My Gluten Free Story (also great resources links)

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I had posted this on our cooking blog, www.serendipitykitchens.blogspot.com but thought I would also share it here for the sake of updates on our lives. It's lengthy - there was no route around that. 

This is an excellent article my broher, Ben shared with me regarding Celiacs Disease. Very simple and straight forward read (symptoms, diagnosis and info). Kind of cool to have a ".gov" resource like this. Meaning it is acknowledged "officially".

Hypothyroidism and Rheumatoid Arthritis are just a couple of SYMPTOMS of a gluten (and other food) intolerance. instead of bulking up on drugs, why not look at your diet. I'm determined to do this. Currently looking for a Dr and/or naturopathic physician to give me the test - I don't want just anyone though. You should be selective of the dr. doing the test.

Why am I posting this? I guess I would start here...

My Personal Story on my "Medical Journey", as short as I can explain it... which probably won't be very short. I have been going to a specialist for about 4 months now for chronic pain in various parts of my body. With what initially started out as a self-diagnosis of Plantar Facetious turned into a beast of a medial journey. 

The plantar facetious (to which I will refer to as PL now) idea originally stemmed from the fact that I had just finished the 2009 Portland Marathon. My first marathon (completed in 4:29 so not bad!). I did about 4-6 months of training and extensive running for this. Problems in my feet started earlier in the year but I chalked it up to running too hard in the beginning. The funny thing was that my feet did not hurt while running (which with PL is supposed to be excruciating to run with). Also, my pain was generally in the frontal area in the ball of my foot centralized around my pinky toe-joint; PL is most commonly located in the heel and arch. My foot (started in my left) hurt excruciatingly to walk around the house but would ease up after a few hours and then only hurt minimally. I would wear my crocks everywhere which sort of helped. Putting weight on my feet in the morning was the worst. I looked like I was walking around on glass or nails (and it felt like it I guess in those areas). I will attest to having a a high pain tolerance, I'm not bragging, I just do and I know it. I think I have tended to just get used to being pretty miserable (body aches) over the past 10 years and just deal with it. I never really thought something might be wrong with me.

So back to the medical journey. I would like to mention that I think I am a very lucky person and that I have a lot of resources already that are getting me through my "mystery medical journey" a lot faster than most people would have. I believe if I did not have any of the resources I have to help me out, they would either stay miserable and/or be stuck on drugs their entire life. 

My resources pertain to my most basic family food allergies and medical conditions from my mom and brother and sister - not even mentioning recent things with extended family members from my mom's tree. We all seem to have similar issues of some combination with food allergies. 

Before I get into the food allergies, I'm going to mention my journey from where I left off after the Portland Marathon because it might be important to someone, someday also trying to figure out their problems. 

This entire year, 2009, I had started having a lot of on and off issues in my hands, wrists, forearms, shoulders. I chalked it up to doing a lot of computer work (I am a graphic designer / web developer www.mollybean.com)over the years, thinking I was getting carpal tunnel or something. Afraid any doctor I went to would tell me I needed surgery, I avoided actually going in. I am very mistrusting and afraid I'll get the wrong doctor. Then one morning I woke up with the inability to use my right arm. The wrist and forearm hurt excruciatingly - so bad I was in tears. I couldn't lift my son, couldn't lift my own arm because the weight of it moving hurt so bad! My regular doctor could not get me in until 3 days. Umm... lame. It started going away the next day and gradually left. I cancelled the appointment because it was gone by the time I was going to go in which seemed stupid to try to diagnose anything when it wasn't at it's worst. So months go by. Every now and then during the year my hands and wrist would get achey and inflamed but never as bad as that one time. In the meantime the feet thing just became used to, just something that happened daily. 

After the marathon my body started quickly breaking down. Everything just started going downhill fast. The "L" of my hands (see picture) on both sides swelled up, the joints hurt so bad to move (typing and clicking mouse = OUCH). I decided to take a couple months off, which turned into 4 1/2. It hasn't helped much - in fact, my right foot pain started AFTER I stopped running. 

