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Undiagnosed Autoimmune Disease - No one will listen to me

Posted by katies0lvi3 @katies0lvi3, Jun 11, 2022

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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wendy517 | @wendy517 | Oct 6, 2025

Thanks for all the encouragement! Ive bought probably 10 different kinds of GF bread, they're all cardboard to me so I don't bother eating it, except for a cinnamon raisin bread I found that I love. I'm going to bake my own one of these days. Doesn't sourdough have gluten in it? Just less because of the fermentation process, is what I was lead to believe? Thank you again!!

REPLY
1 reply
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annpeters | @annpeters | Oct 6, 2025
In reply to @wendy517 "@gigi4 I'm a huge fan lf functional medicine and finding the root cause. I spent my..." + (show)
Profile picture for wendy517 @wendy517

@gigi4 I'm a huge fan lf functional medicine and finding the root cause. I spent my life miserable (off and on, not constantly but enough that I missed out on lots) with gastro issues that a good 10ish Gastro docs would NEVER diagnose properly. It was my health coach (not a physician) who determined I had SIBO (Small Intestinal Bacterial Overgrowth) and it can be fixed! Yes, fixed, not take a pill and mask symptoms. That's bad and wrong in so many ways.

Trust me, it's not easy going through the fixing process and its back again (can come back if you get food poisoning, have to take antibiotics for something etc.) So once again Ive had to eliminate all FODMAPS, have to wipe my gut out of all microbiom and then eat fermented foods to help repopulate my large intestine with the good bacteria.

Leaky gut is also VERY real and you can work towards fixing the leaks. Eat clean, no processed food etc.

My current Gastro doc who I love because he understands SIBO and knows its a real thing and is the cause of most IBS issues. He told me, most are not willing to do the work, they want an easy way out and take a pill.

Personally, I want to get at the root cause and fix it or keep it at bay by following certain food rules.

Do I miss great pizza, delicious fresh baked bread etc etc. Yes, all the time, BUT and its a big butt 😉, I want to ski until I drop dead which means I need to keep my body in as best shape as I can.

Happy to speak to anyone directly about my SIBO journey. It was a long one.

Hang in there, we're in this journey together 🙏 ❤️

Jump to this post

@wendy517 hi Wendy. I definitely would love to talk to you further about your SIBO journey. How do we go about doing that other than just typing here? I don’t have long distance in the US at this point. I could possibly get it though or there’s email? Let me know your thoughts. Thank you so much.

REPLY
1 reply
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sylvias | @sylvias | Oct 7, 2025
In reply to @wendy517 "@gigi4 I'm a huge fan lf functional medicine and finding the root cause. I spent my..." + (show)
Profile picture for wendy517 @wendy517

@gigi4 I'm a huge fan lf functional medicine and finding the root cause. I spent my life miserable (off and on, not constantly but enough that I missed out on lots) with gastro issues that a good 10ish Gastro docs would NEVER diagnose properly. It was my health coach (not a physician) who determined I had SIBO (Small Intestinal Bacterial Overgrowth) and it can be fixed! Yes, fixed, not take a pill and mask symptoms. That's bad and wrong in so many ways.

Trust me, it's not easy going through the fixing process and its back again (can come back if you get food poisoning, have to take antibiotics for something etc.) So once again Ive had to eliminate all FODMAPS, have to wipe my gut out of all microbiom and then eat fermented foods to help repopulate my large intestine with the good bacteria.

Leaky gut is also VERY real and you can work towards fixing the leaks. Eat clean, no processed food etc.

My current Gastro doc who I love because he understands SIBO and knows its a real thing and is the cause of most IBS issues. He told me, most are not willing to do the work, they want an easy way out and take a pill.

Personally, I want to get at the root cause and fix it or keep it at bay by following certain food rules.

Do I miss great pizza, delicious fresh baked bread etc etc. Yes, all the time, BUT and its a big butt 😉, I want to ski until I drop dead which means I need to keep my body in as best shape as I can.

Happy to speak to anyone directly about my SIBO journey. It was a long one.

Hang in there, we're in this journey together 🙏 ❤️

Jump to this post

I had chronic constipation from hypothyroidism. Reading and implementing the dietary recommendations in Dr. Williams Supergut book turned my gut around within a week. The most important thing is rebuilding the gut biome with his super gut yogurt made a home. You can heal SIBO using his method. Avoiding gluten plus his yogurt will turn you around.
Also, to further help reduce inflammation in the body read about avoiding seed oils in a book called Dark Calories by Dr Catherine Shanahan.

