New To Forum/dealing With Celiac And Ra

[JamieSims]

I've been reading thru some of the links here and am gratified that there's lots of support for the gluten and lactose intolerant as well as advice for the different ways to cope. Thanx to everyone for advice given: past, present and hopefully future as well. I'll be reading for a long while.

Going gluten, lactose, yeast and wheat free is helping to ease a number of my symptoms considerably. Goodbye stomach agony. But I am now finding that I am increasingly dealing with rheumatoid arthritic symptoms. Due to the lack of support from my doctors (due to negative tests and told to destress), and finding that going 'celiac' as it were helped significantly, I have had to go about guessing and estimating my condition on my own. As alot of you would know I suspect.

The considerable fatigue and pain in my elbows and hands which I am experiencing I try try to remedy with my partner's assistance using a type of primitive lymphatic massage. Intense pain has me resorting to drastic measures such as stopping the blood flow in my elbows or hands for a few seconds. This has helped.

The thing is I have gone as far as I can on my own and I am falling behind in my job. I'm an apprentice techie. I may even lose my job if this keeps up. I need both my hands (all my joints actually) and my brains. I am loathe to ask a medical specialist considering the past treatment I have received. My naturopath has me on a new course of drops, as well as now committing to my new 'life diet' (food and high grade vitamin supplements), as it were.

Are any of you dealing with rheumatoid arthritis? Do you have pain in the glands in your neck which sets off that 'dirty high'?. When I am having a decent or full attack I am literally ghosting thru the day and feel like I'm on some sort of dirty drug high and can easily sleep 11 hours a night at least 4 times a week. I have resorted to strong pain medications at this point which does provide relief, but I am aware that my intestines are in a bad state and so is my immune system. So I keep the pain killers to a bare minimum.

I am going forward on the premise that RA is celiac related via leaky gut syndrome. Remedy the holes, repair the intestines, hopefully bye bye RA. But in the meantime is there something else I can try.

I apologise for the long winded letter, but would be grateful for your views, tips, or just even sharing your story with me. Thank you.

[chasbari]

I was dealing with severe RA before I was ever diagnosed with celiac. My rheumatologist wanted to put me on Dmards and antiinflammatory drugs. I resisted. When finally DX'ed with celiac I first tried the standard gluten-free diet which made me feel less worse but not necessarily that much better. I used to have two or more hours of gel time in the mornings and had a hard time getting out of a chair much less walking at any time throughout the day. Hand weakness was very bad. Long story short I went Paleo with the diet being careful to follow recommendations for anti-inflammatory diet guidelines as well avoiding all night shades, beans, peas, other legumes and peanuts. No potatoes, tomatoes or eggplant and peppers. My RA has been melting away and my numbers prior to diagnosis were extremely high... any titer over 17 is considered positive for RA and mine was in the 800+ range. Since going strict paleo I now have zero gel time in the morning and I can think straight and have much better energy throughout the day. The only supplement I take is a CAL/MAG/ZINC Vit D because of bone density issues. A year ago it was dangerous for me to even try to do anything involving gripping a tool for fear that something would go airborne and imperil someone nearby. Now I work with steel and welding and fabricating with no problem. Good luck.

CS

[YoloGx]

I have not been diagnosed with RA however I have had severe joint inflammation and pain as has my partner. He in fact gets so bad he can't even go out for walks, he has so much pain in his joints plus his skin becomes very painful.

However the following remedies have helped both him and me.

I agree with Chasbari, going on a diet without grains or sugars is very helpful. For us, we have also been helped by making and using the 24 hour home made yogurt suggested in the Specific Carbohydrate Diet (SCD)--of which there is a thread on celiac.com. After fermenting it for 24 hours all the lactose is removed and yet you get the benefit of high doses of probiotics. We use a plain Greek yogurt as a starter. For those that still can't handle that, there is a similar probiotic soured cabbage juice you might be interested in.

We recently went on a combined paleo and SCD but now are OK with an addition of some brown rice, however it took ten months to get here. I started a thread that I call "Back to the Basics" taking the middle path--in case you are interested.

Meanwhile, I have found for both of me and Graeme that the periodic use of a detox herbal mash really helps with joint issues and general well being. We combine dandelion root, yellow dock root and licorice root which we lightly boil for 30 minutes to make a pungent brew. I sometimes add cleavers which is a powerful lymphatic drain as well as good for the kidneys--but Graeme for whatever reason does not tolerate it.

Dandelion root is very good clearing toxins from the liver and the kidneys; yellow dock is a good systemic purifier as well as purifies and strengthens the intestines. Licorice root is an adaptogen that helps the effectiveness of the other two herbs; it also helps raise the blood pressure (you may or may not need this); and it is a good glandular in case you need help there too (Graeme has a low thyroid for instance and a tendency towards low adrenal function so it helps against that). Even just taking the dandelion root by itself should help if you find the other herbs not to your taste. Don't take any of the above detox herbs however if you get diarrhea since they do mildly help activate the release of bile and thus peristalsis.

I also suggest detoxing in other ways--saunas, mud packs (like with Indian Healing Clay on the hands and feet for 20 minutes) and exercise--swimming being one of the best to help with the lymphs and/or one of those rebounders. Graeme uses one of those simple small home stair master like pedal devices that have a dial resistance. Daily walks of course also help.

In addition, I have recently discovered that olive leaf tea or extract (obviously avoid any tinctures made with alcohol in order to avoid gluten) has really helped immensely with both my neck and low back and elbow pain. I also now sleep like a log rather than go through this whole rigamarole with nightly leg and foot pain. Initially I had a Herxheimer effect which means I felt much worse the first 3 days taking the olive leaf; however apparently that is a good sign indicating it is working. After that my body adjusted. Nevertheless I suggest you start slow and work your way up to a larger dose as needed if you decide to try it.

And yes, continue with lots and lots of vegetables! Am concerned though that you might not be getting enough protein. I have found chicken to be the easiest meat to digest. Some people swear by fish. Some combination thereof might be worth trying. Like you we are avoiding beans for the time being. Try taking plant enzymes by Now or some such equivalent with your meals--it may help with protein (esp. meat) digestion.

I also eat a lot of sunflower seeds since I can't digest nuts. Graeme in turn can't tolerate sunflower seeds but does well with sesame seeds which he grinds and makes into tahini (he still has to use just small amounts of it however). I don't know what your situation is but it might be worth a try. For some they need to soak seeds or nuts overnight first before eating.

Hope at least some of these suggestions help!

Bea