Me Update: Work, Health, Going Paleo...

I haven't really written much lately, but loads of things have been going on.  We'll start with work...I'll keep it brief...

Our contract is up on1/31/2015.  So far the good new is our work duties for the next contract will stay the same.  We know nothing about funding yet, and we don't know if the contract will have to go out for rebid or not.  Those last two things are the semi-bad news (semi because it isn't really bad yet).  There is nothing I can do about any of it, so I'm not worrying about it.

On to health, the main thing I've been obsessing working with lately.

I was diagnosed with celiac back in April, and I've been eating a gluten-free diet since May.  I was expecting my overall health, which I think is actually pretty good, to improve.  I was hoping that by taking gluten out of my diet, I would improve my depression, fatigue, sleep problems, and anxiety.

It didn't happen.  Maybe I was expecting too much, but I didn't notice a change at all, except I started obsessing working to find really good non-gluten options for cookies, cupcakes, and especially bread.  I bought expensive products and expensive ingredients.  Some of them wound up in the trash.  It became frustrating and made me even more stressed and anxious than I already was.

Between the money, stress, and lack of any obvious symptoms whether I ate gluten or not, I really just got more stressed and anxious.  I was also hoping to lose weight, which didn't happen.  I actually gained a few pounds after going gluten free (I blame my trial-and-error gluten-free goodie quest for this).

Back in May, I attended the Gluten-Free Group of Gettysburg, which is sponsored by the Gettysburg Hospital.  An incredible group!  They had three tables of free gluten-free goodies and three local gluten-free bakeries selling their wares.  It was a great, friendly group of people, too.

The speaker was one of the hospital's registered dieticians, who talked about the Autoimmune Protocol (AIP) Paleo Diet, which is a more restricitve version of the Paleo diet specifically designed to get your autoimmune disease under control and heal your body from the damage that is (in part) feeding it.

It seemed hellish restrictive to me, and while I was facinated by it (people in wheelchairs from MS and Rheumatoid Arthritis have had their symptoms completely disappear!) I decided it wasn't for me.  Don't really have symptoms, do I?  Don't need it.

But I was curious, and I kept the paperwork.  I'd always thought Paleo was a fad diet with a catchy name.  Oooo, let's eat like a caveman!  Ha.  Seriously?  But in the couple months since the talk, I couldn't get it out of my head.  The man's father, who has parkinson's, went on this diet and his symptoms went away.  The moment he went off the diet (because he had to go in a nursing home) all the symtoms came back.  There was just something about the science behind this that one couldn't dismiss.

About a month ago, for some reason I decided to look up the general Paleo diet.  I found myself on a website called PaleoLeap.com, which has extensive information on the science, why's, and how's of Paleo.

I was hooked.  I'm such a science geek, and I just devoured the nutrition info.  I couldn't believe how vegetable oils affect our bodies.  The BS I've been fed about what triglycerides are.  How bad beans and grains, ALL grains, are for the human body!

And this was part of what I needed!  That obsession with finding a wheat-alternative and acceptable, tasty baked goods was doing as much damage physically as it was mentally and emotionally, and I didn't realize it.  When I realized how stressed out I was trying to find pasta and bread I could choke down, added to the Paleo info, it was a no brainer.

So, I'm off ALL grains (including corn).  ALL legumes (including soy and peanuts).  ALL vegetable oils.  Paleo also doesn't allow dairy, but I'm doing limited dairy.  For now, I'm not following the AIP, but I might try it out in the future.

I'm going to stick with this for about 6 months and see what happens.  So far, the changes I'm seeing are minimal, but it's only been about 3 weeks.  I'm down 4lb.  I felt out of control when I was struggling to find a wheat-alternative; now I feel more in control by saying I don't eat grains, so it is now a non-issue.  That one step has greatly improved my outlook and taken a huge stressor off my back.

I'm going to update things here on a weekly basis (fingers-crossed)  I'll also add some really good Paleo blogs on the right bar when I get time.

