Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Update on Unintentional Weight Loss - Great News!

In December 2018 I posted here asking others if they had experienced unintentional weight loss due to AS. I suspect that I have AS and my symptoms have been mild over the last 4 yrs since they began. Basically I started to gradually lose weight...nothing major but I was already lean at 6'3" 166lbs. I made no diet changes and over 11 months lost 14lbs. Not a lot weight but I was eating more and lifting weights so this was odd. Saw my doctor and we tested for EVERYTHING and all tests were normal. Also saw a naturopath...test results showed gut dybiosis, leaky gut (very elevated zonulin), and SIBO. SIBO was a surprise since I had zero gut issues.
Tried treating SIBO thinking that was causing my weight loss but failed per subsequent breath tests. Hydrogen numbers kept getting higher after treatments.
I did both herbal/low fodmap and then 2 rounds of antibiotic treatments (both failed)
So on January 1st, 2019 I began the SCD diet but including some of the forbidden foods(pure coconut milk, sauerkraut ) since I didn't have any GI issues. SCD diet was the early treatment for SIBO (before antibiotics and low fodmap) plus I wasn't convinced that I had SIBO. I read my weight loss could be a malabsorption issue or maybe leaky gut. My main symptom other than the mild AS symptoms was daily brain fog which generally came on after eating.
Since I was cutting out high starch foods I focused on eating lots of good fats to help mitigate any further weight loss. I also kept my calories around 3,000/day which I had already been doing.
I maintained the SCD diet strictly for 5 months and was slowly gaining muscle. After 5 months I did have a few cheats here and there only if I was traveling. I continued the diet for a total of 9 months. I was lifting weights to support a healthy weight gain (although I had always been lifting regularly before with no gain) I am happy to report that I am 20lbs(all muscle) heavier now.
I am not strictly eating SCD now and have added more starches. It doesn't seem to make a difference in my weight. The cool thing is that I eat the same amount of calories as when I was weighing 152 but now weigh 172 which is actually 6lbs heavier than when the weight loss began. I suspect that I weigh more now than post weight loss is because my gut is finally absorbing my food.
*I also took colostrum, drank bone broth regularly (home made), and took Restore to really focus on healing leaky gut.
Now my brain fog is almost completely gone. Although I do suspect I may have a fructose issue. It seems I get foggy/fatigued after eating some fruits and sweet potatoes. I continue to take Restore and have noticed a difference in mental clarity while taking it. It also keeps you super regular with healthy bowels.
I would say that my AS symptoms have lessened but they are still there but again very mild.
I did not take any probiotics but did eat the SCD 24hr homemade yogurt and ate lots of high quality sauerkraut.
I do plan to a strict SCD protocol for a month or two again this year for "insurance".
Hope this information helps someone. Thanks for reading! HB

Get a Genova comprehensive stool test and find out exactly what pathogen your dealing with

There are so many different types of antibiotics out there to say they didn't work just means you haven't found the right one
It's like saying an antibiotic you would take for tonsillitis doesn't do anything for a UTI
In medicine there are actually very few conditions which are treated by the same antibiotic

I did to Genova comprehensive stool analysis tests. No pathogens, yeast, parasites, etc. Just evidence of dysbiosis and very high zonulin (leaky gut indicator)
Also did SIBO breath tests and hydrogen was very elevated.

True...there are many types of antibiotics. But for SIBO there is one antibiotic that is prescribed and has a good success rate. I have never taken antibiotics and avoid them at all costs. However, Xifaxan, which is used to treat SIBO doesn't stay in your small or large intestines long enough to wipe out your beneficial bacteria. I did you use this antibiotic and after not having success with herbal and diet protocols. It's most likely that I didn't or don't have SIBO even though breath tests indicated otherwise.

One thing to add regarding my weight gain. While I have been able to gain muscle weight, my body fat or subcutaneous fat that is non existent. It's not diet related. I noticed this fat loss initially and had made zero diet changes.