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any one have these type of autoimmune symptoms?

Hello, a few years ago I had a positive ANA and low but positive dsDNA , A and B antibodies. I also had some IgG antibodies? Sorry if I am not using the correct terminology. Everything has been low but it is wreaking havoc on my body. My normal body temp sits around 96 and I sit at 99/100 9 out of 10 days now. My organs appear un affected in their functions thank God, but physically I am getting worse. My last rhumetologist suspects celiac but said why get the full testing since it is obvious I have antibody reaction, I swell up like I'm 7 months pregnant if I even get trace gluten and the diarrhea is awful. Since being strict gluten free I have had 0 migraines which is awesome because they were getting up to 3 times a month causing temporary facial paralysis and upper body numbness. So all of this back ground brings me to my long question. My hubby is military and I always am moving every 2 years. I have been thrown a lot of "diagnosis" based on my past without any definitive test to confirm or rule anything out other than antibody blood tests. I really hate going to the doctors because they just want to put me on meds without finding the real problem. Since going gluten free my ANA has gone back negative which seems impossible, but it has. I was originally thought to have Lupus, then told I have mixed connective tissue disease/disorder and restless leg (which I don't), sjogrens. My main symptoms that brought me the doctors years ago have either been cured by gluten free and the remaining ones are getting worse. Any one have Any idea of what I should be asking my doctor or insisting that they do since none of them really seem to care. It effects me mentally sometimes to feel crazy and be in never ending pain that others can't see or relate to. I have a very high tolerance to pain, I suffer silently a lot. However I hate even the slightest touch . Massages are painful, I hate cold water as they both cause all over muscle contractions and pain. So the main issues that effect my life that are causing concern are numbness in my lower body very quickly. Sitting for just 5 minutes without moving causes numbness. Any pressure I put on arms or hands will cause numbness within 5 minutes. My shoulders burn like fire when I hold my arms up for more than 30-40 seconds and get to impossible after about 5 minutes. My toes will sometimes curl when I am resting but more so on my right foot. Using my hands is very painful though I show no signs of arthritis. My muscles in my shoulders and neck will sometimes spasm so tight and literllay stay that way for weeks (supposedly shoulder bursitis) to where I loose the ability to move my arm and turn my neck mainly the right side but happens to both just always worse in the right. The only option I was given was to do steroid injections in them to get them to relax. This has cause one of my rib heads to dislodge 3 times now. My hands lock up, for lack of a better description) in obvious distorted positions when holding something for either a long period of time or something heavy like a box. Just carrying groceries requires great effort to let go of the bags. Besides numbness I am always incredibly stiff after sitting in any positiong. If I sit on the floor for just 5 minutes I could not jump up to save my life and it is painful. I limp around for only 30 seconds to a minute as the stiffness and joints seem to loosen. So back to my question I suppose. I am only 31 this started around 26/27 whatever it is, is getting worse. We eat healthy, gluten free, sugar free (we use honey though) mostly processed free, eat at home, no candy, no soda. I do not exercise regularly anymore hard with 3 little kids and hubby is always gone but I stay active when I have the chance. Lifting, moving stuff, taking kids to park, running around playing with them daily. I am 5'4" and a little over weight at 140 lbs but I don't think too bad. I would appreciate any ideas, what should I look for, I'm really tired of doctors who always ask me what I think is wrong. I don't know! Any advice on what types of autoimmune disorders I should be testing for or any one actually know what these symptoms.could mean? Any advice on how to approach another new doctor that I only get to keep for a year as we will be moving again? Thank you for reading my very long question/story. I don't really know where else to go and I feel like the opinions or advice I get from here will be just as good as I have paid good money to get from doctors and I have a feeling the people who respond here actually care about my well being in some sense or they would not respond.
2 Responses
1530171 tn?1448129593
Hi jluthye.

Yes, indeed, quite a story.

So you likely have celiac's or a serious gluten sensitivity-no brainer, lol!
96F is too low and highly indicative of a hypothyroid** condition, now what's interesting is that most hypothyroid sufferers have gluten sensitivity and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!  
You may look Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance/sensitivity (not necessarily digestive).
While you're at their website also check Array #4 Gluten Cross-Reactive and Sensitivity Foods  & Array #5  Comprehensive Autoimmune Reactivity.

** Forgo the standard serum testing for thyroid-as it indicates only serum thyroid hormone levels and NOT thyroid function, so if you decide to get tested, ask for FreeT3 and Free T4 and also Reverse T3
There's also a possibility that you have Adrenal fatigue***, which  will also cause low temperature, secondary hypothyroidism, with multiple symptoms.
Here's where it gets more complex:
Treating the suspected hypothyroidism, after some initial improvement, without addressing the (suspected) adrenal fatigue, will certainly "backfire" and result in the worsening of adrenal fatigue.
This all starts from  prolonged biological and mental/psychological stress*, which requires high levels of stress hormones
-mainly cortisol- to deal with it, until the time the adrenal system is unable to sustain this increased production of cortisol-so levels of cortisol drop low.
At the same time the adrenals down regulate thyroid function, for adrenal recovery.
Cortisol regulates the immune cells in our gut so when cortisol is depleted*** those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
So, infections are definitely more prevalent in such an environment.
This could explain your rise in temperature, recently.

The adrenal's ability to produce other hormones (DHEA, adrenaline progesterone, testosterone, estrogen) becomes impaired, affecting quality of life and long term health.

***Checkout BioHealth Labs  "Adrenal Stress Profile" and "GI Pathogen Screen",  especially if your cortisol levels are low.
(This is just for your reference and not intended as an endorsement, however, I find BioHealth Labs professional, accurate & efficient)

*Family demands & responsibilities, the stress of moving and re-settling in new places, the distress and worry that comes with being a military wife are all possible stressors in your life.

Left untreated, these above suspected conditions and imbalances, when there's prolonged significant  organ and body system involvement, serious
A/I diseases may develop, like Lupus, Sjogren's, MCTD and others.

What I mention here is at the root level of the onset of disease.
Unfortunately, conventional medicine does not approach it very effectively at this level, so do not be surprised when upon mentioning these suspicions
to conventional doctors, you might be inviting some controversy.

Best, seek a reputable Holistic or Naturopathic Doctor, knowledgeable in these areas of health. You may also want to rule out nutritional and mineral
deficiencies ( tissue magnesium deficiency is suspect -not serum levels), as some of the aforementioned imbalances, cause a depletion of certain nutrients.

I hope this helps, however, please note that my comments are not intended as a replacement for medical advice.

And BTW, I do care and that's why I'm here. Well put jluthye!
You may post again or message me anytime if you need any details or more info.

Best wishes.
Niko

1756321 tn?1547095325
Excerpt from fpnotebook - Anti-Double Stranded DNA Antibody...

"Positive (percentage refers to sensitivity)

A. Systemic Lupus Erythematosus (60%)
1. Associated with Lupus Nephritis
2. Associated with Lupus CNS Involvement
3. Correlates with disease activity
B. Sjogren's Syndrome (5%)
C. Rheumatoid Arthritis (<5%)
D. Chronic active hepatitis
E. Biliary Cirrhosis
F. Epstein Barr Virus
G. Cytomegalovirus"
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1756321 tn?1547095325
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