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Undiagnosed Autoimmune Disease - No one will listen to me
Hello All - so would love some advice or thoughts.
I'm 43, wife and mother of 3. In May 2017, healthy but slightly overweight, I went to visit family in Texas and had strep throat (which I had about 4 previous times in the previous 2 years). Took antibiotics full round, returned home. Two days after finishing antibiotics, I woke up and could barely even move (couldn't even pull my covers over me, barely walk, severe joint pain muscle pain, you name it. Went to Doc and they sent me to rheumatologist.
They ran so many test with really no avail. The only thing that came up positive was HLA-B27. At the time ANA was negative.
Over the last six years it has been just so much joint pain, muscle pain, muscle weakness. They tried plaquinel first, nothing. Then started my process of biologics. I moved rheumatologist a couple of years into it and she ran more test, but still not much answers. I was put in the spondyloarthropathy category, but really unspecified. My new rhematologist over the last few years has been thorough but has really put me in the complex sector of things. Here's current breakdown:
> have Chronic Kidney Disease, unspecified found in 2008 with proteinuria only; two kidney biopsies only showed some scarring but nothing else
> Clinically: Knees, Elbows, Ankles feet inflammed, swollen, heat; muscle weakness in arms, some tingling in arm and thigh; right SI joint pain (chiropractor manages well); weight gain from predisone and lack of mobility); ringing ears, tops of hands swell for several days at a time; ankles swollen throughout day; itching skin, some low grade fevers at time; High blood pressure; fatigue, cant focus; memory bad
> CRP and ESR both elevated in the 80's - 100's most of the time, can dip down to 50's, 30's if biologic works
> New last month ANA: Positive, 1:2560, Homogenous
> ANA Antibidies: dsDNA was 1, all other antibodies were <0.2 (ALL within normal range) :/
> Vit D: deficient (lowest 11, highest 32) last 5-6 years, currently on 100,000 dose
> Vit B: also low, currently taking injections every other week
> Homocysteine: elevated
> CBC: all normal except elevated WBC (prednisone) and HBG slight low; RDW slight elevated
> CMP: all normal except for creatinine (High) and GFR (Low) from CKD
> All GI scans normal (with only a little GI involvment)
> On my six biologic with doc submitting under Ankylosing Spondylitis
> All Thyroid testing normal except Reverse T3 Elevated
> No RA positive labs
> Started seeing Functional Medicine Practitioner and did mold testing, negative; she is going to help me get rid of inflammatory foods to hopefully help some
Really just frustrated at lack of answers! I know my Rheumatologist is doing her best…I’m just complex. My insurance just denied my next infusion because of dx of 'undifferentiated spondyloarthropathy' being experimental. Doc is considering change of dx to seronegative RA so we have option of a IL-17 drug instead of TNF Blockers. So trying to consider that option.
Any thoughts would be greatly appreciated.
Thanks!
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Welcome new members @ktherese and @jeanneleone9068.
Therese, can you share more about your experience with autoimmune conditions and iron deficiency? Did a total iron panel help determine your diagnosis? Do you have a confirmed diagnosis?
Jeanne, sorry to hear that an underlying cause or condition has not yet been found for your ongoing symptoms. What conditions have been ruled out?
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2 ReactionsNothing has really been ruled out, Mostly in my opinion, I just can't seem to get anyone to realize how ill I am. I have been diagnosed with hypothyroidism and sicca syndrome, but beyond my Liothyronine prescription, my primary and my rheumatologist don't seem to be looking for anything else and haven't prescribed anything besides cyclobenzaprine for fibromylagia and temazepam for my intractable insomnia. .
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1 ReactionRice and corn do not contain gluten. A food cannot be labeled GF unless it meets the FDA criteria. The ingredients also have to list any possible “allergy” components, not just wheat.
There are many incorrect statements in the comment.
PWGrimes -
There is a very successful weed control product for lawns - the only ingredient is Corn Gluten!
An Amish friend uses corn gluten to control weed seed germination in his organic vegetable fields.
Some how I doubt he would agree with your comment.
Chris47-
Rice and corn do not have gluten, I doubt if a dietitian would agree with your rational. Look up gluten free food. Also cows can be grass feed without passing gluten to you. They eat grass which is not wheat.
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2 Reactions@pwgrimes and @chris47 - Just thought I would add my two cents to your discussion with a couple of references that may be helpful. I think you both have a point.
Re: Rice and corn do not have gluten --- The Nutrition Source - What is Gluten: https://www.hsph.harvard.edu/nutritionsource/gluten/
Re: Corn gluten --- "Corn gluten, the by-product of corn processing, contains proteins that inhibit root growth during seed germination for a number of small-seeded annual and ..." --- Corn Gluten Meal: The do’s and don’ts: https://midwestgrowsgreen.org/corn-gluten-meal-the-dos-and-donts/
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3 ReactionsI have celiac and know very well what has gluten and the possibility of it being added for various reasons. Corn and rice are a GF diet mainstay. They use flour as a thickener In so many things. I have to read every label if it is not designated GF. Because Celiac is becoming more well known most processed foods tell you what allergens are in their product.
I have many of the medical problems from 72 years of not knowing what was wrong. My living depends on knowing everything about gluten that is true and scientific. Spreading untruths is a disservice to Celiacs.
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1 ReactionI am not a weed.
No one said you were a weed. I just wanted to remind both members in an argument to be respectful and follow the Connect guidelines. It’s OK to have different opinions and it helps to provide reliable references to support your case. Sorry if I’ve offended you.
Clearly you have found a way to survive your CD. And so have I for the 10 CD damage related autoimmune symptomologies I must manage on a daily basis. My experience with both corn and rice have been and continue to be quite negative!
And my comments are based on the knowledge I have developed based on the cascade of these 10 symptoms that have developed over the last 40 years while dealing with a medical profession that clearly cannot connect the obvious dots.
As far as science goes, I have a PhD in Climatology and have been working with corporations in the AG industry for the last 20 years to achieve a sustainable organic farming future.
As far as gluten goes, whether or not a GF person is exposed to small amounts of gluten is a relatively small problem compared to the massive damage that the Pre GF exposure has done and the cascade of potential 200 plus CD damage related symptoms now attributed to that Pre GF exposure. And, my involvement on this Mayo Connect chat room is strictly based on trying to provide CDers with a more holistic view of their medical problems and not which commercial GF food to eat!
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