Gluten & Fibro Free

This past fall, I finally had to leave my job due to my illness. I tried very hard to manage my illness by making dietary and other health changes, so that I could continue working as long as possible. I absolutely loved my job as a school librarian and it was a tough decision for me to leave behind a career that I felt very called to do. My primary care physician had been suggesting the possibility of me applying for disability for well over a year. He isn’t the type to issue a stop work order and wanted me to come to terms of the seriousness of my illness on my own. So being that I am extremely determined, and well lets just say stubborn, I continued to push myself harder than I should. And I got very sick. Basically it came down to a point where I was so sick that I didn’t even have the option to continue what I was doing.

I have been embarrassed about my situation and honestly haven’t been very open with family and friends. So, I didn’t feel like sharing what I have been going through with strangers on the Internet. There is a social stigma that comes along with being disabled and I have not been very comfortable with the association. Some people think that Social Security Disability is a welfare system for people that are too lazy to work. That is simply not the truth. Social Security Disability is public assistance for people who are unable to work and it is a program that I have paid into while being employed. While I feel that I am entitled to receive benefits, it is a tough battle to fight. I know that there are always people that try to take advantage of the system, and this has made it harder for people that are actually justified in receiving benefits to get the benefits that they need. I hear stories everyday about people that cannot walk being denied benefits. I also hear about people getting their first check after they have already died.

Fibromyalgia is an illness that is diagnosed by process of elimination, as well as the symptoms the patient has. Pain is all subjective and there is no blood test that will tell my doctor how sick I am. I have a medical history that is a foot high when it is printed out, but I have been denied not only Social Security Disability benefits, but also benefits from a Long Term Disability policy I had paid into for several years. This of course increases my stress and anxiety, making my condition more difficult to manage. I have had to hire a lawyer to represent my case, but I am told it could take up to two years to receive any benefits.

What seemed to be  missing from my case was some sort of blood work that was abnormal. Of course I have had a few things like high cholesterol and high insulin, but those aren’t considered debilitating. I may report pain to my doctors and they note it in my chart, but there is no test that shows how bad I hurt. Just my words….until two days ago.

Two days ago I was contacted by a clinic that had run a blood test for me. I went to see a new doctor after posting a message in an online chronic pain discussion group. An individual contacted me and said that they thought I should get tested for Lyme Disease. I am familiar with Lyme Disease because my mother has suffered for many years with the illness. When I first became sick, I requested that my doctor test me for Lyme. All my symptoms mimicked what my mother had, so I thought that I might have it too. More than five years ago when I became symptomatic with what doctors thought was Fibromyalgia, my ELISA Lyme Disease blood test came back as negative. So I just brushed the idea aside that I might have Lyme Disease and trusted that my doctors would find what was wrong with me. The ELISA Lyme test has been notoriously bad at actually giving doctors the ability to diagnose Lyme Disease. I mistakenly thought however that testing would have improved in the 20+ years since my own mother was diagnosed. It turns out I made a bad assumption and my original ELISA Lyme test was a false negative. But two days ago my Western Blot test for Lyme Disease by IgeneX came back as being positive. I have Lyme Disease.

Hopefully this new diagnosis will help me find better treatment for my illness. I may even recover from all of my food sensitivities! I am also hopeful that this new diagnosis will help solidify my disability case. But who knows. Believe it or not, Lyme Disease is even more controversial than Fibromyalgia and Chronic Fatigue Syndrome. Lyme Disease is often misdiagnosed as Fibro/CFS. If you want to learn more about Lyme Disease and how you might get tested, please see the resources listed below.

American Lyme Disease Foundation
Find out general information about Lyme Disease

Fibromyalgia, Chronic Fatigue Syndrome, and Lyme Disease
by Bonnie Gorman, RN
Article hosted on the Canadian Lyme Disease Foundation (CanLyme)

Lyme Disease.org
Publishes Lyme Times

LymeNet
Proper diagnosis and treatment is essential. Find a Lyme literate doctor (LLMD) near you. Click on the “Flash Discussion” link on the left hand side. Find the discussion “Seeking a Doctor” to get a referral. Many doctors have lost their practice for treating this controversial disease, so patients are referred very discretely.

