Friday, April 29, 2011

More notes on healing

I've now been on my leaky gut healing diet for 3 weeks (no fructose, no gluten, no processed carbs, no grains, no sugar/sweetener of any kind, no legumes, no nightshades, no nuts, no dairy, no fruit, no spices) and I was on a less limited but still strict diet for about a month before that. I find it easy to stick to - my cravings have all disappeared, and I don't feel particularly hungry. I eat 3 meals and a couple of snacks a day. It's easy to manage as long as I eat at home. In fact, it makes my life much simpler and easier. I eat a lot of protein (chicken, beef) which makes it satisfying, along with plenty of fresh vegetables cooked with olive oil. My snack food is a cooked mixture of quinoa with sunflower, pumpkin, sesame and chia seeds. I drink decaf tea with rice milk, and plenty of water.

I've been gradually feeling better, but the big difference kicked in about 5 days ago - and it's a huge difference. My brain fog is almost entirely gone - not totally, but close to it. I feel like I have my brain back - I can think clearly again, and that's wonderful! My dizziness and orthostatic intolerance have gone, the lethargy has gone. The 'general malaise' - just feeling sick so much of the time - has gone. My energy is up about 15% - 20% - I hope this will improve, but I'm not yet taking any kind of supplements at all, so I'm happy with what I have so far.

My noise sensitivity has improved, though not entirely disappeared. I’m still sensitive to sun. My stomach issues are much improved - no more bloating and gas, regular BM. Still have slight indigestion at times. Mouth ulcers have gone. Generally better able to deal with stress (still some work to be done, but it's improved). My mood has noticeably improved since I stopped eating fructose. I lost 8kg (17 lbs) between Nov-Feb, and have lost a further 5kg (11 lbs) since Feb – the weight loss was needed and is welcome. I feel much better for it.

I still feel very stiff and achy when I get up in the morning – no, it’s not age! My 86-year old mother doesn’t feel this. I still get some brain fog when tired, when talking to people or in a noisy environment. I still have some noise sensitivity, and can still get quickly unnerved in certain situations with only a little more stress than usual. I’m still resting in the afternoons, and still limiting my exercise. I still have some concentration problems, especially when reading; I still have an issue with temperature control – either feeling too hot or too cold very quickly.

I have tested positive for fructose malabsorption. My serological test for celiac disease was negative, but since doing the test my sister was diagnosed positive using the genetic test, so I am now having that done. It is possible to have both ME and celiac disease.

I tested negative on lactose malabsorption and IgG food antibodies – however I have heard that many people with ME (“CFS”) test positive on these. I’ve been diagnosed with ME/CFS according to the Canadian Consensus Criteria, and have been sick for four and a half years. It is generally acknowledged that there are different types of ME, so that what works for one person may not make any difference to another. On the other hand, it would make sense for anyone with symptoms similar to those of ME to get tested for celiac disease, fructose and lactose malabsorption, and IgG food antibodies. In most places your GP (primary care physician) should be able to order these tests.

 Had lunch out with family members today - first time to enjoy eating in a restaurant for several years. 


upnorth said...

Thanks for the update and so glad some of the dietary changes are helping.

I know being wheat free has helped me some but is by no means a cure.

Hilde, Norway said...

I happy to hear that it works and you feel better :-)

Nicky Reiss said...

Hi Upnorth!

I tried a wheat-free diet for 3 months about a year and a half ago, and it made no difference at all. I had also tried dairy free and Ayurvedic diets without any changes. That made me think that diet made no difference to my condition. However, finding a new doctor, getting diagnosed with leaky gut and fructose malabsorption, then my sister getting diagnosed with celiac, all persuaded me to try the far more extreme diet - and that's what is now working for me.

We are all different - I realize that what works for me may not work at all for others, and also that I may still have ME - only time and tests will tell.

@Hilde - thanks! Hope you're doing as well as possible.

Nicky Reiss said...

And for anyone who is interested to know more about my diet, this is what I'm eating now: I've cut out everything except: chicken, beef, eggs, specific non-fructose vegetables, olive oil, salt, quinoa, pumpkin seeds, sunflower seeds, sesame seeds, chia seeds, decaff tea and rice milk.

I make soup using the meat, olive oil and veggies and eat that twice a day. I eat 2 boiled eggs for breakfast. For snacks I have the quinoa and seed mix - occasionally I'll heat it up with some rice milk. I drink 3 cups of decaf tea w/ rice milk a day.

Using good quality fresh ingredients is key - then the soup tastes really good. It has also simplified my life, so I'm not using up energy shopping, cooking, and planning food.

I don't expect to be on this diet forever - I will see my doctor at the end of June for more test results, and will see a dietician soon after that.

greenwords said...

Very thrilled to hear you're feeling so much better, Nicky. Wonderful news! I'd be interested in the recipe for your quinoa + nut snack.

Nicky Reiss said...

Thanks, greenwords!

Quinoa snack:

1 cup quinoa (rinse first with boiling water)
2 tbsp pumpkin seeds (pepita)
2 tbsp sunflower seeds
1 tbsp chia seeds
1 tbsp sesame seeds
3 tbsp good olive oil
1.5 cups boiling water
sprinkle of sea salt to taste
(seed measures are approximate - adjust to your own taste)

Warm the olive oil in a heavy-base saucepan. Add all the quinoa and seeds and mix well, coating them in oil. Add the water and salt, bring to boil. Turn heat down to simmer, with lid on, for 15 minutes. Check that all the liquid is absorbed. Remove lid, turn off heat, fluff up the mixture and allow steam to evaporate.
Keeps well in the fridge for a few days; excellent for small snacks.
Can also be used heated with rice (or other) milk as a breakfast cereal.

greenwords said...

I love quinoa, that sounds delicious. Will try it soon. Thanks for taking the time to type it out!

Reading the Signs said...

Hello Nicky - I came here via Greenwords. This is very interesting and I suspect a diet such as yours would do me good also. I hope you continue to improve.

Carolyn said...

Hi Nicky I'm so glad you're new diet seems to be working. The fructose issue could be something I need to look into as well. Am already more or less gluten and lactose free.

Have had a rough couple of weeks digestive system wise, so know I need to tweak diet some more.

Have no idea what quinoa is, so will have to go look it up!!

Keep on keeping on x

Keena said...

food is my weakness. I'm not sure that I could go on such a strict diet. BUT, I guess if it would help it would be worth it. I'm glad that it is helping with you.