Page 1 of 7

Wahls diet for WED? Trying it.

Posted: Mon Apr 21, 2014 1:49 am
by badnights
In late Jan I ripped my knee apart and could no longer play hockey or broomball. In Feb, at loose ends, I signed up for 21 yoga classes in 21 days. I didn't realize that it came with a diet, but I was game. When I looked at the diet plan - no starchy foods, no this or that - I realized it was very nearly a gluten-free (GF) diet, so I decided to make it one. I had wanted to test going GF for a long time, ever since I learned of the connection between gastro-intestinal problems and WED (a much higher incidence of WED in people with celiac, Crohn's, IBS, etc) but I thought it would be very hard, very complicated.

It was not hard. Admittedly, I was on holidays from work at the time, so it would have been more difficult to get used to that way of living if I had been working at the same time. For that matter, I couldn't have managed one yoga class a day, either. I have very little energy because of WED.

I felt so much better, I had no daytime symptoms, and evenings were bearable. But keep in mind, I also quit coffee, alcohol (which I didn't use much of), and multiple other foodstuffs, plus I was sleeping sleeping sleeping.

I happened to have a doctor's appt, and happened to be seeing a different doctor because my regular GP was away for 5 months. This new doctor listened with interest to my improved symptoms and GF diet, and said she wanted to test me for celiac right away! (I had been denied a test 3 yr ago, being told it was too expensive). I returned to gluten for a few days before the test, then went off again after the test. My return was marked by a return of daytime WED symptoms within 4 hours of eating bread! And general feelings of malaise and bloating. But the return to no gluten didn't get me such profound results as the first time. Hard to interpret. And then to make it worse, I got a call from the lab saying the labels had fallen off the blood vials and I was among the people who had to get tested again. I ate gluten again for one day, then got tested a second time. This is the blood that was analyzed, and it showed that I had sufficient IgA to test but did not have antibodies to -- anyway I forget, but I do not have celiac disease.

So I decided to start eating gluten again. My WED was mildly elevated Monday, I started gluten again Tuesday, it was also mildly elevated Tuesday, it went nuts Wed Thu Fri. Hard to interpret those results. My doctor also recommended that I see a particular naturopath who specializes in nutirtion (god save me from the homeopaths), and that I read a book called The Wahls Protocol by Terry Wahls, an MD who developed multiple sclerosis, was confined to a wheelchair within a few years, but researched her own disease and diet and ended up walking and running again, and now is taking her diet through a series of clinical trials.

I went to the naturopath, who asked lots of questions and explained stuff about the gut, and about tests that can be used to check for different problems (this was in stark contrast to the homeopathic dude, who looked on the internet for varieties of water that matched my symptoms - from feeling like I was being tortured to being cold all the time - and prescribed a water that had been shaken with a water that had been shaken with a water --- 100 times of this - that had touched a crushed spider).

I also bought the book, and I'm partway through it.

The gist of what I'm learning, and I admit I haven't looked up anything myself, or not much, to see how much backing this has in the conventional-medicine community, is this :\

We eat carbohydrate-rich and sugar-rich diets. The carbs break down into sugars. Bacteria and yeast that eat these sugars grow in our small intestines at the expense of good bacteria that would otherwise be there, and - only in genetically susceptible people - these bacteria and their byproducts (because they too have wastes) damage the control mechanism that keeps the barrier between the gut and the blood closed. Undigested particles of food leak into the tissues and bloodstream - like, entire molecules of gluten or casein, which come from wheat and milk respectively. This is fine in some people, but in others - again, genetically susceptible ones - the immune system over-reacts, and instead of just attacking the gluten or casein, attacks also the small intestine.

Then the situation may escalate, because although it probably begins with gluten and casein (very similar to each other - many celiacs are lactose intolerant too), once the gut is leaky, large molecules from other partially digested substances - strawberries, nuts, eggs - also start leaking into the blood, stimulating immune responses. This is how food sensitivities develop. Those large molecules are not supposed to be in the blood, they are supposed to have been digested further into smaller components that do belong in the blood.

Another way the guts can get leaky like that is by taking heavy doses of antibiotics, which kill many of the natural flora and fauna in your guts, leaving room for the bad guys to grow.

