Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
Same old story? 🙂
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Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
🙂 Sorry if this next one is a bit of a novel, but I’m honestly pretty freaked out 😢
It's going like this:
I dealt with dental issues for a few years, and every three months or so, everything would just swell up. Every dentist I saw insisted they could fix things without extractions, and I kept hoping they were right—until the pain became absolutely unbearable. At that point, I started leaning hard on Advil and antibiotics.
Last April, this rash showed up on my hip. It looked like a bruise at first, but it just kept spreading. As the rash grew, the hip pain got worse, and eventually, I ended up screaming for help in the ER because I was literally peeing blood. (They found some kind of shadow on my left hip that was pressing against my uterus and kidneys; the doctors weren't even sure what it was, but once that shadow cleared, the hematuria stopped). While I was hospitalized, besides the hip pain spiking, I had swelling in my pelvic ligaments and my sternoclavicular joint on the left side, and the rash started spreading from my left side over to the right. They discharged me from the hospital with a suspected diagnosis of sacroiliitis and rheumatoid arthritis (L:7.44, e 4.70, HGB 128, HCT 0.382, MCV 81.3, MCH 27.2, MCHC 335, T 353, glucose 5.3, urea 3.9, creatinine 83, K 4.3, NA 135, Cl 99, CRP 17.7, AST 16, ALT 20, LDH 160, CK 61, urine protein 80.8, IgG 21.38, IgA 4.22, IgM 2.11, C3 1.36, C4 0.379, fibrinogen 5.7, anti-dsDNA neg, p-ANCa neg, c-ANCa neg, ENA profile neg, serum protein electrophoresis: 38.9 alpha1 2.3, alpha2 8.3, beta 10.9, gamma 20.4. Urinalysis: yellow, slightly cloudy, protein: low, specific gravity: 1.014-1.015, leukocytes 4-5, bacteria trace+, squamous epithelial cells 3-4). The diagnosis was🙏seronegative spondyloarthropathy and bilateral sacroiliitis.
Since then, and up until about two weeks ago, I went ahead and pulled every single tooth that ever gave me trouble (not to mention, there isn't much left 🙂). But the rash kept expanding, and the leg pain got so bad sometimes I couldn't even sit down by myself. I tried taking Solpadeine for 5-6 months, but besides making me vomit and causing blood clots, it didn't do a damn thing.
I was recently admitted back to the hospital, but this time it was for dermatology because of the rash. They suspected dermatitis herpetiformis, but they couldn't be certain since it wasn't in the "classic" spots, and they couldn't even do a biopsy because the rashes had already been treated. They sent me home on a gluten-free diet (suspecting celiac disease; I'm not technically allergic to wheat, but maybe it's celiac because I used to vomit every time I ate anything with gluten). Regarding my hips, they said it’s the sacroiliitis again and linked it to the skin issue. They mentioned I might need immunosuppressants/cytostatics, but they couldn't decide which ones would actually kill the pain. My recent labs are: Brucella test negative, Se33, albumin 0.5, globulins 0.5, iron 5.4, AST 11, urine protein 82, ANA positive, anti-dsDNA negative, anti-SS-A 4.22, anti-SS-B 0.17, anti-Sm 0.75, anti-Sm RNP 0.1, anti-Jo-1 2.83, anti-Scl-70 0.5, p-ANCA 0.51, c-ANCA 1.03, fibrinogen 5, CRP 16 (about 20 days before admission, my CRP was 70 and SED was 90), B12 active 81.09, ferritin 38.09.
Immunology tests: C3-1.380, C4-0.377, CIC 33.68, HLA-B27 negative.
Stool samples and bacterial cultures came back negative.
I saw a Gastroenterologist who ordered an endoscopy, and the results were normal. It says: Normal endoscopic findings throughout the esophagus, normal findings in the stomach area, and normal findings in the examined portion of the duodenum. A colonoscopy was done last year and showed: External findings normal; perform cecum check; plenty of haustral folds, some content in the lumen, mucosa visualized as intact.
