Month: April 2012

Six years ago today my niece died from epilepsy. She was 14 years old. Based on the path of her illness I don’t think she died of undiagnosed celiac disease. From what I have read, Celiac induced epilepsy tends to follow a different pattern. But today I was reading a 20 year old book on juicing and even there they noted the link between epilepsy and food sensitivities. It made me want to scream. Losing her was horrible. Thinking about it makes my stomach and chest ache. Thinking that somewhere out there another family with a gluten induced form of epilepsy is losing a child because the doctor did not test for food sensitivities makes me so angry that the thesaurus fails me. I hold nothing against the doctors who misdiagnosed me in the 1980s. Nobody knew about celiac disease then. But now, with gluten-free food showing up at every grocery store, and doctors in Iran (Iran!) recommending that every child with epilepsy be tested, failure to test every child with epilepsy, Down’s Syndrome, Type 1 diabetes, and autism is unconscionable. Yet it happens every day and given that epilepsy is so common and so dangerous the odds say that somewhere tonight some other parent is getting the bad news. And this time, maybe there was something that could have been done. This must stop. If your doctor tells...

One of the things we have tried to impress upon our son is that while being unable to eat certain foods is inconvenient it really is not that limiting. He can eat what he wants to eat, we just need to plan ahead. We also try to remind him of all the other children with similar issues. We want him to know that he is not alone and it is helpful that he is not the only child in his school with the same issue. At the Gluten-Free Expo we met Stasie John, author of a new book called “The Gluten Glitch” which is all about a little boy who, like my son, sometimes misses out on things because there is something that happens last minute and we can’t do a safe swap. We bought her book and my son loves it. My husband has been reading it to him over and over and over. We even had our first ever taco night since the boy in the book has a taco night. So if you want to pick up a copy for a child you love who can’t eat gluten, here is a link to Amazon. The book is also available in the UK from Amazon. http://www.amazon.com/The-Gluten-Glitch-Stasie-John/dp/1592984673 And here is the link to Stasie’s website...

If you have read any of my other posts you can probably guess that junk science is a pet peeve of mine. I used to have a sign in my office that read “You are entitled to your own opinions. You are not entitled to your own facts.” And here is one to think about. At least here in the United States, neither all-natural nor gluten-free have the kind of clear, legally enforceable, meanings that a lot of people think that they have. Don’t believe me? Allow me to refer you to the FDA website where they outline the squishy nature of the term “all natural”. http://www.fda.gov/AboutFDA/Transparency/Basics/ucm214868.htm There are good standards by which to evaluate your food. USDA Organic is one example. Many lawyers and advocates debated it for a long time and whether you like the definition or not, it is a clearly defined term with a logo that means something. Non-GMO certified means something as well. It means that a private group has certified that the manufacturer follows a specific process to test for GMOs and that the product has less than 0.9% GMO ingredients. The GF in a circle logo means that the food is tested regularly to ensure that it does not contain gluten in excess of 10 ppm. You can check this yourself here… http://www.gluten.net/gfco/how-to-certify.aspx But for gluten-free, the FDA has not yet ruled...

I have a friend whose Crohn’s disease went into full remission after a year of eating gluten-free. This made me interested in all the research around Crohn’s, gluten, and food intolerances. Crohn’s disease is associated with western diets. I have several citations below. The bottom line is that if you or someone you love has Crohn’s it would be reasonable to try to identify any food intolerances (IgA reactions) and allergies (IgE). There are tests for gluten and dairy, but given the potential for the culprit to be corn or citrus, I would want to work with a nutritionist on managing an elimination diet with reintroduction. Remove as many potential problem foods as possible at the same time (for a Crohn’s patient it appears that additives and preservatives, grains, dairy, eggs and citrus are most common) and eat this limited diet for a month, then reintroduce the potentially offending foods one at a time. Crohn’s patients may have atypical sensitivities as well (certain fruits and veggies) which can also trigger episodes. It seems that vitamin D may be part of the issue. If you get yours tested, you want to see a level between 50 and 90 nanomoles per milliliter. Fish oil has also shown some promise, and you should be certain that you are getting enough nutrients overall. So now on to the research This first full article...

One of the biggest challenges in discussing gluten intolerance is the fact that the most common symptoms are not something you would ever discuss at a party, or over dinner, or really at any time with anyone unless you are a medical professional. People will discuss lots of things but bowel habits is not something that comes up often. And neither are severe menstrual cramps. Which may be why I did not realize that yet another medical issue that caused many doctor visits in my youth was also due to eating the wrong breakfast cereal. It is not possible to discuss this symptom without it being kind of disgusting so if you have never had the sort of cramps that leave you screaming that ibuprofen is useless and you need morphine…then skip this post. But if, like me, you have actually needed to be put on the pill or given prescription narcotics to get through that time of the month, read on. Apparently problems with menstruation are a common symptom of celiac disease. If your doctor is hesitant to have you tested based entirely on a history of really bad cramps you can show her the following. http://www.ncbi.nlm.nih.gov/pubmed/11975966 or this entire document http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928757/ which also notes that these menstrual symptoms seem to start PRIOR to the beginning of gastrointestinal symptoms. or this one http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046043/?tool=pubmed There is emerging / preliminary...

One of my all time favorite movies is The Matrix. In The Matrix, the protagonist Neo has to choose whether or not to actually know what is going on. He has to choose either the red pill which will tell him the truth, or the blue pill which will allow him to continue to believe whatever he wants to believe. He chooses the red pill, which leads to a series of scary and unpleasant truths about his life. Things he can never again choose to not know or understand. Ultimately it also leads to an amazing new sense of freedom and power. But that middle part is ugly. People need to choose the red pill in their own time. Yes I get frustrated by people who have so many symptoms they could be photographed for a medical textbook yet insist that nothing is wrong. But I also know that the hardest decision is not the one to eat gluten-free. The hardest decision is to choose to know the truth and find out just how far down the rabbit hole actually goes. That said, if you want to help people with choosing to know here is the study that made my blood run cold and made me want to punch every doctor who had seen me over the years but never considered this possibility. This is the often cited Warren...

I am not a stockpiler. After all, I eat gluten and dairy free and at least half of what I eat is purchased in an unprocessed state (raw fish, eggs, meat, veggies, fruit) so I didn’t see the benefit. Then I met Melissa at the Nourished Blogger Conference. Melissa is half of Stockpiling Moms and she has celiac disease. She is a celiac feeding her family on some insanely small amount of money (I want to say that its $130 a month, but it might be $130 a week) so she does gluten-free stockpiling. So if you enjoy stockpiling deals and are looking for a little help saving money while going gluten-free, you may want to try her gluten-free facebook page (she does giveaways and has special deals there) or her website. If you are a Groupon fan, there is another site to be aware of called Gluten Free Saver. It has one deal per week. Some of the recent deals look pretty good. It looks like you can save about half off retail on the deal of the week. I actually like the idea that it isn’t a daily deal. I need time to think. I just signed up today so I will see how in love I am with them in a month. Melissa’s site is http://www.stockpilingmoms.com and the Gluten Free Saver is at...