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Syndrome Sjögren


JAQUIROUIN
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Recent research has shown that eliminating glutten, dairy and sugar - can help with auto immune problems. I have low IGG levels and have eliminated these things. I didn't realize how much they were affecting me until I mess up and have them. Then I can really see how much they impact my health. It's really hard to do - but would possibly make a difference.

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I have sjogrens syndrome. I've been on a gluten free diet and it helped GI issues as a child but did nothing for me as an adult. Realize a true gluten free diet is very difficul. you need to avoid all products even made in kirchens with other products containing gluten. There are tests for celiac disease that are extremely accurate. Despite doctor after doctor thinking I have gluten intolerance or celiac, no tests ever show it. Right now, I'm just lucky to find something I can eat. Sjogren's patients have a high rate of autonomic problems, something like 50%.

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I have also tried elimination diets for years with varying levels of success. the ones that seemed to help were the low starch diet and the cave man diet. The ones that did nothing were gluten free and sugar. Dairy for me sometimes helps.

I think its juts a way of distracting your immune system by changing the things coming in to challenge it.

People with Sjorgens - does your POTS wax and wane or is it always present?

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I often have a high ANA but we can't pin point what is causing it. :unsure:

My POTS is usually around and I feel pretty bad if I don't take my medicines, so I am on those indefinitely.

I really have no clue what is going on and it frustrates me. Sjögren's, Lupus, a high-ANA that will never result in anything? It's annoying, and I wish it were easier to diagnose these things.

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I dont think that these illness always follow text book delineations. I know a lady that had RA for two years then randomly she got MS and RA disappeared, and then ten years late she now has M.gravis and her MS went away. She is seronegative and does have any of the histocompatibility genes for these conditions.

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I often have a high ANA but we can't pin point what is causing it. :unsure:

My POTS is usually around and I feel pretty bad if I don't take my medicines, so I am on those indefinitely.

I really have no clue what is going on and it frustrates me. Sjögren's, Lupus, a high-ANA that will never result in anything? It's annoying, and I wish it were easier to diagnose these things.

There is no doubt in my mind there is a link with autoimmune issues and dysautonomia, although like you say it is difficult to make sense of it and so different patient to patient, etc. I have two teens with dysautonomia. Autoimmue issues are rampant on the maternal side of my family. My Mom has severe Sjogrens and arthritis and she also has fibromyalgia. Her dad and all of her siblings have various autoimmune conditions. She also has had mild orthostatic issues over the years. My sister and I most likely also have the beginnings of Sjogrens based on symptoms. I have had off-and-on signs of autoimmune issues that they have not been able to identify specifically, and two different autoimmune panels have been significantly abnormal. As abnormal as those have been, I am very fortunate that my signs and symptoms have been very transient. A few times over the years I have also had some mild and fortunately also very transient orthostatic issues.

It's always interesting to hear about others who have links with autoimmune issues as well. There has to be a link with the dysautomia in these cases.

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I'm curious about the dysautonomia / autoimmune connection, too. My brother, who is five years younger than me, was diagnosed with MS in 2006 at the age of 39. However, his MS has been atypical (thank God!) in that he's never had another major "attack" that led to his dx in the first place. His symptoms are SO similar to mine that I was convinced I had MS also, but a MRI didn't show any brain lesions in my case. Although his MRI clearly showed brain lesions typical of MS, I think we have something very similar going on.

I often wonder if it's Lyme disease (we grew up on the East Coast with ticks everywhere; my brother was a landscaper before he got ill and I rode horses in wooded areas almost daily) and not MS at all - from what I've read, it can cause brain lesions in the same way that MS can.

Sigh - it would be so good to get to the bottom of all this.

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