Again, sorry for the massive post, but I am genuinely terrified. The doctors just keep bouncing me from one specialist to the next while I'm still stuck here in constant pain. :/
It's going like this:
I dealt with dental issues for a few years, and every three months or so, everything would just swell up. Every dentist I saw insisted they could fix things without extractions, and I kept hoping they were right—until the pain became absolutely unbearable. At that point, I started leaning hard on Advil and antibiotics.
Last April, this rash showed up on my hip. It looked like a bruise at first, but it just kept spreading. As the rash grew, the hip pain got worse, and eventually, I ended up screaming for help in the ER because I was literally peeing blood. (They found some kind of shadow on my left hip that was pressing against my uterus and kidneys; the doctors weren't even sure what it was, but once that shadow cleared, the hematuria stopped). While I was hospitalized, besides the hip pain spiking, I had swelling in my pelvic ligaments and my sternoclavicular joint on the left side, and the rash started spreading from my left side over to the right. They discharged me from the hospital with a suspected diagnosis of sacroiliitis and rheumatoid arthritis (L:7.44, e 4.70, HGB 128, HCT 0.382, MCV 81.3, MCH 27.2, MCHC 335, T 353, glucose 5.3, urea 3.9, creatinine 83, K 4.3, NA 135, Cl 99, CRP 17.7, AST 16, ALT 20, LDH 160, CK 61, urine protein 80.8, IgG 21.38, IgA 4.22, IgM 2.11, C3 1.36, C4 0.379, fibrinogen 5.7, anti-dsDNA neg, p-ANCa neg, c-ANCa neg, ENA profile neg, serum protein electrophoresis: 38.9 alpha1 2.3, alpha2 8.3, beta 10.9, gamma 20.4. Urinalysis: yellow, slightly cloudy, protein: low, specific gravity: 1.014-1.015, leukocytes 4-5, bacteria trace+, squamous epithelial cells 3-4). The diagnosis was🙏seronegative spondyloarthropathy and bilateral sacroiliitis.
Since then, and up until about two weeks ago, I went ahead and pulled every single tooth that ever gave me trouble (not to mention, there isn't much left 🙂). But the rash kept expanding, and the leg pain got so bad sometimes I couldn't even sit down by myself. I tried taking Solpadeine for 5-6 months, but besides making me vomit and causing blood clots, it didn't do a damn thing.
I was recently admitted back to the hospital, but this time it was for dermatology because of the rash. They suspected dermatitis herpetiformis, but they couldn't be certain since it wasn't in the "classic" spots, and they couldn't even do a biopsy because the rashes had already been treated. They sent me home on a gluten-free diet (suspecting celiac disease; I'm not technically allergic to wheat, but maybe it's celiac because I used to vomit every time I ate anything with gluten). Regarding my hips, they said it’s the sacroiliitis again and linked it to the skin issue. They mentioned I might need immunosuppressants/cytostatics, but they couldn't decide which ones would actually kill the pain. My recent labs are: Brucella test negative, Se33, albumin 0.5, globulins 0.5, iron 5.4, AST 11, urine protein 82, ANA positive, anti-dsDNA negative, anti-SS-A 4.22, anti-SS-B 0.17, anti-Sm 0.75, anti-Sm RNP 0.1, anti-Jo-1 2.83, anti-Scl-70 0.5, p-ANCA 0.51, c-ANCA 1.03, fibrinogen 5, CRP 16 (about 20 days before admission, my CRP was 70 and SED was 90), B12 active 81.09, ferritin 38.09.
Immunology tests: C3-1.380, C4-0.377, CIC 33.68, HLA-B27 negative.
Stool samples and bacterial cultures came back negative.
I saw a Gastroenterologist who ordered an endoscopy, and the results were normal. It says: Normal endoscopic findings throughout the esophagus, normal findings in the stomach area, and normal findings in the examined portion of the duodenum. A colonoscopy was done last year and showed: External findings normal; perform cecum check; plenty of haustral folds, some content in the lumen, mucosa visualized as intact.