Another way the immune system can be hyper-stimulated is if you have a lingering low-grade chronic infection, the remains of an infection that was supposedly dealt with long ago, but it really was just reduced, and learned how to hang out in your tissues in disguise, so to speak. When the infection pathogens come across inflamed tissues - a sciatic nerve being pinched, or a pulmonary infection - they settle in and begins to reproduce. The immune system notices it, but because the infection has disguised itself as you for so long, the immune response might turn into an auto-immune response, in which the immune system attacks its own body as well as the pathogen.

The immune system once over-activated can attack lungs (asthma), skin (rashes), neurons (MS), etc. WED is not known to be am auto-immune disease, but the author of the Wahls Protocol suggests that all chronic disease can benefit from being addressed by diet, because at the root of it, almost every chronic disease is a manifestation of the body's cells not having the proper nutrient chemicals to repair themselves and to generate energy.

The crux of the diet is to give your cells the nutrients they need (to repair the leaky gut, to keep balanced populations of good gut bacteria, to provide energy, to repair all damaged tissues, to re-instate biochemical processes that have broken down for lack of the right fuel); and to avoid toxins, or anti-nutrients.

There are three levels of diet, but I'll just describe it generally.
- - You cut out gluten and casein - that is, wheat free, rye free, barley free, free of all gluten; and milk, cheese, yogurt free - free of all dairy.
- - You eat 9 cups of vegetables daily. That includes a bit of fruit. You divide it equally among green leafy veg (kale collard, spinach, etc), brightly colored veg (peppers, beets, more) and fruit (berries are the most useful fruits), and sulfur-bearing veggies (cauliflower, cabbage, mushroom, onion). Each class of veg has key compounds that are essential to cellular nutrition - eg. phtyochemicals, B vitamins, anti-oxidants, etc. and she lists what each one does - essential for building the myelin sheath on neurons, essential to build the cell membrane, etc.
- - You cut way down or don't eat starchy veggies and GF grains. (so, limit or eliminate rice, potatoes).
- - You eat quality protein preferably from meat because it's low in carbs, preferably wild game or grass-fed meat and wild-caught fish - the reason for the wildness is to reduce the amount of toxins deriving from antibiotics & hormones given to farmed animals, and to increase the ratio of omega 3 to omega 6 which is too low in grain-fed animals. Also get small fish over big fish, they will have less toxin buildup.
- - Finally eat lots of nutritious fat (coconut oil, etc), the point being to convince the body to burn fats instead of carbs for energy.

I have just decided to try the second level of her diet, which allows me some GF grains and legumes. I thought I could leap right into the final level, but she warns of possible gastrointestinal upset if you do that. And I started to feel lonely and confused. No microwaving! Whatever shall I do? Microwaves heat by altering the molecular structure, which might interfere with the nutrient value of foods, so better safe than sorry. Gee, like the bad old days. And fasting for 12-16 hours every night. That one's hard. And preferably only 2 meals a day, with a mini-fast in-between. I haven't finished reading the book, so I will take it easy on myself and allow GF grains for now, and the length of the fast - I think I need to work into that.

Re: Wahls diet for WED? Trying it.

Posted: Mon Apr 21, 2014 3:40 am
by ViewsAskew
Looking forward to hearing your results. Though we're GF due to celiac, we meet a LOT of people in our local celiac groups who are GF for other issues and who believe in leaky gut theory. I tried following a similar approach about ten years ago, assuming my issues were leaky gut related. I didn't find it helped me, but I don't have a problem such as Wahl. It's a lot harder, I think, to be sure of positive results for less well -defined issues.

Hubby had high blood pressure, so we've been following the DASH diet - dietary approach to stop hypertension. What I really like about it is that 1) it's an easy chart to complete, and 2) is reminds me how many veggies and fruits to eat each day. For me to maintain my weight, I have 5 servings of veggies and 4 of fruit. This diet allows me 5 servings of lean protein (5 oz), 2 servings of nuts, 3 of dairy, and so on. From the first day we started, we realized very quickly how often we turned to carbs - even if there were "healthy" ones, such as quinoa or whole grain such as oats. They say to make sure at least 1/2 of the servings are whole grains, but even so, each day for the first week, we both reached our limit of carbs before dinner! I've really had to change how I eat to get the veggies and fruits in, instead of loading up on carbs.