Initially, when I decided I wanted to do SOMETHING about it, someone on twitter mentioned a process called, ART (Active Release Techniques) which is pretty popular at Ironman races and Triathlons. So I looked someone up close by. The options were Mt. Shasta (1 1/2 hrs away) or Eugene (3 hrs away). I met with Janet Biondi in Shasta a couple of times. I convinced myself it was doing something, it wasn't. I stopped going more for weather and it wasn't covered by insurance. Costs were $60/hr. A procedure basically billed for 1 hr each time. Plus my gas and time off work to go there. So I made an appointment with a specialist.

I am currently with Ventana Wellness, seeing Dr. Karl Osborne. I like his overall method of solving the problem. His personality on the other hand has to grow on you. 

Original diagnosis of my overall pain factor was that I am borderline Hypermobile. Which means you are more flexible than the average bear and that my running a lot resulted in an overuse of my joints combined with high arches and a sway-back and that I should get $500 orthotics made for my shoes (basically a custom mold arch and foot support). I wanted to let this sink in before schilling out the dough and we supplemented with over-the-counter orthotic flip-flops which initially have helped ease the pain from excruciating to just medium most days, but it is definitely still there and I don't believe a custom orthotic would solve the problem fully.

Going down the story-line a bit further - Dr. O is known a procedure called Prolotherapy. It's a sugar-water injection into the joint. Read the link. At the time I was having insane headaches almost every week. I did not describe them as a Migraine specifically because I always believed migraines made the person sick to their stomach and I just felt like my head was going to combust. I was mostly functional except for one time that just broke the camels back. It felt like some claws were gripping the base of my neck and wrapping their fingers around the back of my skull. I orginally had an appointment to try the prolotherapy on my hands they hurt so bad,b ut after that weekend I changed my session to my neck and shoulders. This can take up to 4-5 procedures to get a result by the way. The photo looks gruesome but believe me, it didn't hurt that bad. Felt like I had strained some muscles for a couple days, that's it. Without going into Prolotherapy too much, overall, I did this twice so far and just cancelled my next one - why - because I stopped having the headaches. My neck and mainly shoulders still hurt a bit but so does my entire body and I don't want to think I need prolotherapy on every single joint in my body. A red flag that that is not the answer - although - I don't have any headaches so I will say that it might have helped in some way.

In the meantime, Dr. O started in on some blood tests to figure out if I had any Arthritis and/or Autoimmune Disorders. His main ones were Lupus and Fibromyalgia which have both been ruled out. Labs screwed up my tests initially so it's taken like 2 months between appointments and blood draws to get an answer. I see another doctor in the office for regular girl stuff and (side not, found out I was 2x negative on vitamin D - another story) Dr. O had piggy-backed my Rheumatoid test on her blood work so I accidentally found out before meeting with him that I basically have Rheumatoid Arthritis. This sucks! But it's an answer to everything and will actually make everything better I hope! I'm over the hump of not knowing.

From here, I talked to my mom, who is self-diagnosed gluten and corn intolerant (the short story on her). I want to say that I have been trying to, but not too seriously, be gluten free to see if I feel any different (even before all these issues). I'm always tired and feel prettymuch crappy without my added current conditions. 

My mom found this article about arthritis and gluten and food allergies related to Rheumatoid on Celiac.com. An excellent website for information, by the way. Reading this article, ben's article (top of post) and the Rheumatoid Arthritis article I am now fully convinced that I have a gluten intolerance. Good to mention here - if you read the article on Celiac.com about the arthritis, I am also allergic to milk (a milk protein, Casein - found in most animal milk). This sort of nails it on the head according to that article. The .gov article that Ben shared under "...health problems that people with celiac diseas have" says directly:

What other health problems do people with celiac disease have?

People with celiac disease tend to have other diseases in which the immune system attacks the body’s healthy cells and tissues. The connection between celiac disease and these diseases may be genetic. They include

• type 1 diabetes
• autoimmune thyroid disease
• autoimmune liver disease
• rheumatoid arthritis
• Addison’s disease, a condition in which the glands that produce critical hormones are damaged
• Sjögren’s syndrome, a condition in which the glands that produce tears and saliva are destroyed

And also, my theory that my entire family and extended relatives coming from my mom's branch of the tree... this part of the .gov article states:

How common is celiac disease?

