GI issues, abdominal discomfort and flank/back rib pain

Thanks Nicky. I truly appreciate the support.

I am still avoiding biologics for now. Biologics to me are the epitome of a casino table drug (which often times is the case for so many pharmaceuticals.) You're simply gambling short-term benefit for potential long-term catastrophe. I don't blame ANYONE for making that choice, though. I KNOW how difficult the pain and discomfort can be and it can certainly make one willing to take a gamble. I know I am on the brink of caving in. So far though, I'm trying to keep it together with walking, counseling, a new medical team this month (hopefully), supplements and diet. My flare-up has subsided a bit this week, so I am amazingly grateful.

Yes, finding the right team of medical professionals is the hardest part, IMHO. It's so often we feel crazy and on an island with AxSpA. In my experience, I often feel marginalized and dismissed; even by family & friends at times.

New GI doc in the works and 2nd Rheumatologist appointment coming this month. Fingers crossed.

Thanks so much for responding to my message. I truly feel for you. You are in a bind when it comes to the availability and quality of care necessary for your GI health. No wonder your anxiety is sky-high. This is a terrible struggle to be in, one that is difficult and at times defeating.
When I lived in a small mountain town, I, too, traveled hours to see specialists as the only ones were in the next town or the big city. In the end, I found it worth the drive to get expert medical care. I hope you find assistance quickly, can get in sooner than December, and that you get well on your way to findings solutions and healing quickly.


I am glad you went to a naturopath and they tried to help by recommending the carnivore diet. I honestly would never be able to go on that as I can barely tolerate red meat - it is a trigger - and I'd be in severe pain. I am lucky to have it once a month as it throws my whole system off. I am not sure why but I do not tolerate it at all. I've learned this over the years of struggling with GI issues. I actually have a list on my fridge of foods to avoid (mind you, at times I can crave the foods that are causing difficulty) such as red meat, processed foods, and most dairy. Bread and grains bloat me and make me very uncomfortable, etc.


Have you been back to the naturopath to follow up and explain the concerning outcomes after a few weeks on that diet? I am curious to know the next step they recommend. Have you done any sort of testing such as for SIBO or Celiac disease? Are they also treating your airway reflux?


Curious to know if you've tried other diets like the FODMAP diet, AIP diet, or elimination diet to help. Do you find issues with grains or bread? Sorry, so many questions - it can all be so complicated and frustrating as you go about the long journey to diagnosis.


I hope, if you stick with her, the GI ARNP can help sort things out for you. I can't imagine the struggle you have with loss of energy and being fatigued constantly, especially while caring for a young family. Wondering if you've taken in some protein drinks and/or nutritional drinks, such as Ensure or Boost, to aid you in getting the nourishment you need. I've had to drink them following surgery when I wasn't eating very well at all, and they truly helped.


Sending you strength to endure this path you are on and hoping you find the expert assistance necessary for your health. Please keep us updated on your complicated journey. We are here to support you as you attend to your circumstances, queries, and struggles. Thinking of you and wishing you better health now and in the future. Warmly ~ Rebecca

Yes, I am in QUITE the bind with medical and balancing everything right now. I do all right with pain/discomfort management and the stress that comes along with being a stay-at-home parent WITH flaring AxSpA for awhile, but the longer I go without proper medical steering my ship, it's only a matter of time before the anxiety gets ahold of me.

I do believe this new GI ARNP will be within a month, but who knows. I'm playing the referral game with my "top-notch" general provider in the Providence system: my referral went out over 2 weeks ago and I'm still toe-tapping.

Yeah, carnivore was the BIGGEST disappointment. I really was hoping I would be one of these amazing stories you always hear about. Instead, much like you, it revealed to me that red meat is triggering my LPR and maybe even the autoimmune GI issues. Especially in excess like an elimination diet.