Re: Wahls diet for WED? Trying it.

Posted: Mon Apr 21, 2014 9:19 am
by badnights
I had no idea that carbs could be an issue. I am sad to see my happy new grains like quinoa and millet go. I didn't even get to try making teff bread!

I notice I become ravenously hungry at the same time of night that I lose my brain fog and regain my mental acuity. I have to explain later, I need to sleep now.

Re: Wahls diet for WED? Trying it.

Posted: Mon Apr 21, 2014 9:16 pm
by ViewsAskew
badnights wrote:I had no idea that carbs could be an issue. I am sad to see my happy new grains like quinoa and millet go. I didn't even get to try making teff bread!

I notice I become ravenously hungry at the same time of night that I lose my brain fog and regain my mental acuity. I have to explain later, I need to sleep now.

Now, that is VERY interesting.....I often eat about that time....have assumed that because I get up late, this is my "natural" dinner time. But, maybe that's not it...

Re: Wahls diet for WED? Trying it.

Posted: Mon Apr 21, 2014 10:55 pm
by jul2873
My daughter, because of various health problems, went completely gluten and dairy free about two years ago. When I asked her how soon she felt better, she said, "The next day!" She'd been diagnosed with fibromyalgia, as well as various stomach upset and pain, and hadn't been well in years. We put much of it down to a traumatic time in her childhood (teenager down the street sexually assaulted her many times and convinced her not to tell anyone). It seemed to start then. By the time she was a teenager she had migraines, and various other issues.

But she's a tough kid and managed to keep going--finished college, got married, has a darling child, worked etc. But now that she is staying gluten and dairy-free, she feels really good. She's jogging a couple of miles a day and just always seems upbeat. It's been a miracle.

So I've been thinking--with the WED and with my asthma--I should try it too. Well, this book has convinced me. I'm going to just try the gluten and dairy-free--which will be hard enough! So thanks for the encouragement, Beth.

Re: Wahls diet for WED? Trying it.

Posted: Tue Apr 22, 2014 4:20 am
by badnights
Well, I know the author of the book would almost guarantee you good results. I Don't think she would actually go that far, being a cautious medical sort, but she really has me convinced about these things. I Can't quite trust myself, because I know I'm in a state in which hope might silence common sense to some degree, so I try to be as objective as possible. But it makes so much sense to me.

Today - already - I have broken the diet :) I got invited to go ice fishing, and our hosts afterward made supper - fried fish, and fried potatoes, and veggies. I broke the level-two diet, but I was still compliant with level 1. I don't think I have a problem with the level-2 diet per se, but I need to learn how to explain what I'm doing to people in some way so that I don't worry about sounding like a nutcase jumping on a fad. I don't need them to understand - I just need to learn not to care.

She says that vegetable oils when heated lose their omega-3's, and also can form trans fats. So every time I think I being all healthy cooking with olive oil or walnut oil, I'm eating trans fats, potentially. Gee! The only stable fats to cook with are animal fats (lard, clarified butter) and coconut oil, which breaks down at a much higher temperature than we cook at.

Today I ate food fried in vegetable oil. (It was delicious).

I am finding that the hardest part is to eat 6 oz meat every day. I unintentionally stopped eating much meat, never thinking much about the things I might be depriving myself of: omega 3's, essential amino acids, various vitamins and minerals, and other substances like glucosamine and collagen. And how important is fat to a healthy brain made of neurons, each one covered in a fatty myelin sheath? Human brain is 60-70% fat (I have not corroborated this, it's from the book). So how do I think I can be healthy without eating it?

Am I sounding like a gullible convert to a fringe religion?

Re: Wahls diet for WED? Trying it.

Posted: Tue Apr 22, 2014 4:27 am
by ViewsAskew
badnights wrote:
Am I sounding like a gullible convert to a fringe religion?

I laughed when I read this. I'll let you know in a few weeks :-).