Celiac disease affects people in all parts of the world. Originally thought to be a rare childhood syndrome, celiac disease is now known to be a common genetic disorder. More than 2 million people in the United States have the disease, or about 1 in 133 people.¹ Among people who have a first-degree relative—a parent, sibling, or child—diagnosed with celiac disease, as many as 1 in 22 people may have the disease.²

I meet with Dr. O again in a couple of weeks to go over the Rheumatoid test results. I am glad I asked my regular doctor what the result was and got a snippet because I have found out so much in the week since then - everything is starting to make sense. She said that there are other tests that she would have done in order to get a more clear answer (not sure what that means, I'll find out) - but said I should just discuss with Dr. O since he originally ordered the test.

Why are celiac disease symptoms so varied?

Researchers are studying the reasons celiac disease affects people differently. The length of time a person was breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear.

Interesting - most of my siblings and I were only breastfed for a couple months if that.

Symptoms also vary depending on a person’s age and the degree of damage to the small intestine. Many adults have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications.

I am even more convinced though from reading the Rheumatoid Arthritis article from health.google.com:

Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.

Symptoms

The disease usually begins gradually with:

• Fatigue
• Loss of appetite
• Morning stiffness (lasting more than 1 hour)
• Widespread muscle aches
• Weakness

Eventually, joint pain appears. When the joint is not used for a while, it can become warm, tender, and stiff. When the lining of the joint becomes inflamed, it gives off more fluid and the joint becomes swollen. Joint pain is often felt on both sides of the body, and may affect the fingers, wrists, elbows, shoulders, hips, knees, ankles, toes, and neck.

Additional symptoms include:

• Anemia due to failure of the bone marrow to produce enough new red blood cells
• Eye burning, itching, and discharge
• Hand and feet deformities
• Limited range of motion
• Low-grade fever
• Lung inflammation (pleurisy)
• Nodules under the skin (usually a sign of more severe disease)
• Numbness or tingling
• Paleness
• Skin redness or inflammation
• Swollen glands

Joint destruction may occur within 1-2 years after the appearance of the disease.

The highlighted are my symptoms for the most part. It is crazy to me how it happens equally on both sides of the body. The scary thing is that it can actually break down your joints if not taken care of under a year. 

RA usually affects joints on both sides of the body equally. Wrists, fingers, knees, feet, and ankles are the most commonly affected. The course and the severity of the illness can vary considerably. Infection, genes, and hormones may contribute to the disease.

The last bit of this story is that I have gained at least 12lbs in the last 4-5 months. That's in incredible amount of weight gain for a person that generally eats healthy. A lot of people toss the fact aside and say,"well muscle weighs more than fat - you probably just got muscly" - I know I got stronger, but nothing changed about my body with it's physical appearance. Really, think about it. A person would have to lose at least a pound, running that much?!  On top of the fact that I did not lose one single pound while training and running the Portland Marathon - I had an original 10 lbs left over from having my son in 2008 that I just couldn't get to go away. So now I am 25 pounds overweight. Another note, think about this one, for my weight and height at the time fo the race, I supposedly burned 3,500 calories that day. A marathon is 26.2 miles. And .2 IS HARD after running 26 miles, so don't forget that! Anyway, I ate a horrible breakfast that morning, basically went on an empty stomach. I didn't nutrition well at all during the race. A banana and some water and sports drink (I will change this for the next one).... and had a big burger, fries and some candy - I weighed myself that night, I did not lose one pound. That's just insane to me. 

So this was not short by any means, but I hope by publishing it online, it may one day give someone else some resources to go by. 

Our blog is dedicated to creativity in the kitchen. My mom and I mostly post about gluten free, corn free, milk free and other stuff. Occasionally we publish non-allergy-free items because let's face it, we have other family members who are not affected and sometimes making the original recipe is where you start to make it an allergy free one. My sister has hypothyroidism - a symptom of Celiac Disease or some level of a gluten intolerance. She is categorized under a lot of the symptoms of Celiacs. Hopefully she will join the ranks and go gluten free 100%. The world is fast catching on that a LOT of people are wanting to be Gluten Free. I think it's wonderful.

My last note is that I am now headed to finding a good local naturopathic physician to do a celiacs test. I am interested in the outcome.... either way, all things point to the necessity to go Gluten Free.