Part V: Nutritionist & Turning Point

On my first visit to the pelvic health center they suggested that, in addition to going to treatments at their facility, I see a nutritionist and a psychologist. They explained their center uses an holistic approach to healing. After I got past the "so you think I'm fat and crazy" reaction (sorry, but this is really how I felt at first), I realized that it couldn't hurt for me to follow their advice. It could even be a good thing.

I have lost 14 pounds since February, 8, 2011. That's 14 pounds in 11 weeks! What's even better is that I have not been on a diet of deprivation (i.e., starvation), nor have I had to go hungry or eat just small bits of "rabbit food" (i.e., tiny salads). I am eating as much food as I want (without overeating), and I am still losing weight. The trick is that I have changed what I eat.

As I mentioned in a previous post, PCOS and Pre-Diabetes, I was diagnosed with insulin resistance in January as a result of my PCOS. I started taking a medication called metformin to help with the condition, but I did not really see any results after a month.

Even before my first appointment with the nutritionist, I started a new diet program in February (they actually call it a "lifestyle change") through my work. The basic concepts I took away from the program were to:

• cut sugar intake -- no sugar in the first few weeks of the program, then in moderation after that; when having anything with sugar, it must be with a meal that includes protein (this helps the blood sugar and insulin levels from spiking)
• eat protein at every meal -- protein will keep you from feeling hungry for longer periods of time
• keep the size of your stomach in mind -- while the program did not focus on portion control, it explained that the human stomach is naturally about the size of a loosely held fist; somehow knowing my stomach really isn't that large keeps me from eating too much
• eat more slowly -- eating slowly will naturally cause you to eat less because your brain will feel satisfied sooner
• stop eating when satisfied -- which is before you have overeaten

The program lasted 10 weeks, so there are many more concepts that were covered; however, the ones I listed are the ones that have stuck with me. What made this particular program so doable was that it did not tell you specifically what to eat or not to eat (other than the sugar thing). Just cutting sugar (desserts, sweetened snacks, sodas, sports drinks, and anything else with sugar added),  allowed me to lose four (4!) pounds in the first week alone.

I saw my nutritionist a couple weeks after I started the above program. He agreed that I should not be eating any sugar. He also strongly believed that many of my problems were rooted in gluten sensitivity. Though skeptical at first, I embarked on a gluten-free and casein-free diet. (See my post Gluten-Free Me?! And Casein, Too? to read about the start of my gluten-free diet.) In my second appointment with the nutritionist, he gave me a personalized diet and supplement plan.

The main points I've taken away from my nutritionist's plan for me are:

• No gluten
• No casein (milk-derived products, including butter, creamy dressings and sauces, etc.)
• No sugar -- in addition to the obvious, this includes fruit drinks, fruit jams/jellies/preserves, and random food items with sugar added (reading food labels is more important than it used to be); I am allowed to have dessert about half a dozen times per year on very special occasions (such as my birthday, my husband's birthday, and special holidays)
• Eat more veggies and less fruit -- fruit contains so much sugar that it can act like a dessert and spike sugar and insulin levels; if I eat fruit, it is always as part of a meal along with a protein and healthy oil
• Eat the three macronutrients at every meal or snack -- protein, healthy oil high in omega-3's (like olive, almond, or avocado), and a complex carbohydrate (like spinach, other veggies, beans, etc.)
• Take supplements -- he gave me a pretty extensive list, but the most significant change was to take huge amounts of pharmacy-grade omega-3 fish oil (interestingly, I was already taking most of the supplements the nutritionist recommended; I will list my current supplements in a future post)

Because of my huge improvement in the way I feel, I have no doubt that I needed to go gluten and casein free. I have much more energy and am the closest to feeling truly healthy than I have ever felt since getting sick with CFIDS about ten years ago. I never imagined that just changing the way I eat would help me so much.

Embarking on this "extreme diet" has been easier than I anticipated. Don't get me wrong, it's been challenging and sometimes maddening; but it's been worth it. I think I was just so desperate to start feeling better and so tired of being sick and tired for so long, that I was ready and willing to make such a big life change. It took me about 8 weeks before I started to feel a big difference, and now that I am seeing so much improvement, I don't want to stop. I see the light at the end of the tunnel. For the first time in a long time, I am starting to believe that I will get better.

Interestingly, because my genetic test showed that I had two copies of a gluten sensitivity gene, it meant that both my parents gave me the gene. I told my parents about my results, and they decided to go gluten-free, too. Incidentally, they are feeling better on a gluten-free diet.