Re: Wahls diet for WED? Trying it.

Posted: Mon May 19, 2014 7:16 pm
by badnights
The Wahls diet
As it turns out, Level 3 of the Wahls is way too overboard for me, at least for now. It is designed to place you into ketosis, that is a state where you're burning fat as your primary food source, vs. carbohydrates, so there are zero carbs and a lot of fat at level 3. It's very good for otherwise-intractable epilepsy, and her initial trials are showing benefit for MS as well, so she anticipates it might benefit other neurological disorders. She even mentions RLS/WED!

I am sticking with level 2, which says to eat very few carbs, 9 cups of veggies a day, and 9 oz meat daily which should be fish twice a week and organs twice a week.

I try to sense if I'm feeling better, after 3.5 weeks on this diet. I can't. I still have days when I have symptoms all day long. But I can look back and recall that I had all-day symptoms every day for over a year, and now it's just a sometimes thing. I am accomplishing more at work and at home. (but is that just a phase? a pretty darn good one, if it is). I even fell asleep and slept the entire night once without a zopiclone. (I tried to do it and failed, a number of times since.) I have also cut back to half a zopiclone on about half my nights. So there are some signs that something might be helping.

The book says it may take 3 months to see results. That's the point at which they switch patients in their clinical trials, if they're having no luck, to the next higher level of diet.

My medical doctor recommended the book but I don't know if she intended me to actually follow the diet! So I'll be interested to get her take on this. She also sent me to a naturopath for SIBO tests (small intestinal bacterial overgrowths). I am very leery of naturopaths, especially considering that even the scientific ones like this one had to study homeopathy to get their degrees. Homeopathy has been proven to be a crock time and time again. But... this one, as I said, leans toward science.

The Naturopath - food sensitivities
She took a long and detailed history, urine and blood samples. The blood was for food sensitivities, which came back negative except borderline for wheat, eggs, dairy, and cane sugar. She wants me to re-introduce those into my diet gradually, as a challenge (to see if there's any bad effects). Then I can go off them again if I want to stick to the Wahls protocol. How the heck do those sensitivity tests work? I used to think they were BS because they only showed up the things you were eating anyway, but my GP explained that they can show if your body is attacking various large molecules that derive from your food. If it is, then you have two problems, the primary one being a leaky gut that lets molecules that are too large into your bloodstream, and the second being that your body is overreacting to the substance.

Urine tests - omg I am falling apart and the bugs are eating me already
The urine tests are where my results get interesting, and even scary. They test for various substances. Some are metabolites of certain families of bacteria or yeast. If you have those metabolites in your urine, that means (according to the naturopaths) that you have bad bacteria or yeast inside you, and their micropoop (their waste products, technically) are getting into your blood, and from there, your urine. The urine tests also include a test for chemicals used in cellular reaction pathways that have a lot of steps. So if you have a buildup of one chemical from that pathway, it means that a factor needed to react with it in the next step is missing. Other substances tested for will show evidence of toxins or parsites in your body.

I have just about everything wrong that they test for. I have overgrowths of bad bacteria and yeast, in both large and small intestine, of every bug they tested for but one, and even of good bacteria, which accounts for why I shat rivers when I drank a probiotic drink - I already have unhealthy amounts of lactate-producing bacteria inside me.

I tested positive for a number of substances that indicate my body is trying to remove toxins, and failing, including one that may instead indicate parasites; that I have been subjected to continuous xylene exposure (?? from the pest glueboards that have been stored in my house since 2008?), that certain of my neurotransmitter are being produced at an abnormal rate (or broken down ? have to check), that my cell turnover is high which creates a cancer risk, that my ability to break down fats is severely impaired. I am severely deficient in biotin and probably in other B vitamins involved in breaking down protein (among other things), I am probably deficient in Mg, and my ability to generate energy at a cellular level (ATP) is impaired. The only thing good was that I can digest carbohydrates - which I just removed from my diet!

Is it real?
I haven't looked into all of these tests yet. I have confirmed the biotin one by minimal research, so I conclude that I am genuinely deficient in biotin. Or at least, I was when the tests were done, which was prior to starting the Wahls diet.