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bostonian71 | @bostonian71 | Dec 3, 2025

Im very worried. My daughter is allergic to all food . She has been on pills for histamine and strong allergy pills . Last year she could at least eat certain things but now all she has been surviving with kate farm milk and a specific gluten free soup. They did a biopsy on her stomach and it did show a large amount of MAST CELLS. Every time she gets blood test done they come out fine. IS ANYBODY ELSE GOING THROU THIS. GOD IS GOOD SHE IS STILL HOLDING ON. Please help

REPLY
4 replies
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covidstinks2023 | @covidstinks2023 | Dec 4, 2025
In reply to @bostonian71 "Im very worried. My daughter is allergic to all food . She has been on pills..." + (show)
Profile picture for bostonian71 @bostonian71

Im very worried. My daughter is allergic to all food . She has been on pills for histamine and strong allergy pills . Last year she could at least eat certain things but now all she has been surviving with kate farm milk and a specific gluten free soup. They did a biopsy on her stomach and it did show a large amount of MAST CELLS. Every time she gets blood test done they come out fine. IS ANYBODY ELSE GOING THROU THIS. GOD IS GOOD SHE IS STILL HOLDING ON. Please help

Jump to this post

@bostonian71 Has she been to an alternative medicine/functional medicine doctor? They think outside the box. You could take all of her bloodwork & tests when you go and at least have a consultation.

On my knees right now praying for her & you. Blessings & Prayers....

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 4, 2025
In reply to @annpeters "@wendy517 hi Wendy. I definitely would love to talk to you further about your SIBO journey...." + (show)
Profile picture for annpeters @annpeters

@wendy517 hi Wendy. I definitely would love to talk to you further about your SIBO journey. How do we go about doing that other than just typing here? I don’t have long distance in the US at this point. I could possibly get it though or there’s email? Let me know your thoughts. Thank you so much.

Jump to this post

@annpeters There is also private messaging. If you would like to private message someone, you can find the instructions by clicking on the box on the right-hand side of the page that says “New to Mayo Clinic Connect? Tips on how to use Connect safely”. All communication will be private between you and the other person. Try it!

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pm56 | @pm56 | Dec 8, 2025
In reply to @wendy517 "Thanks for all the encouragement! Ive bought probably 10 different kinds of GF bread, they're all..." + (show)
Profile picture for wendy517 @wendy517

Thanks for all the encouragement! Ive bought probably 10 different kinds of GF bread, they're all cardboard to me so I don't bother eating it, except for a cinnamon raisin bread I found that I love. I'm going to bake my own one of these days. Doesn't sourdough have gluten in it? Just less because of the fermentation process, is what I was lead to believe? Thank you again!!

Jump to this post

@wendy517 yes that’s what my rheumatologist said - if I’m dying for a sandwich and don’t want GF, have a quality sourdough that’s made from just flour, water, salt and starter as the gluten is lower and tends to be more easily digested due to the fermentation (but not if you’re a celiac though as that small amount of gluten can still be enough to do some damage). Good luck - Pauline 😊

REPLY
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Alta Net | @altabiznet | Dec 8, 2025
In reply to @bostonian71 "Im very worried. My daughter is allergic to all food . She has been on pills..." + (show)
Profile picture for bostonian71 @bostonian71

Im very worried. My daughter is allergic to all food . She has been on pills for histamine and strong allergy pills . Last year she could at least eat certain things but now all she has been surviving with kate farm milk and a specific gluten free soup. They did a biopsy on her stomach and it did show a large amount of MAST CELLS. Every time she gets blood test done they come out fine. IS ANYBODY ELSE GOING THROU THIS. GOD IS GOOD SHE IS STILL HOLDING ON. Please help

Jump to this post

@bostonian71

I was diagnosed 3 years ago with scleroderma, then systemic sclerosis SS. My symptoms started with allergy to multiple foods, starting from raw fruits and vegetables, and then fish, meat, even pasta and bread. Systemic Sclerosis has multi-system involvement, and sometimes it starts in GI and skin only. It can be slow progressing. Blood test for SCL-70 and other autoimmune antibodies can help with diagnosis, ordered by Rheumatology. I also saw Gastroenterologist, and Humira was helpful with my GI symptoms, irritable bowel can be a part of scleroderma as well.

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