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Gluten Free Me?

Many apologies, but today’s post will be short ( never mind- it seems it is impossible for me to write less than 1000 words per post, despite the constant feeling of an ice pick being stabbed into my right ear, which sets off a migraine, making it hard to read the screen. I apologize ahead of time for any mistakes!)

I do not want to miss a day of blogging, since I signed up with BlogHer’s NaBloPoMo this month. It has been a challenge, but also an incredibly awesome experience, to have a deadline – midnight of each day in order to write a post. I have set too many goals that I do not complete- almost always due to my health problems. This time, hard as it is, I am doing my best to write despite the pain, through the pain. Some of my posts are not incredible, heck, maybe none of them are. What matters most to me is that I create something each day; I promise I have made to myself many times, and failed. I hope to make natural products each day for my home, family and for gifts. I hope to become certified as a herbalist and aromatherapy practitioner. I will cook one wholesome snack each day, so that when the family or I are hungry, we reach for healthy cookies, crackers or muffins sweetened with a bit of honey or dates, instead of eating products that are so processed they can no longer be identified as food. I am disappointed in myself for failing to complete these goals. I try to remind myself there will be time to accomplish these things and more once I am well and mostly pain-free. It’s hard not to feel like a failure, however, when you keep failing, despite the circumstances or reasons.

Unfortunately my pain from nerve damage, which has increased since a failed brain surgery a year and a half ago has gone from a level 10 most days to a pretty steady 15 each day, off the charts with the faces in doctor’s offices. You know the ones with a smiley face for 0 or 1, to a sad, in some cases crying face for 10. I often wonder if I should try to draw up a face for pain at 15- pain worse than the labor and birth of both of my children combined. Whenever I am asked to point to the face that best represents how I am feeling now, my finger goes to the center of a cabinet or wall, approximately 5 faces from 10. The smileys and sad faces need an update, just as the DSM-5, the book which contains most every psychological disorder or mental illness any person could possible have is updated annually. I think the faces should be as well.

Onto a different subject, somewhat related. When I went to a farmer’s market in town last weekend I had the chance to ask two herbalists their advice on the best herbs for myself and my youngest, to help insomnia, anxiety (just me) and nightmares and night terrors. Both herbalists had different products to offer, however I was rather surprised that both people said that such symptoms could be the result of gluten intolerance or allergy. I have read some about this, since the subject is central to many blogs I follow, but I was surprised that this could be (possibly) what was causing some of our problems. I am much more knowledgeable about lactose intolerance, since this is something my husband and I have had for most of our adult lives, along with our little ones.

Today I ran a Google search, reminding myself to be fair but also skeptical- especially of anyone selling a product related to gluten Intolerance or who have the basic laundry list of symptoms I always find when doing an ill-advised self diagnosis at home. If you are sick, have a disorder, disease or disability, read the many sites that pop up when you run search words on your condition with a wary eye. I have too often believed what was on the screen, only to find the same symptoms listed for many other issues. It’s not that I do not think they’re true- there are many conditions that present as flu-like symptoms, weight gain, insomnia, but that if you do end up with mostly horrible doctors as I have, do a lot of research. It’s very important because the health “care” system is so corroded that often your best bet at receiving correct care is to make yourself an expert in whatever health problems or serious disease you may have.

The first (and only) site I came across today (I have had a 3-week long sinus infection, so sleep wins over doing research online. The site I read was from the doctor and author Dr. Mark Hyman MD. The top statements on his website read, “Gluten is a protein found in wheat, barley, rye, spelt, kamut, and oats. It is hidden in pizza, pasta, bread, wraps, rolls, and most processed foods.

Clearly, gluten is a staple of the American diet.Unfortunately, it’s also linked to many diseases and conditions; a review paper in The New England Journal of Medicine listed 55 “diseases” that can be caused by eating gluten. These include osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases.

Gluten is also linked to many psychiatric and neurological diseases, including anxiety, depression, schizophrenia, dementia, migraines, epilepsy, and neuropathy (nerve damage). It has also been linked to autism.

You can read more at his website:http://drhyman.com/blog/2010/05/12/how-do-i-know-if-im-gluten-intolerant/#close (I am not endorsed by Dr. Mark Hyman.)

What raised a big red flag to me was the neuropathy. This is the disorder I have been fighting for 3 1/2 years now. I have had 3 failed surgeries, enough nerve blocks to qualify me as a human pincushion in a circus sideshow and have been prescribed so many medications with little to no oversight, that my liver was toxic the last time my short-lived primary care physician thought to run a blood test. To be specific I was diagnosed as having Geniculate Neuralgia, however after a screwed up surgery for this, and the subsequent crowdfunding fundraiser plus incredibly generous help from my family and a dear friend, I traveled to Pittsburgh to see one of the top neurosurgeons in the country for this type of neuralgia. In the 5 minutes he had allotted for me he said, without question that he thought my diagnosis was wrong.

So tonight, as I reach bedtime I find myself wondering if perhaps I am not only lactose but also gluten intolerant (along with the rest of my family) as well. Thankfully I have a visit with a new physician tomorrow. I hope after going over my exhaustive, exhausting medical history she may agree to complete a gluten allergy or intolerance blood work. This would be much cheaper than undergoing an elimination diet when both my husband and I are in such constant pain from each of our disabilities and disorders. Without my husband’s drive to continue to work (and in this case cook) despite how much he hurts, my family would still be waiting three hours each night for me to get dinner made.

Do any of you have gluten intolerance or a gluten allergy? If so, how did you find out? Did you have any of the symptoms listed above, or different symptoms? I’d love to hear from you!

Also, I want to note again- I love when readers reply to my posts! I am sincerely sorry I have not been well enough to write back. My days have been much more painful as of late, and by the time I finish a blog post I go promptly to sleep. My days are spent trying to address have-to-dos on my to-list, without much luck. I am so grateful to those of you who have commented and written. I will get back to you- I’m just in tortoise mode right now. Thanks and be well!



One comment on “Gluten Free Me?

  1. Yes, gluten has caused me many days of an upset stomach. I’ve found that eliminating both gluten and diet coke has helped me feel better overall while losing weight as well, an added plus. Switching to more protein, fruits and vegetables has had a more positive effect on me.

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