I also learned on the interweb that the test that says I have oxidative damage to my DNA can also mean that I have an unusually high metabolic rate, which I do. Why I do is another question altogether; I didn't always. But I can now eat 12 cups of veggies a day, and 9 oz meat, and I'm still hungry and devour various peices of fruit and those Paleo-fudge snacks I'm permitted on the diet. I don't know when this cavernous capacity for food started, but it's been around for at least a couple of years, so it's not an effect of the diet.

I obviously have to look into these tests a lot more to understand them better. I admit, I was a bit freaked walking out of there, thinking of my cells failing, reactions stalled inside me, toxins building up, bacteria and yeast partying it up, and so on. Get a grip! I don't even know if these tests are valid!

If they are, why isn't everyone doing this?

What next?
I see the naturopath again on Wed to continue discussing the results and to get some recommendations. She said the medical world would give me antibiotics, but there are other ways to re-establish the right flora and fauna in my gut.Hmm.I will have to request a parasite screen from my GP, that's all I know for sure.

I can't wait...

Re: Wahls diet for WED? Trying it.

Posted: Tue May 20, 2014 4:21 am
by ViewsAskew
I honestly do not know how you can assess some of this. My guess is that there isn't a whole lot of research (read: quality research) to support any of it. If you do look up any, I'd love to hear what it says.

Re: Wahls diet for WED? Trying it.

Posted: Tue May 20, 2014 9:28 am
by cornelia
I think that everyone has to try what he/she wants to try but I totally agree with Ann: as long as there isn't any decent research done for this diet in relation to RLS I personally won't try it.


Re: Wahls diet for WED? Trying it.

Posted: Mon Jun 23, 2014 12:50 am
by badnights
I've been a lot better since about Feb, which was when I started spending time on my food. But what is the reason? I am suspecting gluten and dairy, tentatively. I was basically vegetarian for Feb ( a yoga diet) but also gluten and dairy free; then I was eating meat and dairy and cooking with rice and legumes (ie complex carbs), and for a bit I was back on gluten; then in March or April I went on the Wahls diet - no gluten, no dairy, no eggs, less than 2 servings per week of grains or legumes (complex carbs), and lots of veggies. I have since brought wheat back in for 3 days as a challenge to see how I take it, and dairy separately, with unpleasant effects both times (bloating, diarrhea, stabbing gut pains after eating or before pooing, exhaustion, slight headache, slight sniffles). I was unsure before that but am fairly certain since then, that wheat and milk are bad for me, with one caveat: can my body get un-used to them after not eating them for a long time, and then have a reaction for a few days which would go away if I kept eating them?

Frankly I have no temptation to keep eating them to find out. It has been that nice on this diet. Until last week, I didn't even have strong daytime WED anymore. I had a rough three days thur-sat, probably stress-induced?, but am feeling much better today. I keep meaning to research this Wahls diet better. A doctor recommended it, which tends to make me lax about checking into it. I have done a quick search and can't find anything concrete either for or against. She is supposed to be running her diet (of all thing!) through clinical trials at U Iowa but she has not published anything beyond her own case study, a study of electrical muscle stimulation in MS, and a small open-label study of the combined effects of diet, massage, mediation, and EMS on fatigue in MS patients. (The latter from pubmed is below) Clearly, something documenting the claimed effects on mobility and other physical functionality in MS patients is missing so far.

I am still waiting for an appt with the doc who recommended the book and sent me to the naturopath(!), to get her take on all the tests that were done. She sent me to be tested for intestinal bacterial overgrowths, but I got tested for lots of things, most of which my regular GP has never heard of. (But she did not reject them outright. ) I didn't have time to ask her about the overgrowths tests.

