I've been gluten free for a month now. I went off of it this weekend more because we went to a cookout after a very long day and I was starving. I haven't been diagnosed with anything, just trying it out for joint pain and POTS stuff. Anyway, I wasn't sure it was doing any good until I went off. I am in major pain and had GI issues pop up again. Going back on tomorrow and not coming off again. This sucks! 

Day Four of Gluten Free

So, I can tell you that I don't feel any different so far. To be fair, I'm not expecting to yet. I imagine it takes a while to lower your inflammation from eating gluten all these years. And just like medicine, it may take a while to take affect.

Knock on wood, I'm going on two weeks no crashes. Go me! Maybe I'm doing okay with resting enough. I've also been walking some to keep from doing to 90mph, 10mph, 90mph, 10mph cycle. I'm trying to always stay at 50mph. I do this by reducing stress and taking breaks.

I found a good blog noting some of the gluten free breads today:
http://blog.julesglutenfree.com/2011/04/3-days-of-expo-in-6-posts-a-rundown-of-the-latest-greatest-in-gf-at-natural-products-expo-west-5-pre-made-gluten-free-breads/

I'm worried about my trip to the Bahamas. Not because I can't find gluten free foods (I could just do no carbs) but because I'm concerned I may not be able to afford it. It's very expensive in the Bahamas to eat. I've been trying to research it. Here's what I've found:
http://wayoftheceliactraveler.blogspot.com/2011/01/taste-of-paradise.html

The Wheat Belly

Everywhere I turn on the POTS facebook pages or blogs I see people telling me to go gluten free. It was even in the information I read about Adrenal Glands. After the thousandth message I figured it must be coming close to a sign from above. I'm going to try it out.

I actually committed to it 5 days ago. So far, I haven't made it one full day. I'm committed and really really want to, but gluten is everywhere. I'm reading The Wheat Belly by William R. Davis. It's very good at explaining it so us scientific minded folk will believe it and not think it's just some new fad soon to fade. He explains that millions of years of screwing with wheat's genetic makeup have yielded something far different that what wheat originally looked like. We've made the stalk shorter to help support the larger, shaft-less grain. We've made something all together different entirely. On top of that, we add yeast to make it rise.

That's about as far as I have gotten, but like it already. Here's a sample of what we had for dinner:

Ginger Glazed Mahi Mahi

Ingredients

• 3 tablespoons honey
• 3 tablespoons soy sauce
• 3 tablespoons balsamic vinegar
• 1 teaspoon grated fresh ginger root
• 1 clove garlic, crushed or to taste
• 2 teaspoons olive oil
• 4 (6 ounce) mahi mahi fillets
• salt and pepper to taste
• 1 tablespoon vegetable oil

Directions

1. In a shallow glass dish, stir together the honey, soy sauce, balsamic vinegar, ginger, garlic and olive oil. Season fish fillets with salt and pepper, and place them into the dish. If the fillets have skin on them, place them skin side down. Cover, and refrigerate for 20 minutes to marinate.
2. Heat vegetable oil in a large skillet over medium-high heat. Remove fish from the dish, and reserve marinade. Fry fish for 4 to 6 minutes on each side, turning only once, until fish flakes easily with a fork. Remove fillets to a serving platter and keep warm.
3. Pour reserved marinade into the skillet, and heat over medium heat until the mixture reduces to a glaze consistently. Spoon glaze over fish, and serve immediately.

And here is Bob's Green Drink:

He says you can omit the flax and hemp seeds if you want a lower cal version.

MY Green Drink (398 calories)

Add all ingredients (listed below) to a blender and blend until combined.

Supplements (218 calories)

• • 1 TBSP Ground Flax Seed (40 calories)
  • 1 ½ TBSP Hemp Seed  (80 calories)
  • 1 TBSP Dulse Flakes  (8 calories)
  • 2 tsp Maca Powder  (40 calories)
  • 2 TBSP Protein Powder (50 calories)

Fruits & Veggies (180 calories)

• • 1 Cup Fresh Kale (30 calories)
  • 1 Cup Frozen Spinach (30 calories)
  • 1/2 Cup Blueberries (35 calories)
  • ½ Small Banana (40 calories)
  • 1/2 Cup Frozen Pineapple (45 calories)
  • 20 oz. H20

Great Video

I have been watching these videos from an EDS conference. This is a spine surgeon. He is talking about C1 C2 instability in EDS patients. This is great because he ties in kyphosis and all my symptoms of headache and dizziness. I've discovered in the last two weeks I am dizzy when I turn my head to the left! That's why I noticed it driving because I would check my blind spot!!!

http://vimeo.com/35766087 

Heading to Mayo JAX

To start, I had another minor crash today. I woke up around 7 am with severe stomach cramps. This kept me up until I started having the extreme fatigue around 10am. We had planned on going to church then heading to Florida. Instead, I took extra hydrocortisone and went to bed. I slept until 1 and then got up and packed the car.