The (Inevitable) False Start

I officially pushed the Gluten-Free button on Monday, April 14.  I went in to work and made a cup of my coffee alternative, Dandy Blend, only to realize sometime later that day that it has roasted barley and rye in it. 

I threw the Dandy Blend out that night.  Switching to tea and the occasional decaf coffee when I can’t stand it anymore.

On Tuesday night, I realized the melatonin supplement I take before bed has wheat in it.  That also got thrown away; I still haven’t replaced it but I have something earmarked on Amazon.

Tuesday and Wednesday were totally gluten-free.

Thursday I had a doctor’s appointment.  She sent me for bloodwork that needed to be taken while I’m eating a gluten diet, so I’ve been glutening the hell out of myself for the past few days, eating things I’m guessing I won’t be able to again.  Ever.  I will have a Kit Kat before it is all said and done. 

I’m going to re-push the Gluten-Free button after we go out for our anniversary dinner this weekend, so either Sunday or Monday.  Then, that will be it….unless the bloodwork comes back with questions.  I’m also getting tested for milk, corn, and soy allergies since the villi atrophy can be caused by those, too.  We’ll see.

After reading some of the things some people have to deal with, and some things that have been said to Celiac people, I am thanking my lucky stars that I know food as well as I do, that I can cook raw veggies, that I can cook from scratch at all.  Some people think white and wheat bread are….made from different things!  Like there is a grain called “white” and one called “wheat.”  Seriously!  WTF, people. 

I already got rid of some cereal that only I eat, the two bags of whole wheat flour, and the graham flour went out to the chickens.  I kept the all-purpose flour and the regular pasta for the Hooband because he asked me to.  I guess he plans on using them sometime when I’m not eating or not around.  I still need to delve deeply into the cabinets, see what has been lurking there for a long time, and purge it as well.   You know, those things you forget are back there for years?  Those things.

I’m collecting recipes (Oh, that reminds me: Must. Weed. Recipes), and planning meals for the week so there is no last minute what-do-we-want-to-eat-tonight baloney. This is also going to make this year's garden that much more important....but that's a post for a later date!

Gut Feelings, Part....Whatever

So.  Switched docs, scheduled another EGD, and had that a couple weeks ago.  This was my third EGD, but my first with biopsies.  If you remember, the doc had told me you can't diagnose Barrett's Esophagus without a biopsy, so he wanted to do one of those.  I was all for it and was just sure it was going to come back positive.

I've been doing gut research a lot and as you may know you can't get away from the gluten issue when you do gut and food research.  The more I read, the more I wondered if that may be part of my problem.  So, as I was laying on the bed with a tube in my arm, chatting with the doc, I asked him if he could do a Celiac test, too.  They biopsy your duodenum.  He hedged at first, saying I didn't have a history, but then said he could do it because I have Gastroparesis. I was sure this test would come back negative.

I'm glad I didn't bet money on it.

The Barrett's test came back negative, which is great news!
The Celiac test came back positive.  I need to go on a gluten-free diet.

So.  They said I have mild Celiac, which just means my damage in my intestine is minor...for now.  Who knows how long I've been symptomatic?  Also, I don't know what my overt symptoms are.  I don't have gut pain, cramping, or diarrhea.  I'm curious what my symptoms will turn out to be, and I'll really only know as they disappear.  I'm hoping it will turn out to be the cause of my sleep problems, irritability, depression, and fatigue.  I'd love to lose all those.

I pushed the Gluten Free Diet button yesterday.  I did some grocery shopping to pick up thing on Sunday.  My god, gluten free bread is expensive!!  $5-7 for a small loaf.  I bought a mix for $4 instead and made my own.  As I get better at this, I'll lose the mix and just do it from scratch, but right now I'm happy to rely on the ready-made stuff as much as I can while I learn.  

The boards say you can see results in as little as a week.  I'll check back in on this next week!

Gut Feelings, 4: New Doc, New Diagnoses

So.  A new doctor, a new diagnosis, a new eating plan, and a new set of questions.