So the Naturopath is as shocked as I was over the failures of carnivore. She knows that my epidermal psoriasis is a sign of leaky gut or a wrecked gut biome (and genetic, as I tested positive for HLA-B27 in 2021), but she went ahead and green-lighted carnivore before a leaky gut protocol? I was very eager to try carnivore, so I certainly didn't help matters with my enthusiasm. I digress.....we are backing up now and she is putting me on an "aggressive" leaky gut protocol. Usually, that would require some fasting in there, but with my scenario at home, I just can't possibly pull that off, even if I wanted to (and I really would like to try fasting at some point.) The new protocol is a "spore-based" probiotic/prebiotic supplement regiment. 2 months are free to me as a promotion, so I decided to give it a whirl (even though I'm a little leery of some of the bacteria strains being used....)


Celiac: No. I was negative on that.


SIBO: I am STILL waiting on taking the SIBO test, even though I have had it ready at home for months. My problem is, when I get the GI flare-ups and if they get really bad, I start diving into OTC relief stuff just to give me even a half-notch of discomfort relief. I occasionally use low-dose Amitryptaline if they get really severe. Using any prescription meds means you have to wait 2 additional weeks before the 24 hour fasting. Also: my ND is pretty hardcore in her opinion on SIBO. She says, "Can you crap?" I say, "yeah." She says, "you don't have SIBO then." LMAO.


Airway reflux/LPR: well, the short answer is this: I am dealing with the airway reflux the best I can on my own. I know so much about this condition from dealing with the madness of going a year without knowing what was going on and researching, reading and advocating every day to find out. I could honestly probably have my own blog or YT channel about it. Long story: is just too long. There is NO one steering the ship for me, because I have yet to find anyone in 300 miles of me that has any real clue about LPR. 🙁

Diets: I have tried Acid Watchers Diet and did relatively well with it and kept my LPR symptoms fairly low while I was on it. Problem was, I was gaining weight on it and also, with it's inclusion of grains, I was triggering my flare-ups. I did try the Fast Tract SIBO diet too, with the same kind of thing. Yes, I have tried protein shakes to get by. You are catching me in a big intersection of dieting right now, as I have been rather shaken by the failures of the carnivore diet for me, and my inability to stay disciplined a bit longer and transition to paleo or something. I have been flaily a bit as I try and steer the ship again, therefore, my diet is all over the place right now. 🙁

Thank you for your lovely messages. It feels good to connect with people that understand what you are going through. Thank you so much.

I am reading through your gut-healing strategies and am loving it! Most of these things I am aware of and have tried without much success. I you go up and read the comments I left other responders you'll see that the new ND I started going to put me on a strict 30-day carnivore diet to "jump-start" my system and start introducing things slowly back in and get it back to a paleo or histamine diet level. Unfortunately, although I did get through my 30 days, my GI flare-ups started up week 3 for me and it was a mess.

The other problem I deal with: I was diagnosed with post-viral, onset LPR (airway reflux) in 2021. This makes my GI issues EXTRA interesting to navigate. High-fats, high acidity (this includes great things like peppers, onions, garlic, grass-fed beef) can all exasperate things pretty bad or at the least, can flare-up my LPR.

It's a strange and difficult road right now. I am just happy when I get the small windows of reprieve. I am back on Osteo-BiFlex, high Omega-3s and now Berberine and taking a spore-based prebiotic/probiotic plan for leaky gut healing, so hopefully this sets me up straight.

gosh it's a tricky road to navigate isn't it? You're putting in some real hard yards though so I'm sure you'll find something that works for you in time.


I had a lot of issues with getting my diet right in the early days and it took a lot of trial and error before I saw progress. I also had to let go of my perfectionism and stop stressing over every little thing as this was affecting my digestion in a big way. It was amazing to me how much my thought patterns would be reflected I GI distress once I took notice. Not saying this is you, but it was certainly something I had to deal with.


Good luck with it all, I hope your ND had some new ideas and you're on track to try a different strategy that really helps.


We will be thinking of you, please let us know how you're going!


All the best, Anne-Marie (Patient Leader)