16 Months Paleo, A BIG Update

Well, my blogging fell apart. I had a feeling I wasn’t going to be very good at it. My son got out of school yesterday for summer vacation, and for some reason I thought I should pop on here for an update. Under gobs of spam comments (Ugh, I HATE that), I got several good comments, comments about people wanting to try this, people who are wondering if it might help them. Well, I cried! Seriously! I was thinking I was talking to myself here!

So, here’s the update. I love Paleo. I’ve been at it 16 months and have lost 46 pounds. I went from a size 16 to a size 4. I had one question about a person who didn’t need to lose weight, but wanted to try it, stating he/she had lost weight due to RA. My understanding is that RA speeds up a lot of stuff in your body, making you lose weight. In the olden days, before RA meds, people with RA were very thin (have a pic of my great grandmother illustrating that point). Now-a-days, I think it’s more common to be overweight due to RA because many of the meds (especially steroids) can cause weight gain. I’m not a doctor, so this is NON-MEDICAL advice (yes, ask your doctor), but I think if you slow down your disease activity, your weight is likely to stabilize. I would also talk to your doctor about an exercise program, as I find exercise puts a little weight on me, but I also struggle (needed a physical therapist) to find exercise I could do without setting off my joints. In other words, I think Paleo is probably worth a try, especially if it decreases your disease activity.

I have been finding so many good things to eat! My new sin is coconut milk ice cream (So Delicious brand). Don’t get the cookie dough flavor (not Paleo), but I believe the chocolate, mocha, and mint chip all pass the Paleo test.

I am still following these rules:
NO grain
NO dairy
NO legumes
NO tomatoes (most people can eat them, but apparently I can’t)
NO white potatoes
100% of the time on the above rules.

My cheats:
I have some sugar (chocolate, cinnamon roasted almonds)
I have some alcohol (the clear, non-grain ones, vodka, rum)

My positives:
My weight is down to 139. I have much much much better energy. My blood pressure is way down (was up to 130s over 90s, now down to 90s over 60s, maybe a little too low, although I struggled with low BP pre-RA). My RA is way better managed, but it still takes active management. I can go 8 days without my 2 day/week Enbrel shot without pain, but I still need the Enbrel. I do wonder if I totally cut the sugar and alcohol and boosted the exercise if I could stop, but I’m not there, and I’m not perfect. The diet makes me feel SO MUCH better that I’m not very tempted to cheat anymore. Once in a while I do crave a deep dish Chicago-style pizza, but no pizza yet!

My setbacks:
I’ve been having neck issues, likely due to previous RA problems. My ligaments are not tight, and I have what the physical therapist called “an instability.” My neck loses stability, pinches nerves, and causes wicked pain shooting down my arm (either side) that makes me completely beside myself in pain. This is new, but has had a slow progressive start due to carrying a raft on my head last summer. I just graduated from physical therapy for the second time with this issue.

I’m itching. I am terribly itching. I am breaking out in hives 1-3 times per day. I’ve had mild to moderate itching problems since my thyroid (Grave’s Disease, one of my 5 autoimmune conditions) went crazy in 2007. Despite killing off my thyroid, my itching never went away. About 2 1/2 months ago, I started breaking out in hives, first on my legs, now all over. I’ve seen my regular doctor and a dermatologist. No answers other than my histamine level is high (I can take a stick and “write” on my arm. Within 1 minute, the letters will be giant welts on my arm… a cool trick, very itchy!) My next stop is an allergist.

Do I think the welts and hives could be related to the diet? Possibly. When starting Paleo, if you have autoimmune conditions, they recommend cutting out tomatoes, eggs, peppers, and some other things initially. Then you can re-introduce them and see what happens. Tomatoes give me hives. Is there something else giving me hives in the diet? Possibly, but I just can’t seem to figure it out. My current objectives are to cut out bananas for 3 weeks (1 week into that now), then coconut (will be pissed if I’m allergic to that), the chocolate (tried that for a week before, but want to do it longer). The dermatologist thought I could be allergic to my thyroid medicine, and that’s a very high possibility, but I can’t live without it, so what do I do then??? Gotta see the allergist.

Goals:
Solve the itching issue.
Get my son semi-Paleo (he’s 7, and is slow to try new things).
Continue enjoying this new-found level of health I haven’t seen in a long time.
Get to downtown Denver to the Caveman Cafeteria (Paleo food!)

Awesome website: Paleomg.com
Awesome recipes, especially stuffing and apple fritters!

Get a new website going. If you haven’t been to it, we have had a website since 2006: MomsWithRA.org. It was great and we had a lot of moms for a long time, but I’m not in that “new mom” place anymore and am thinking about starting a Paleo/RA/something or other website. I would love some feedback, and thank you so much for the comments. They really do help! I wasn’t very motivated to talk to myself, but I have readers now!!!!

You can also visit me on Facebook under Moms With RA.

Take care, all!

Lori

8 thoughts on “16 Months Paleo, A BIG Update

    • Yes, I eat lots of nuts, primarily pistachios, pecans, and almonds (both whole form and nut flour on the almond). I also eat Hazelnut flour and macadamia nuts on rare occasions. Beans and peas are considered legumes and are off limits, so I don’t have them. Peanuts are also not a nut. They are a legume, so I don’t eat them either.

