Patient Power

No one has the time or will to solve the mystery for you, especially when you have “non-life threatening” chronic issues that can have many different causes.

Doctors are very well suited to treat common illnesses and save your life in acute situations, but sometimes, you can’t beat the patient’s or their loved ones’, usually parents, drive to figure out what is really going on. These could be cases where the illness is rare, or even if it fairly common, still not fully understood.

Recently came across the story of Doug Lindsay, who despite being bedridden for 22 hours a day for 11 years, found a cure for himself, first through old textbooks then reaching out to researchers and a surgeon with his findings.

Also revisited the movie Lorenzo’s Oil, based on the true story of Lorenzo’s parents’ race against time to find a cure for their boy, and learned of this interesting tidbit.

At the time the movie was released, scientific studies had demonstrated that Lorenzo’s Oil did not work for other ALD patients who, like Lorenzo, had already developed symptoms of the disease. Lorenzo’s reaction to the Oil was an anomaly. (We are not aware of any explanation for why the Oil worked with Lorenzo.) The worries of the scientists and ALD Foundation leaders about holding out false hope to families (concerns that were ridiculed in the movie) turned out to be entirely justified. Then, in a twist of fate, scientific studies completed ten years after the film was made found Lorenzo’s Oil to be effective in preventing ALD in a different group of people, boys with the ALD genetic defect who did not yet have neurological symptoms. Ironically, these studies were performed by Dr. Hugo Moser. In the movie, the character modeled on Dr. Moser, Dr. Nikolais, is portrayed as the epitome of the unresponsive medical establishment.

The study mentioned above (Moser HW et al., Follow-up of 89 asymptomatic patients with adrenoleukodystrophy treated with Lorenzo’s oil) showed an approximately 2-fold reduction in the risk of developing MRI abnormalities.

Thoughts on Gluten Cross Reactive Foods

After coming across many blogs talking about “19 gluten cross reactive foods” I was first concerned and worried, then overwhelmed by the sheer number of foods that may be problematic.

Then I found another busting the “myth” (Christina Graves), doing a better job of it than I ever could, and clearing up the confusion. This also prompted me to finally read at least the abstract and conclusion of the original study (Aristo Vojdani, Igal Tarash Cross-Reaction between Gliadin and Different Food and Tissue Antigens, Food and Nutrition Sciences, Vol.4 No.1, January 2013). The 19 foods were the initial suspects, so to speak, but among them only milk, corn, rice, and also millet and yeast (but these possibly due to cross contamination) were found to possibly cause issues. Also the study was done for cross reactivity with α-gliadin, relevant for celiac disease.

Had I gone to the source from the beginning, I would have known that this probably doesn’t apply to me to begin with. As far as I know I am not celiac. I am most likely reacting to ω-gliadin (based on the fact that my symptoms are exacerbated by exercise), another component of gluten. And those are not the only two parts that make up the structure of gluten! NCGS (non-celiac gluten sensitivity) might involve other parts.

Along with gluten, I too have problems with milk (confirmed allergy) and fresh yeast. Does it mean anything that it partially matches the study’s results?
Among the 19 suspects, I have problems with quinoa, buckwheat (confirmed allergy), and amaranth.
But are these cross reactions to gluten? More likely they are separate problems of their own or cross reactions to my other allergies.

As I too started my food journey by going gluten free, it was all too easy to think that I was either being “glutened” or was having gluten cross reactions when I continued to have symptoms. At least for me, the answer turned out to be additional allergies and sensitivities apart from gluten. This is also mentioned in the original study’s conclusion.

“If after adherence to a strict gluten-free diet and the elimination of cross-reactive foods symptoms still persist, further investigation for other food intolerances should follow.”

Yet again, cross reactivity is a complicated issue, at the molecular level. While it can  indicates increased possibility, it may or may not apply to you. Depends on how your immune system identifies the “offenders” and how accurate it is. So, individual answers may all be different.

Following such lists can be misleading, inconvenient, possibly dangerous without first testing yourself.

Regarding testing, along with formal skin tests, blood tests, or even endoscopies, carefully done elimination diets, food challenges, and possibly data tracking and molecular structure simulations might help find answers.