Jan –

We’ve switched to coconut or almond flour because hubby is Keto and I can’t afford calories. Sigh. My body loves to hang on to carbs of any kind. Major difference. And we’ve done a lot with coconut water, etc. LOVE it. My daughter loves the coconut or almond milk but it’s too bland for me. We buy unsweetened so she adds a little organic honey. We had dumped rice (except for daughter who rarely wants it) and potatoes but added it back in after friends who were Paleo before us went back to them because of the resistant starches and their child did so much better back on them. Still, maybe once every two weeks??? Something like that.

Don’t you love that organic is growing so fast? The Costco here is almost entirely organic now, not that we’d buy most of it as it’s processed. Sigh. Now I sound like a Cali left-wing foodie.

M –

OMG, you’re years ahead of me. My daughter wants to make homemade cheese too. She eats yogurt like it’s a soda. I have to remember to inbox you when I get ready to try kefir etc….she loves that stuff.

Just a heads up…be very careful of that Zith/doxy regime. Before my onset, I was given 3 Z-packs in a row for pneumonia and lost most of my mucosa (not that I knew what it was at the time). Then a couple of years ago, my AP docs gave me a script for Mino/Zith. After awhile I started calling the Zith portion ‘colon blow’ as a joke. It wasn’t a joke when a few years later I began to…um…rectally bleed every time I took the Zith. I took myself off. My point is, that’s a harsh abx. It was necessary for me at the time to start it because my mycos were rising per testing. Kill one bugger off, another one will try to take over the ‘hood. However, nobody thought to maybe check how I was doing on it. I don’t blame the docs…I blame myself for not going with my gut for over a year. Either way, now you know what to look out for…and why I got into the dietary changes. I knew I needed to strengthen/rebuild the mucosa and research led me to dietary changes.

Pip

Linda –

I don’t know much about the myco testing; just that most AP docs have their own labs, or send them to labs that can do the required testing. Myco’s are hard to get growing in a petrie dish, being small, CWD, and slow growing. This link kind of explains the testing – http://labtestsonline.org/understanding/analytes/mycoplasma/tab/test/ – but I once went to a Dr. Chat that was listed here and the MD was all ‘you know something is wrong, just start abx now’. He said the tests are noticeably unreliable and, also on the RB, I’ve seen posts basically saying one reason for testing is for insurance coverage assuming they can get one of the buggers to swim into the tube and the lab can find it. When I first started, John McD asked me ‘what are you going to do if the test comes up negative’ and he threw me for a loop. I thought for about 10 seconds and said ‘still do AP’. I knew this was infection based, no matter what my docs, all 10 of them, said.

As for the mucosa – this is what I have figured out and what makes sense to me. Your mileage may vary.

Before I ‘got RA’, I had a few things happen in close proximity to the original onset. One was being placed on 3 Z-packs, one right after another. During that time, I began to pass a clear jelly which I later learned was ‘gut mucosa’.

This kind of describes it – sorry for being so graphic.

http://ibdcrohns.about.com/od/relatedconditions/f/mucusstool.htm

Time went on, that stopped, and within a few months the beginnings of PRA happened.

Can I guarantee that’s was the onset? No. I can say that at the time of onset, I had multiple insults to GI health that I don’t think my body fully recovered from.

For me, symptoms included pain in my salivary glands (onset later started there and then moved to my shoulder). My salivary glands kind of work as an ‘early warning system’ for me and if they go off (major excruciating pain in neck below the jaw) I will/would have a reaction to whatever I just ate. My salivary glands do not like lemons (neither do I but I use them anyway), certain processed foods (stopped most of them) and especially, Menchies Frozen Yogurt. What ever. Solved that problem by getting an ice cream machine and occasionally making homemade ice cream with stevia.

Other symptoms I had over the years, and after learning to listen to my body, include bloating, flatulence, intestinal pain, stomach pain, and the occasional liver pain. I’d say I fixed 99% of that by switching to organic foods, adding in veggies until my body no longer reacted to the missing microbes necessary for digestion, and by working on replenishing the gut.

Also, we get organic honey for where I was raised (it’s supposed to help reset your gut with the microbes you were born with) and use that as a sweetener if we need something for my green tea or whatever. Honey is antimicrobial, antiviral, antifungal and antibacterial. For that, you need to contact a beekeeper organization in your area. Don’t fall for any honey saying it’s organic coming in one of those bear plastic jars. See below for my explanation of how I know it’s not really organic…LOL

Some research says that hemorrhoids are a symptom of an inflamed GI tract. I no longer have that problem. And I also think I’m the only person on the Internet talking about gross stuff like that. 🙂

As our family has moved more Paleo-lite, we are working on figuring out how to reset the gut. There is a lot of information on using resistant starches to re-colonize the colon with the correct bacteria. We have also added in soil based probiotics, apparently not available in the USA.

Again, this is just my story. Most of us had a lot more wrong with us than we ever knew when first diagnosed. We consider ourselves blessed that we were able to add 2 + 2 so easily because of our personal situation. While I got a rare form of RA, my husband, on the same Z-packs that I was, got diagnosed with Type 1 diabetes just before I got diagnosed with RA. He’s got a harder time trying to reset his gut because insulin hormones regulate cell metabolism. Not impossible, just harder.

I hope I answered all your questions. Let me know if there is anything else I can explain more in depth.

Pip