Under Our Skin
A documentary about Lyme Disease available via Netflix Streaming

Diary, Disability chronic fatigue, Fibro, Fibromyalgia, Lyme

Celebrating One Year Gluten-Free

On February 25, my family went out to Arni’s to celebrate my one year anniversary of when I went gluten-free. I’m sure that last year around this time I was probably thinking I would never eat pizza again, but just this past month one of my favorite restaurants started serving up a GFree Pizza that is actually pretty tasty. Frankly, I couldn’t think of a better way to celebrate this life-changing event!

When I cut gluten out of my diet last year, my health improved significantly. While it was a difficult diet to follow in the beginning, the rewards of doing so were practically immediate. Withing three days of adhering to a strict gluten-free diet, the inflammation in my body began to recede and I had more energy than I’d experienced within the past four years. I remember crying in front of the butter at the grocery store, wondering if the “natural flavor” in the generic butter meant it might contain gluten. The possibility of something as simple as butter containing gluten was overwhelming to me at the time. I quickly found it easier to avoid processed foods altogether, with food labels that require a chemistry degree to decipher, and stick to whole foods that I cooked at home. I think by doing this that I also eliminated many chemicals and preservatives that my body was reacting to as well.

At one point I noticed that I was getting nauseous eating baby carrots. My doctor didn’t think I was allergic to carrots, and he suggested I try eating organic carrots to see if I had the same reaction. I tried the organic carrots and was able to eat them just fine. So from then on I started buying organic products whenever they were available. This also has helped eliminate my exposure to toxic chemicals and has reduced some of my symptoms.

About two years ago, even before I cut out the gluten, I swore off Monosodium Glutamate (MSG) and artificial sweeteners. Doing this really helped alleviate some awful migraine headaches. So I must say that it isn’t just through avoiding gluten-full foods that I have reduced my Fibromyalgia symptoms, but it has been a process of eliminating my exposure to variety of triggers. However, I believe that going gluten-free has had the most significant impact on the overall improvement of my health thus far.

Going gluten-free has certainly improved my health over this past year. I have lost about 45 pounds without counting calories. I didn’t concern myself with counting calories or tracking fat intake because it was such a challenge just to make sure that I wasn’t ingesting gluten. I’m not sure my body knew what to do with all the chemicals in the processed foods. Possibly my liver couldn’t process things fast enough, so maybe it just manufactured fat and shoved the chemicals into the fat cells thinking it would get to that later. Also, a skin rash I’ve had on my arms since my early teen years has almost completely vanished. How interesting that the rash originally appeared around the same time I was diagnosed with Irritable Bowel Syndrome (IBS). I have fewer problems with my digestion now, although I still suffer from reflux. I cannot seem to stop taking the Protonix, a proton pump inhibitor, that I have been taking for over four years.

I am still having occasional flare-ups, and so I’m trying to figure out what some of my other triggers might possibly be. On my list of suspects are corn, soy, chocolate, cinnamon, nutmeg, and probably vinegar.  The last four are known to be  high in histamine or produce large amounts of histamine in the body. I have horrible reactions to cinnamon and nutmeg; my arms get stiff and heavy, with numbness and tingling in the mouth, accompanied by persistent coughing and fatigue. Chocolate seems to make my skin crawl, and I’ve always attributed this to the caffeine. Cinnamon and nutmeg are high in benzoates, and I know I have reacted to a salad dressing that has had sodium benzoate as a preservative.

I’ve been reading Dealing with Food Allergies by Janice Vickerstaff, and apparently it is possible to have an intolerance to benzoates. She also discusses the possibility of developing a histamine intolerance caused by a deficiency of two enzymes, diamin oxidase (DAO) and histamine methyltransferase (HMT). Histamine tolerance may also be reduced by autoimmune diseases and medications, such as antidepressants. Since histamine is responsible for triggering the immune response, it becomes difficult to distinguish between a reaction due to an allergy, or a reaction that has resulted from high levels of histamine in the system. Without the proper enzymes to break down histamine, it can build up in the body. One way to cope with reactions due to histamine toxicity is to modify your diet and eat foods that are naturally low in histamine, and foods that do not trigger a release of histamine to the body.  Dr. Vickerstaff recommends trying a histamine-restricted diet for a period of four weeks to see if it will alleviate symptoms.