Background: Multiple sclerosis is an autoimmune disease influenced by environmental factors.
Objectives: The feasibility of a multimodal intervention and its effect on perceived fatigue in patients with secondary progressive multiple sclerosis were assessed.
Design/setting: This was a single-arm, open-label intervention study in an outpatient setting.
Interventions: A multimodal intervention including a modified paleolithic diet with supplements, stretching, strengthening exercises with electrical stimulation of trunk and lower limb muscles, meditation, and massage was used.
Outcome measures: Adherence to each component of the intervention was calculated using daily logs. Side-effects were assessed from a monthly questionnaire and blood analyses. Fatigue was assessed using the Fatigue Severity Scale (FSS). Data were collected at baseline and months 1, 2, 3, 6, 9, and 12.
Results: Ten (10) of 13 subjects who were enrolled in a 2-week run-in phase were eligible to continue in the 12-month main study. Of those 10 subjects, 8 completed the study and 6 subjects fully adhered to the study intervention for 12 months. Over a 12-month period, average adherence to diet exceeded 90% of days, and to exercise/muscle stimulation exceeded 75% of days. Nutritional supplements intake varied among and within subjects. Group daily average duration of meditation was 13.3 minutes and of massage was 7.2 minutes. No adverse side-effects were reported. Group average FSS scores decreased from 5.7 at baseline to 3.32 (p=0.0008) at 12 months.
Conclusions: In this small, uncontrolled pilot study, there was a significant improvement in fatigue in those who completed the study. Given the small sample size and completer rate, further evaluation of this multimodal therapy is warranted.

Re: Wahls diet for WED? Trying it.

Posted: Mon Jun 23, 2014 1:32 pm
by Rustsmith
Background: Multiple sclerosis is an autoimmune disease influenced by environmental factors.
Objectives: The feasibility of a multimodal intervention and its effect on perceived fatigue in patients with secondary progressive multiple sclerosis were assessed.

Beth, could you provide a reference for the MS study so that I could see more of the details?

In my case, my wife and I both started low carb diets at the beginning of the month. Both of us have neurological issues, in her case secondary progressive MS and for me it is WED and migraines. She is eating a diet based on 25 g of carb/day and I have a 50 g limit. Her primary justification is an attempt a weight loss and my diet is one that has been researched for endurance athletes. We have lots of veggies and replace the carbs with various forms of fat. The key is the mixture and selection of sources of the proper kinds of fat.

After one month, I do not think that the diet has had any impact on my WED. When I get breakthroughs of my current medications, the WED symptoms are generally as bad or worse than before. However, I have seen a dramatic improvement with my migraines. I have gone from 1/week to 1/month, which is reason enough to keep avoiding all the sweets that still are sitting in the cupboard.

Finally, I started this with the goal of changing my diet to boost my abilities for distance running. The idea is that by being in ketosis I will avoid hitting "The Wall" in runs over 20 miles. So far I cannot say that I have seen any change, which is good since it is too hot now to do the long runs where I will see a difference. I was worried that the lack of carbs might the power that I need for my summer time short distance racing, but it hasn't been an issue.

Re: Wahls diet for WED? Trying it.

Posted: Sun Jul 06, 2014 12:07 am
by peanut1
This is amazing and I think I'm going to buy the book. I also cannot eat grains or the excitotoxins as it makes the WED go crazy. I also noticed that after several antibiotics and also high doses of vitamins that the WED went severe. Not to say that is what did it.. I'm not sure. But this is something else to try and I was also looking at trying one of the reputable natropaths here. Although I did have a bad experience with the last naturopath.

Re: Wahls diet for WED? Trying it.

Posted: Wed Aug 13, 2014 1:23 am
by peanut1
OK, I must admit I didn't really give the Walhs a try because something else is working for me. I will say however, that any GRAIN, or MSG products (yah the ones with glutamate activates the WED something fierce. But I'm curious to know if you are still sleeping better with this or has it magically taken the WED away?

Re: Wahls diet for WED? Trying it.

Posted: Tue Sep 16, 2014 7:28 pm
by debbluebird
Beth, just wondering how it's going for you. I decided a week or more ago to eliminate wheat (any gluten), sugar, night shade plants, processed foods, dairy, the wrong fats and a few other things. My reason was that since I've been on thyroid medicine, my stomach is sick when I eat that stuff. I think it's been that way all along, it's just worse now. Also I was hoping that some of these things would help with inflammation in my body and my arthritis. I can already see a difference with my stomach. If it helps my WED/PLM, then that would be a bonus.