Wednesday, March 16, 2011

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.


Sue Jackson said...

Hi, Alyson -

I am really out of touch - I hadn't realized you'd returned to regular blogging - nice to see you back in the blogosphere!

I am very interested to hear how your gluten-free experiment goes. I am lactose-intolerant (and have wondered about casein) - eliminating milk products improved my GI symptoms years ago. I use soy milk on my cereal and oatmeal.

I haven't tried gluten-free because it sounds so difficult!! Especially with kids in the house and a whole family to cook for.

Can't wait to hear how you fare.


Jo said...

I agree with Sue, it's good to have you back. I've managed to eliminate sugar now for two or three days and so far so good. Interesting about the lactose intolerance. It was one of the first things I noticed when my CFS went nova. I do eat cheese but I guess I'm going to have to address that if I want to tackle the acid reflux. Groan.

Good for you! Keep up the good work :-)

alyson said...

Hi Sue and Jo! Thanks for the comments. Being back online in a more meaningful way makes me feel like I'm reconnecting with old friends.

Since I'm going gluten-free in phases, it hasn't been that bad. I've been replacing my gluten carbohydrates with an increased amount of veggies. If I'm craving a true carb experience, I'll eat other types of carbs such as corn, rice, or potato. Since I'm also having to worry about my glucose levels, I make sure to eat protein and healty fats (like olive oil, avocado, or almonds) along with my carbs.

It's amazing how many gluten-free products are available now. You can find gluten-free bread, cereal, cookies, crackers, etc. I've tried to avoid purchasing processed foods because they are just so expensive. However, if you are having a particular craving, they're great.

Congratultaions, Jo!!! Three days and counting. I didn't realize how much sugar I consumed until I cut it from my diet. Make sure that you take calcium supplements if you cut milk products altogether. Keep up the good work!

Nicky Reiss said...

Hi Alyson,

Good to see you back; you've had one heck of a bad year.
I've also been getting more testing recently and have just written about it on my blog. If you can, I'd recommend getting tested for fructose and lactose malabsorption using the hydrogen breath test. It was a real eye-opener (and it made a lot of sense) once I realized my body wasn't processing fructose.
My extreme diet (even more extreme than yours!) is working really well for me.
All the best

alyson said...

Hi Nicky,

Thanks for stopping by. I read some of your recent posts about your new extreme diet. Wow! You weren't kidding about it being super extreme. It's amazing how much you've improved!

I already know that I am lactose intolerant (which is easily avoidable now that I've cut out all casein/milk products). I had not heard of fructose malabsorbtion, but I will look into that.

I've been holding off any additional testing due to finances, but it is definitely in my future. I've been looking into something called ALCAT Testing (, which is ridiculously expensive but may be worthwhile for me.

Good luck with your diet!