First, I like the doctor.  He threw his pen down 4 times in shock of what tests and procedures had NOT been done at various times in my medical story.  I like that.  He is a squirrelly little guy, not what I expected, but he definitely knows his stuff.  I like him.  But of course I liked the other guy, too, so we’ll see how this goes.

He wants to do another endoscopy on me with biopsies this time, as Barrett’s Esophagus cannot truly be diagnosed without biopsies to check the cell structure.  He will also measure the hiatal hernia and a few other things that have never been done before.

He diagnosed me with gastroparesis, which is delayed emptying of the stomach.  Literal translation is “stomach paralysis.”  Mine is not bad, thank goodness, as some people are on all liquid diets or feeding tubes because they can’t tolerate foods at all.  I knew I had delayed stomach emptying, but my previous doc left me feeling that it was a minor symptom of my existing gut issues.  I had no idea it was an actual condition or something that stood on its own, so to speak.

There is no cure, no drug to fix it, and diet changes only manage symptoms.  You can’t make it permanently worse by eating wrong, but you will exacerbate the short-term symptoms.

Turns out the diet for this excludes EXACTLY WHAT I HAVE BEEN EATING THE PAST FEW MONTHS to control my acid reflux:  nuts (because they are alkaline), dried fruit and whole grains (because they soak up stomach acid).  All these things take so long to digest they are not recommended for GP.  Great.  Also, no (NONE) raw veggies (this means no salads), no veggies or fruits with skins (apples, green beans, dried beans, celery, figs, etc.).  No berries. 

All veggies need to be cooked.  I can have potatoes (white or sweet) without skins, most other root veggies, some greens, cooked peas (shelled), carrots, tomatoes (but I’m not supposed to have them because of the GERD), etc.  No beef or pork.  Chicken and fish are ok but I can only have 2oz portions at a time.  Protein drinks, soups, purees, smoothies, juices, etc., are recommended as supplements.  Dairy is ok. 

So, at this point I’m wondering if the GERD exacerbates the gastroparesis, or vice versa.  We will see how things turn out as I change my diet yet again.  I’m eating a small meal about every 2 hours.  One thing I can say is it is helping me with some slow weight loss.  My meals tend to look like this:

• 9:30 – Cascadian Farm granola with almond milk 
• 11:30 – an Orgain shake  
• 1ish – leftovers or soup or something similar.  I hate soup. 
• 3ish – crackers with almond butter and a banana   
• 4:30 – yogurt or cottage cheese and a hardboiled egg or something  
• 6:30 – dinner.  This is my biggest problem, as my husband is a serious carnivore and I     can’t really do that anymore.  So, I make a “normal” dinner, then eat what I can.  I usually go to bed hungry and wake up even hungrier.

I didn’t have any of these gastroparesis symptoms until a couple years or so after I started taking Prilosec.  I really do think the meds caused it or made my stomach somehow lazy, but very very few studies have been done on anything with GP, so the doctor pretty much told me the answer was no, there was no correlation.  Right.

I’ve found a fantastic resource in Crystal Saltrelli, CHC.  She is a certified health counselor who has gastroparesis and has worked to gather information to help sufferers deal better. She has videos, books, podcasts, a blog, and has worked to put a lot of information into the hands of people who have this condition.  I'm grateful she has.

Gut Feelings, 3

I’m off coffee, which wasn’t too difficult because I only drank a cup a day and that I nursed along all morning.  More out of habit than for the caffeine kick it would seem.  I’ve switched to Dandy Blend and like that very much.  I almost never have any citrus.  I think I miss that the most, I used to have lemon or lime in my water all the time at home, and grapefruit and clementines every day during the winters.  I use zest instead of juice in recipes to get the flavor without the acid.

Tomatoes I do have occasionally; when I eat pasta, I usually put a tablespoon or two of sauce on my pasta, then embellish it with some olive oil.  That seems to work well.  Alcohol is trickier.  I seem to be OK with beer, but not with wine.  I haven’t had a mixed drink with liquor since before May.  Oh, that’s not true, I did have a small glass of the mint julep liquor I made and it seemed to go ok.  But my favorite cocktail was the Sidecar:  lime juice, sweet and sour mix, brandy, orange liquor.  Doubt I’ll ever have one of those again.

