the problem, or if it is Sjögrens. In my case the consultant decided against what she referred to as the definitive test, a lip biopsy, saying to carry it out just to give me another label, when the treatment would not change, was pretty pointless. I am prescribed hydrochloroquine and pilocarpine. The latter gets the saliva flowing a treat but doesn't last too long at night.


Thank you so much for all responses! It's very helpful to me!


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