Low Histamine Diet

I think that it is worth a shot to see if my remaining symptoms will subside. I’ve seen many fibromates talking about how they avoid the deadly nightshades. I think that it is interesting that these are also high in histamine and should be avoided on this diet. I’ll make sure to post if this also makes a difference.

Diary allergies, chronic fatigue, diet, Fibro, Fibromyalgia, Gluten-Free, histamine

Adrenal Dysfunction is listed as a possible cause of Fibromyalgia on the Environmental Illness Resource website in an article by Dr. Rodger Murphree. The adrenal glands tell the body when to release hormones that help us cope with stress. If your adrenals are not working properly, your body is unable to cope with stress and this could trigger a Fibromyalgia flare.¹

Special adrenal support supplements are available to help you restore proper adrenal function to your body. I’ve started taking one and it has made a world of difference. After starting the adrenal supplement, I’ve managed to work three full weeks without having to take a sick day due to a flare-up! It isn’t enough just to take the supplement though, you also need to learn how to better cope with stress. I’m currently reading a few books about coping with stress and I’ve also made an appointment for counseling. Maybe I can learn how to say no to people.

For more information read Dr. Rodger Murphree’s book, Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome. Dr. Murphree recommends various supplements and sells them on his website. You should consult with your doctor before using any supplements. The adrenal support that I am on is formulated by my doctor and sold at his office. I have not tried any of Dr. Murphee’s supplements, and therefore do not endorse them.

1. Causes and Treatment of Fibromyalgia. Environmental Illness Resource. [↩]

Research Adrenal Fatigue, CFS, chronic fatigue, Fibro flare, Fibromyalgia, FMS, stress

Well I had an appointment with my General Physician yesterday to discuss some allergies and my progress with my new diet. I felt really weak over the weekend, like I just didn’t have the strength to do anything. This is different from the sluggish chronic fatigue feeling I had when I was eating gluten-full foods. I took a gluten-free Iron supplement on Sunday and Monday, resulting in increased energy but constipation. So I dropped the Iron on Tuesday. I discussed possible anemia with my Doc and he said he would run some blood tests.

I did okay yesterday, but felt faint around 4 PM today. This was about fifteen minutes after I went through the shampoo and soap aisle at the local pharmacy, smelling all the wonderful products. I was trying to find a natural soap and some shampoo that was gluten free. The doctor suggested I might have a chemical sensitivity. My skin has been so itchy and dry over the past few years. It has gotten better since I’ve begun to eat organic foods that are gluten-free, but I thought the process might speed up if I found some cleansers that were more sensitive on my skin.

The regular pharmacy didn’t have much to choose from that was low in chemicals, plus gluten-free. I smelled everything, including some Aveeno products, which are a big no-no…I just couldn’t resist picking up the beautiful packages and double checking the ingredients. I decided on some Burt’s Bees Bar Soap, and went to stand in line. That was the point I started feeling faint. I started thinking that maybe I should have taken an Iron supplement today, since I skipped yesterday. When I was pregnant with Corbin (3 Years Ago) I was anemic and my doctor had me take Iron every other day.

After paying I went out to sit in my car, I started coughing and my stomach started cramping up horribly. Tonight I’m having stomach cramps and back pain from smelling soaps? I can’t possibly be that sensitive. Maybe I have a major case of denial, or maybe it is all in my head. I did eat some kettle chips about an hour before shopping without washing my hands first, but normally if it is a problem food I react within a few minutes. My family is threatening to put me in a bubble. Seriously, how am I suppose to cope with this? I just want to feel better. Is that too much to ask?

The doctor said to keep a food journal and note my reactions. Then I need to eliminate foods that are questionable, then add them back in and see how I react. He said allergy testing isn’t really accurate, that it is just good for double checking to see if you really need to avoid something that you don’t want give up forever. My husband said that I could have paid him the $15 copay….he has been telling me to keep a food/health journal for a long time. I think putting me in a bubble may be the way to go.

Diary allergy, chronic fatigue, Gluten, smell