I'd encourage you to give gluten free, if not ketosis, a better try. Gluten free really could affect your pain levels but you'd need at least a few months to know.I applaud anyone trying this. I just tried strict Keto diet for FM for two weeks, hated it, went against my 68 years of continuous grazing. I was in ketosis the last five days, screwed up by eating 0 fiber and carbs and ended up with almost obstructed bowel and nasty consequences. Constipation is a real problem with this diet IMO. I had been trying to drink a lot and take magnesium but did not help. My new Keto cookbook arrived right after I got back from the ER, off the diet! Since all of my inflammation markers have always been near zero, I didn't really expect diet to work for FM pain relief anyway. I am chronically underweight so losing five more pounds, probably water, was also a bad effect. The only good news for me was that by simultaneously giving up gluten and carbs on the diet with no impact, I determined I can eat as much crap as I want without apparently affecting FM symptoms because they continued awful on the diet. Next week, hypnotherapy trial for pain, then will try float therapy, last option before unwanted OxyContin.
Let us know how you go Steve.I applaud anyone trying this. I just tried strict Keto diet for FM for two weeks, hated it, went against my 68 years of continuous grazing. I was in ketosis the last five days, screwed up by eating 0 fiber and carbs and ended up with almost obstructed bowel and nasty consequences. Constipation is a real problem with this diet IMO. I had been trying to drink a lot and take magnesium but did not help. My new Keto cookbook arrived right after I got back from the ER, off the diet! Since all of my inflammation markers have always been near zero, I didn't really expect diet to work for FM pain relief anyway. I am chronically underweight so losing five more pounds, probably water, was also a bad effect. The only good news for me was that by simultaneously giving up gluten and carbs on the diet with no impact, I determined I can eat as much crap as I want without apparently affecting FM symptoms because they continued awful on the diet. Next week, hypnotherapy trial for pain, then will try float therapy, last option before unwanted OxyContin.
You may want to check Seagreens (sold by Oceans of Goodness), they have a superb supplement with natural iodine.I recently landed in the hospital with a diagnosis of a-fib, and through my research have found I have low thyroid and Hashimoto's disease with Wilson's Syndrome (not to be confused with Wilson's Disease). Those brought on the a-fib, but the doctors were focused on that even when I begged to see an endocrinologist. I went home with a remote heart monitor and a Rx for Flecainide, which settled my heart and works very well.
I can't get into the endocrinologist for another month, but the problem with getting diagnosed is that many of us have what traditional docs call a "normal" thyroid level. Further testing is needed and is only available through functional medicine. I did see a FM doc and he wouldn't even have a discussion with me without a check for $7000!
After further research, I went gluten-free and paleo in addition to diet requirements for the natural healing of Hashimoto's. I am better -- not well yet, but some horrible symptoms have calmed down and I am improving. I was so sick I lost 25 pounds in three weeks and am still losing because of having trouble eating. I have a lot of nausea and nothing looks good. Hypothyroidism and it's maladies are estimated to be undiagnosed in 30 million people, and is linked (discussed) in the studies and research of many integrative medical professionals with CFS.
I will like to research your site to see if you have any information on this. If not, I would be happy to provide an article if you take freelance works. I am working on writing up my findings now, and they include government studies going back many years on the viability of Wilson's. Treatment for all of this is not best using traditional T4 medicine, but using T3 or a combination of both.
I found my interest in diet and hypothyroidism by skimming some comments on a Facebook page. I read someone's complaint about losing the end fourth of their eyebrows! It stopped me because I couldn't figure out why that has happened to me, plus other loss of head hair. I blamed it on Lupus.
I will look into the Keto diet and see how it compares to what I'm doing. I hope it will add some comfort to my symptoms.
Note: people with hypothyroidism usually gain weight and have trouble losing it. I was in that boat in the past a couple of times -- never a large person, but certainly enough overweight to be uncomfortable! I believe the only reason I am losing so much is just from the fact that I can't eat. I'm sure that will change if I can get help. I actually thought I was dying, the symptoms were so bad. I've got too much to do to leave right now!
Thanks for the post and interesting information. If anyone has any insight for me it will be greatly appreciated. While I can read and research all day, communicating with someone who has these diseases and syndromes would be awesome.
That's great to hear Veronique. Thanks for sharing your experience and the links.I, too, have had a major sweet tooth my whole life. I've become increasingly intolerant to carbs and after years of reducing intake without improvement I finally bit the bullet too.