I'm having to have all the testing repeated at Mayo. Not sure why other than he wants to appear to be doing something since I wrote that email, or he wants to see if anything has changed in 4 months. I'm reading up on the QSART now. It is an autonomic test to test the nerves and sweat output. I find it interesting, though. The test comes back abnormal if you don't sweat. Well, I had told him I was sweating waaaaay more than normal. Also, most people first present with burning pain in their feet. I don't have that. At all. So why would he have recommended this test? And last time it came back normal. Is it just a test he knows how to order so he does?

I really think I have EDS and he's on the wrong track completely. I think THIS VIDEO makes a lot more sense for my case. I need to study it a lot more before I see my doc on the 19th. I know I'm going to have to plead my own case. 

Well That Didn't Work

Last Thursday, I had a friend mention that I seemed very "off." This bothered me. I know I've been having a very hard time coming up with words. I've had tingling in my face and MAJOR symptoms POTS related. I got to where I couldn't bend over at all without getting sick within seconds. I felt almost manic. I was feeling much worse, but I didn't think others could tell.

Because I'm on so many of the epilepsy pages for my husband, I saw someone post they were having horrible side effects from Topomax. She said she was having a really hard time coming up with words. That did it! I had been put on Topomax the beginning of January for the headaches. I didn't really want to go on a seizure med just for headaches. Especially when I feel they are more related to cortisol than the POTS crap. My husband has been on so may and they all have horrible side effects. Unless they are for seizures, I'm not sure I'm okay with prescribing them. So I decided to stop in that night. I took all the pills out of my organizer and haven't looked back.

Today is the first day I haven't had at least a mild headache. It's been the same as it was before. Mild headache and stiff/sore neck. But that's better than feeling like you are going insane, I guess. My capacity to type has returned. I'm able to think clearly. My heart rate hasn't been racing quite so high. I've also not had the weird tiredness in my arms and jaw. It can sometimes take those meds a while to fully leave one's system. I'll report back in a few days.

I'm still very upset with my POTS doctor, though. I'm going to write it here in case anyone googles this. Juan Figueroa at Mayo Jacksonville. I was calling and telling him all these symptoms and he suggested I see my General Practitioner. Crock!! As a neurologist, he should have known I was having a reaction, or at least a possible reaction, to the medication he put me on. I'm disappointed at how he blew me off. I'm going to definitely tell him this when I see him on March 19th.

He did schedule me to have all the testing repeated. I almost want to go back on the Topomax before I go down there so he can see what it did to me. I want it to completely screw with all my tests. What an ass. I would do this if I weren't scared the med could do permanent damage. Ugh!

CRASHED HARD

So on 02/11/2012  I crashed pretty hard. I felt it coming. My vision started going first. It got blurry and going all tunnel vision around the edges. Problem was I was driving and was 2 hours from home. I took 40 mg hydrocortisone right away since I had been backing off on it I wanted to make sure I wasn't crashing on it. And because I didn't know what else to do. Then I started feeling really heavy. I started feeling as if I were going to fall asleep. Fast. So I pulled over.

I told my husband (who can't drive because of his epilepsy) that I just needed to wait a minute for my hydrocortisone to kick in. Then apparently I went to sleep for about 15 minutes. I woke up and drove across the street to a gas station. I got out of the car to go get some sodium. This was very difficult. I could barely walk. My legs were very weak. But I knew I needed to get my blood moving. So I went inside and bought a bad of chips and a Gatorade. I sat and ate some chips then felt a little better. We got back on the road.

About an hour later I felt back to where I was when I started on the trip. So it was what I would classify as a crash. I would also say it was just like the ones I had when I first started going on hydrocortisone. So I don't think it is the POTS. It was like the extreme fatigue I would feel when I would have to go lay down when they switched my meds in Boston, too. I called the Endo today and I'm going to seriously push on his end for a rescue steroid that can be given by someone else. Because Jason might have had to have given that to me and he couldn't have given me a pill. I might have thought it was the POTS if I hadn't felt it before when I was going through the hydro phases in the summer.

This is what I wrote on the POTS page on Facebook:
I hate having no cortisol and POTS. It makes it very confusing as to which is causing the "crashes" and how to treat it. And which doctor to call. They are very similar. Each doctor responds with, "Well, did you call your other doctor?" Ugh! I have to treat the dysautonomia to make the correct signals go to the pituitary for the pituitary to send the correct signal to the adrenals to produce the cortisol so my body can function. But in the mean time, I have to artificially stimulate my cortisol by taking steroids but not too much steroids because that could permanently damage my adrenals which aren't damaged they just aren't receiving the signals. But 5mg too little makes me crash and 5mg too much makes me nauseous and have a headache and I never know from minute to minute what that line is because it depends on my period and what level of activity I'm doing and how much I've eaten and the direction the wind is blowing.