Again, sorry for the massive post, but I am genuinely terrified. The doctors just keep bouncing me from one specialist to the next while I'm still stuck here in constant pain. :/
Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
So you're actually suggesting I bring up leaky gut syndrome to my doctor? Look, the whole rash and pain situation kicked off right when I was dealing with a massive toothache and slamming antibiotics and painkillers like candy. I was easily popping four Advil at once, and thanks to my dentist's advice, I ended up having all those teeth pulled anyway 🙂.
Is your DH something you were born with or did you pick it up along the way? And more importantly, did you actually manage to fix it? 🙂
Is your DH something you were born with or did you pick it up along the way? And more importantly, did you actually manage to fix it? 🙂
Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
Back again 😁 Gut health is fine—totally great 🙂 I had to go through a colonoscopy (God forbid anyone else has to deal with that) 🙂 Sure, DH can cause bone pain, but I’m not convinced it causes hip inflammation. I haven't heard of anyone actually dealing with inflamed hips, and besides, you can see that kind of inflammation on a CT scan—my hips are basically black holes right now 🙄 My immunology tests look okay; only the p-ANCA came back positive, but that's manageable, and my RF and ASTO levels are low... :S 🙂 They've ruled out all the usual suspects: Crohn's, ulcerative colitis, Reiter's, Ankylosing Spondylitis, rheumatoid arthritis, even a herniated disc. Thank God I'm negative for all of them. I just wish they'd figure out what's actually happening so I can get the right treatment. This constant guessing game and being sent from one specialist to another for endless tests is absolutely killing me. Do you have DH too? 🤷
Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
Look, here’s the deal: I already had my colonoscopy and everything came back perfectly clean. I’ve got a gastroscopy scheduled for Monday too—I’m pretty sure that’ll be fine as well, since my stomach doesn't even bother me, but hey, let them check. I’ve been strictly gluten-free for two weeks now, though I don't know much about gut dysbiosis. What are you getting at? My stool samples have come back normal two or three times already, too. I'm waiting on a medical board to look into this sacroiliitis issue because, honestly, it's been a nightmare. I've seen five orthopedic surgeons and two rheumatologists, and only one orthopedist—who’s been in the game for 40 years—even admitted he'd heard of it once. It's terrifying. I'm scared because nobody seems to know what's going on, and this has been dragging on since May. Now I'm stuck without any medication. This is the second hospital they've transferred me to, and even when I went to private specialists, I got nowhere. It feels like everyone is just washing their hands of me and passing the buck to the next doctor. Good grief, they haven't even opened my skull yet. 😁 Can you tell me anything else? I am seriously lost here... :/
Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane
in Health ·
🙂
Anyone here ever dealt with sacroiliitis? I’m talking full-on hip inflammation—sacroiliac joint issues. My HLA-B 27 came back negative, but I’m dealing with anemia, high fibrinogen, elevated ESR, and CRP levels are also up. Everything is hitting the 100 mark, with fibrinogen at 5. Does anyone actually know what triggers sacroiliitis, especially when you're also dealing with dermatitis herpetiformis (basically Celiac)? All these symptoms—the hip inflammation, the rash, and the gluten enteropathy—all hit me at the exact same time. If anyone knows anything about this, I'd appreciate it. Thanks 🙂
Anyone here ever dealt with sacroiliitis? I’m talking full-on hip inflammation—sacroiliac joint issues. My HLA-B 27 came back negative, but I’m dealing with anemia, high fibrinogen, elevated ESR, and CRP levels are also up. Everything is hitting the 100 mark, with fibrinogen at 5. Does anyone actually know what triggers sacroiliitis, especially when you're also dealing with dermatitis herpetiformis (basically Celiac)? All these symptoms—the hip inflammation, the rash, and the gluten enteropathy—all hit me at the exact same time. If anyone knows anything about this, I'd appreciate it. Thanks 🙂