I can't say that my healthier eating habits have directly helped my vulvodynia, but they have certainly helped so many other aspects of my health. I'm amazed.

Gluten-Free Me?! And Casein, Too?

Yet another issue that people with ME/CFS often battle is irritable bowel syndrome (IBS). I certainly have digestive issues. I've been diagnosed with IBS and acid reflux; I also have a range of nutritional deficiencies (vitamin D, iron, B2, CoQ10, glutathione) that I treat by taking supplements.

I alluded in a previous post that I am currently on an "extreme diet." I'm in the process of going gluten-free. For a cereal, bread, cracker, pasta, and dessert lover like me, going gluten-free is extreme.

Not long after I cut sugar from my diet, my physical therapist (I'll explain why I have a physical therapist in a future post) recommended that I see a nutritionist. The nutritionist the therapist recommended thought I had quite a few gluten intolerance symptoms. I told him that I had already been tested for celiac disease because my old gastroenterologist also thought I had celiac symptoms. In the absence of a positive celiac disease blood test, my gastroenterologist had diagnosed me with IBS.

The nutritionist was still convinced that I had a gluten sensitivity because of all my symptoms, so he suggested I go on a gluten-free diet. He said I could also get a genetic test done if I wanted, though he was pretty convinced it would come back positive for gluten sensitivity. After my epilepsy experience, I'm not inclined to believe what so-called experts tell me just because it seems to make sense. I decided to get the test.

I had the test done, and it took about three weeks to get the results. According to the results, I carry a duplicate set of genes that predispose me to gluten sensitivity. The company emphasizes that carrying a gluten sensitivity gene does not mean that a person will definitely develop gluten sensitivity or celiac; however, it does mean the person has tendencies toward those conditions.

The test was relatively inexpensive for a genetic test ($149 plus shipping, as of Feb 2011). The reason the company is able to provide lower costs is because they cut out the middleman. Patients order the test directly from the company (no doctor's orders needed), collect the genetic material (cheek swabs or stool collection) themselves, and mail it back to the company. They also do not accept insurance; however, they do provide a form that patients can submit to insurance companies. I submitted a claim to my insurance company, and they counted the payment toward my out-of-network deductible.

To be honest, I still hold a little bit of skepticism because this company's techniques are questioned by some "experts" in conventional medicine. Yet, if I'd listened to all the conventional medicine "experts" I've seen over the years, I might still be bedridden from my ME/CFS as I was eight years ago. I credit a combination of conventional medicine, alternative medicine, and thinking outside the box with getting me to where I am today -- a fairly high functioning person with ME/CFS. I digress.

The nutritionist also said that going on a gluten-free diet helps a lot of people feel better even if they are not technically gluten-intolerant or gluten-sensitive. I actually started on my gluten-free diet before getting my test results, so it has been a few weeks. I figured I had nothing to lose. If I felt better, it really didn't matter what the results said. If there was no change in how I felt, I could go back to my gluten ways.

I am not yet 100% gluten free, but I have cut out cereal, bread, crackers, pasta, and anything else that is an obvious offender. I have not yet cut out foods with hidden gluten (e.g., certain sauces, dressings, and soups), but that will be my next step. Since I am making a life-long change, I am doing it in phases so that I can be as compliant as possible.

I must admit that I seem to be feeling somewhat better, though I'm told it can takes months of being 100% gluten free before a person notices any major results. As an added bonus, cutting the heavy-hitter gluten products (a.k.a. big-time carbs) in addition to sugars has helped me to lose a total of 10 pounds in about five weeks with diet alone (i.e., no exercise).

Based on my symptoms, the nutritionist also thinks I have a milk protein intolerance -- more specifically a casein intolerance. I have stopped drinking milk (I would occasionally add milk to cereal or oatmeal even though I am lactose intolerant!), eating yogurt, and having cheese as a snack. I am not casein free yet because I still eat creamy dressings and other products with milk-proteins, but cutting out the biggest offenders seems to be helping. At some point, I plan to get tested for casein intolerance. I'm the kind of person that needs multiple sources of evidence before I buy into something.

As I mentioned before, I am making changes to my diet in phases so that I have time to adjust before the next big elimination. Wish me luck!

Oh, if you're wondering what company I used, it was EnteroLab. I have no connection to this lab, so I don't know if they ship internationally.

P.S. I just found this online discussion about EnteroLab and the validity of their results. It convinced me even more to keep up my gluten-free endeavor.