Dealing with a laundry list of symptoms: sacroiliitis, dermatitis herpetiformis, celiac disease, ane

🙂

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 🙂

Susan Newman3 said:🙂

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 🙂

Dermatitis herpetiformis actually stems from the gut—it's basically "skin Celiac." From what I've seen, cutting out gluten is the immediate move; you have to ditch it right away. Honestly, it feels like everything you're dealing with points back to an intestinal issue. Celiac symptoms can get incredibly weird—at least they did for me—like joint pain, fatigue, and brain fog. In your case, it seems like there's such a major flare-up in your gut that the inflammation is just bleeding over into the nearby area—your hips. Some naturopaths argue that it's all down to gut dysbiosis—basically an imbalance in your microbiome—where pathogens release toxins into your bloodstream that trigger all these reactions. A gluten-free diet will definitely help, but you'll likely need to keep working on fixing that gut flora too...

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... :/

There are two big red flags pointing to gut issues and anemia here—DH’s gluten intolerance and likely some malabsorption causing the anemia. If that hip pain kicked in at the exact same time, it's a safe bet they're all connected, right? It's probably just inflammation from the gut spreading to nearby tissue. Dealing with this isn't easy because most orthopedic surgeons couldn't care less about how your internal organs might be affecting your joints—that's just how specialists operate these days. They'll slice you open, and if they can't put the puzzle pieces together, they just shrug their shoulders and leave you to figure it out on your own...
Basically, you can find the lowdown on dysbiosis at this link (it's the top result on Google, cough, cough 😁)
http://www.mayoclinic.org/diseases-conditions/dysbiosis/symptoms-causes/mc/dysbiosis

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? 🤷

I’m all for using basic logic here—three symptoms hitting at once? The simplest explanation is they share a single root cause. It’s called Occam’s razor in science—don't go adding extra assumptions when you don't need to just to find an answer.
By the way, I also got sent home by the Mayo Clinic because my gut was supposedly "healthy"—they found absolutely nothing. All those tests you mentioned? They completely missed testing for dysbiosis—basically the "leaky gut" syndrome caused by it.
Dysbiosis can be something you're born with, or more likely, triggered by overusing antibiotics and, obviously, stress—just to name the big ones.
Most of the time, we already have a compromised gut flora, but the body manages to compensate for the toxins so no symptoms show up. Then, something else—like a round of antibiotics or a stressful period—knocks things out of balance and the symptoms finally escalate.
Has the onset of these symptoms lined up with anything major happening in your life?

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? 🙂

I feel like there’s actually some logic to what I’m saying and what you went through—right?

In my case, my dermatitis cleared up about a month or two after I switched to a gluten-free diet. But just because my skin looked fine didn't mean I was actually "cured"—I didn't realize that until I started dealing with different skin issues a while back. They weren't classic dermatitis symptoms, though. Looking back, I realized the original dermatitis and these new issues actually hit me at the exact same time initially. Now, after a bit of a rough patch—work stress and all that—only these other symptoms have flared up, since obviously, I'm staying gluten-free now.
Basically, by paying close attention to what I was eating during my peak dermatitis phase, I figured out that bread and sweets were huge triggers for me. Not that any of my doctors ever mentioned that sugar or starch—carbs in general, really—could be part of the problem; they were strictly focused on Celiac disease. And honestly, the diet they push at the local Mayo Clinic is a total disaster—it's almost entirely based on gluten-free flour substitutes, which are basically carb bombs. That can't be good for anyone in the long run... at least not for me.

My advice? Go get every single test you can through your regular doctor first, then track down a good naturopath who can set you up with an "alternative" therapy and a meal plan to fix your gut dysbiosis—which was probably triggered by taking way too many antibiotics without balancing things out with probiotics at the same time.

Something else just occurred to me
There’s actually another angle to this
In naturopathic theory, chronic issues often stem from inflammatory hotspots or pockets of infection—think things like gut dysbiosis or even abscessed teeth—but there's also the factor of heavy metal toxicity
Now, where does that metal come from? Usually, it’s those old silver amalgam fillings
I'm not sure what your specific situation was, but pulling a tooth can be a massive shock to the system—whether it's because pathogens are spreading from an infection site or because you're getting a sudden hit of mercury released from those fillings
There are specific protocols dentists are supposed to follow when removing amalgams, though it's much more common in the States than it is over here
You can get naturopathic testing done to check for both dysbiosis and heavy metal levels
It might honestly be worth running some tests just to rule these possibilities out once and for all
If you want, I can DM you the info for a doctor/naturopath who handles these kinds of tests

Susan Newman3 said:🙂

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 🙂

This is all just a giant mess.
You need to lay it out clearly in this order:
Diagnoses
Symptoms
Lab results
Current treatment
And let me tell you right now: don't bother with naturopathy or any of that nonsense. It won't help you, and frankly, it goes against everything we stand for here at PDF 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. :/

Same old story? 🙂