  1. Hi. I have many food intolerances and chronic hives. I attribute some of this to a histamine intolerance. I also have elevated rheumatoid factor and joint pain, although I am still waiting to see a rheumatologist, again, and have not been diagnosed with RA at this time. I find that tomatoes and eggplant will automatically give me hives, as does alcohol although alcohol also makes my hypoglycemic so I don’t drink at all anyway. I try to keep my histamine low by avoiding histamine releasing and containing foods. You can find sort of helpful lists online. Mostly avoiding major histamine foods helps me. Also, I have seen vast improvement with my hives and itchiness since beginning probiotics containing lactobacillis acidophilus and bifidobaterium.

    • Hi Hilary,
      I’m thinking the possibility is high that I have issues with histamine intolerance as well. That has been my latest theory. I haven’t had any hives in nearly a week, but I am still itchy. I finally got the guts to take my son swimming today (the thought of getting in a chlorinated pool sounded like torture). I actually feel pretty good.

      I’ve cut back most (not all) fruit, as they seem to be the biggest histamine foods, and I had been eating a lot of them. As a result, I seem to be eating more other things, which seems to be making my RA a little worse. I’ve got to figure that out.

      Tomatoes and eggplant are nightshades (as are potatoes, peppers, and spices like cayenne and paprika, both peppers) and I seem to have issues with those too. I never ate eggplant before, but with tomatoes, I get tiny little hives on my forearms or between my fingers. It’s very different than this other more systemic hive thing I’ve got going on.

      Unfortunately, I haven’t found relief with the probiotics. I keep hoping! I will have to see which bacteria they contain. All I know is it has 12 strains, but don’t remember which ones.

      Thanks for your post. I can use all the help I can get!

  2. Thanks so much for sharing your story! I am on day 23 of paleo + auto-immune protocol diet. I have RA as well. Energy-wise I feel great, but my RA symptoms are still exactly the same. When did you start noticing a change on the paleo diet, may I ask?

    • Sorry this reply is so long in coming. I think it was a good 3- 3 1/2 months before I was feeling confident in what I was noticing. I probably started thinking I was better about a month in. It still seemed like there were a lot of ups and downs, but I thought overall I was doing much better. When my blood test results came back, then I realized it wasn’t just in my head. I still have symptoms, but they’re more the exception than the rule.

      The other issue that was complicating things was that I was in the midst of a several year flare. My ligaments and tendons got very stretched out from the inflammation. When the inflammation was no longer there, my joints were loose, which was sometimes causing its own pain issues. I guess you can’t really tighten up your ligaments, but you can tighten up your tendons, according to my doc. It’s all about exercise and getting muscle back.

      How are you doing now? Still hanging with it?

      Lori

  3. You mention a lot of what you cut down (and gluten is certainly the No1 perpetrator), but not what you added in your diet. This is one point that many Paleo dieters forget. They cut down the bad things, but they forget to add traditional foods to their diet. So I’ll have to ask: do you drink or cook with bone broth *daily* (very important to repair your existing RA problems), do you eat offal, fermented foods, sea vegetables, *wild* fish (farmed fish is often worse than no fish), lots of shellfish (particularly oysters, which are the No2 superfood behind liver), water kefir (if home-made casein A2 goat milk kefir is too impossible for your gut), lots of leaves like turnip/beet/radish/sorrel etc etc. Also, have you checked your D3 status?

    If your doctor approves, consider also supplementation CoQ10 Ubiquinol (not Ubiquinone, especially if you don’t do animal hearts), Magnesium (everyone in the Western world is deficient on it, even Paleo dieters), and fermented cod liver oil + butter oil.

    You see, cutting down bad foods will help stopping the inflammation, but if you don’t add these foods, you won’t be able to actually fully repair. So there’s two sides to Paleo, but unfortunately, the one that’s mostly promoted and discussed online is the one that removes foods, rather than the one that adds foods.

  4. Hi Eugenia,

    Lots of questions in there. Start with Vitamin D. I have been deficient in it and supplementing it for years, and it still stays low. I bought some more powerful Vitamin D pills recently and a small (25%) calcium supplement and promptly got kidney stones. Still working that out.

    I take magnesium sometimes at bedtime. I heard good things about it for sleep, but can’t say I’m noting any benefit from it, so I can’t say I do it routinely. I tend to get periods of insomnia, so will take it then, although this hasn’t happened in a long time.

    I have not tried CoQ10 yet. It may be on the list in the future, but isn’t a priority right now. No butter oil.

    I take fish oil (salmon oil, more precisely). I’ve heard mixed things about Cod Liver Oil, and have decided to stick with salmon oil for now. Early on, I noted big improvements when taking salmon oil (almost like taking ibuprofen). Currently, I don’t see much of any benefit, but when I have a bad RA day, I throw some back into my diet and try to eat more fish. Because we have pretty good fish and grass-fed beef sources, I think I’m probably maintaining my Omega 3 : Omega 6 ratio without it. At some point, I really hope to be growing my own fish at home. We’ll see if that actually happens.

    Fermented foods/probiotics: I am struggling here. They seem to set off my RA, and although I periodically retry them, the function of them doesn’t seem to be working for me, so for now, I keep them to a minimum. Sauerkraut seems to be the least damaging, but there’s only so much of that I can eat.

    What is your experience with Paleo?

    Lori

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