I first tried a very restricted type of autoimmune-paleo diet (AIP) / GAPS diet for a little over 2 years: mainly broth based meals with meat or fish and mostly green or very low carb veggies. My fatigue didn't change but many of my other symptoms did calm down a bit (such as symptoms I associate with "acidity" - dry mouth, dry sinuses, dry eyes, cystitis somewhat, restless legs, hemorrhoids). My disproportionately large belly / dysbiosis eventually shrank for a few months but my symptoms of IBS continued to gradually worsen. And I lost 17 pounds, which was the least I've ever weighed as an adult, and developed that wasted chronic illness look.
My food limitations continued to worsen, however and even foods like cabbage and green beans started triggering symptoms. 6 months ago I changed to a keto-type diet called Zero Carb (ZC does none of the keto diet testing) and it has made a big difference, especially in my energy levels. I can do a little more than I could before although I'm still on the ME/CFS "leash" in which I can't do more than a certain amount without getting overtired. I've gained the weight back (which seems good) and filled back out. My IBS has started to improve even though it still has a long way to go.
I had a period of detoxing during the adaptation phase with both approaches and am grateful for the 2 years I first did with the AIP. It's tough when our systems already seem quite maxed out.
It took 3 months or more to stop having cravings on ZC but that's a first in my life. My symptoms of systemic candida and SIBO remain and I don't think this will be a cure, but it sure helps to have a further reduction in symptoms and flares. I feel like it's buying me time while I continue to work with other approaches that are very slow.
Here are some of the links that inspired me and that provided info since it looks at first glance like a crazy and drastic dietary change. But people have done extremely well on it for 8, 10 and 50 years (whether for weight loss or for other symptoms such as type 2 diabetes) as did populations such as the Eskimos and Icelanders way back when.
These are the two stories that first caught my eye:
The ZC FB page has lots of info (it's the most supportive FB group I've ever expereinced) - you have to request to become part of the group since they get a lot of flack:
Agreed. I think one most people would agree with is that anything that really ramps up your symptoms be careful with. With the keto diet you could be in a transition period; on the other hand, maybe the diet really isn't right for you. Slow as you go is probably the safest way to go.I've said many times on here that going gluten free gave me my life back for years. I thought it had cured my problems with fatigue, dizzy spells and brain fog completely until excessive exercise, on medical advice, caused a very significant relapse and a diagnosis of ME.
The Atkins diet, however, made me feel so ill that I abandoned it after days.
Now I eat gluten free except when travelling, when I take digestive enzymes that help to digest gluten. I supplement with 50mg vitamin D in winter and take calcium/magnesium supplements fairly often. I take N-acetyl cysteine and eat beef and carrots regularly for the carnitine and vitamin A. This is by no means a cure but my relapse meant I was bed bound for a time and this slowly got me back to a position where I can get outdoors and do a little. I take additional magnesium from time to time and will soon order another 25 kgm sack of epsom salts as magnesium baths means you get this without the diarrhoea.
I do encourage everyone to experiment with dietary changes to see what helps them but be careful not to overdo it if you start to feel better.
I'm probably in between too and its definitely helping. It's been about a month and I expect my progress to continue. As I remember it took Walls quite a while to see the full effects.I'm not really on a ketogenic diet. More like a paleo cause I'm not cutting that much carbs. But I'm eating like LOTS of fats on eggs (4 a day), ghee, olive oil, salmon, avocado, cashew nuts, almonds, chicken with skin etc. Only healthy fats.
Plus totally cut out sugar, dairy, gluten and any processed food.
No exercise, other than walks and long period standing on social ocasions.
And my body never looked so good. I'm look thin/athletic, my body fat is 2% lower the average, and I have more muscles than ever. I think my diet is a big part on my recovery. I'm on the edge of transitioning to keto, but I'm hanging on for now.
Ps: Also cut grains recently. Looks like it helped with my bowel movements. No diference on pain though.
Haha...I feel the same way about carbohydrates!!So Tatt,
How long do you think a trial off of gluten should be? As mentioned above, I lasted two weeks on Keto diet, also without gluten and sugar by default. My FM pain was awful, really rainy week but no positive difference due to diet. I read someone who said you need two years gluten free trial. I'm 68, could be dead then without eating the delicious strawberry rhubarb pie I just had two pieces of with no ill effects I can tell, other than to my teeth, maybe.