I do still cook with onions and garlic, but I find I’m cooking less because I have less time to do it in.  I find we’re eating more pre-prepared meals: frozen veggies, a burger, and another easy to prepare side.  Tacos from a kit, just veggie chopping.  A frozen chicken spinach lasagna.  Chicken on the grill with 2 sides.  Bagged salad.  Applesauce we canned last fall.  For anything more than this, planning and prep needs to go into it, and I am the only one in the house that does that.  So, it is all on me.  Another stressor.

I’m going to the gym once a week for their BodyFlow class, which I love.  A mix of Tai Chi, yoga, and Pilates (heavy on the yoga, though).  I can’t believe it, but I started running with Tillman a few weeks ago.  Right now it is only once a week for about half an hour.  We run until I can’t breathe, then walk until I recover.  Rinse and repeat.  I may add a 2^nd gym trip in each week, but I want to talk to the doctor first.

Ah, yes.  The doctor.  I’ve decided to get a 2^nd opinion so I have an appointment this week with another GI specialist.  This one is a DO, not an MD, so we will see if he is willing to play ball with me in my decision to get off my meds.  I have a LOT of questions and the thought of going back to my other GI did not appeal.  Last time I was in there and asking questions, he did a lot of head shaking and Tsking.  It really rubbed me the wrong way.  I like him, and I like the “get you off all meds” stance, but don’t treat me like that when I have questions!!

I did a lot of research about the Omeprazol (Prilosec, Nexium) that I’ve been on for 15 years.  I don’t like what I’m reading.  Besides deficiencies in B vitamins, calcium, magnesium, and others, it also appears that if you stop taking it cold turkey you get what they call “acid rebound.”   It is better explained here, but basically your stomach goes into overdrive making more acid than ever before, which means your symptoms are worse than ever before.  Most people go back on the meds immediately when this happens.  It also happens with H2 meds (Pepcid, Zantac).

So, the only thing to do is to wean yourself off or bear the brunt of 3-6 MONTHS of intense burn.  I’ve been weaning since September.  I’m now at a half dose, 10mg 2x/day, and things seem to be going ok.  I’m having a bit more heartburn than had on 40mg/day, but barely.  It is manageable with diet and that’s the whole point.  It is much much much more difficult to change your diet and lifestyle than to just say “Oh, I can take a pill for that!” but that’s what I’m trying to do.

The new GI also does nutrition and diet counseling, and that is half the reason I’m excited to switch.  I want to lose more weight, I want to eat better so I don’t have to take these meds.  I don’t understand why steak one night is fine but another night causes me problems.

So, I’m excited!  I will let you know what he says. 

Gut Feelings, 2

In 2012, I started to notice I was having a bit more heartburn again.  I started taking Tums more.  I had no idea, and still don’t, why this was happening.  I hadn’t changed my medication dose in a while, I hadn’t changed my eating or drinking habits.  No idea why this was happening.

In May 2013, we went on a mini-vacation to the beach for a weekend.  Our last morning there, I got sick.  We had gotten take out tacos and stuff the night before so I’m guessing it was something from there.  I had diarrhea, which I never have.  My issues are always upper GI.  My body was desperately trying to flush something out, though, and let’s just leave it at that.  I did throw up once.

After we decided I was stable, we left on the 3hr drive home.  It started out fine, but the longer we were on the road the oogier I felt.   It wasn’t nausea, but I just did not feel right.  We got home, we both crashed and took naps.  I woke up about 2-3 hours later, drank some water, and about 20 minutes later threw up blood in the form of what looked like coffee grounds (how it  normally looks when this happens).  Hm.  

I went to the doctor the next day and she confirmed it.  She decided to treat me like I had a bleeding ulcer, the worst case scenario, but said most likely I had broken a blood vessel when I threw up the first time and had been slowly bleeding into my stomach.  I hear that is not too uncommon, actually.  The good thing it was only once; if I had continued to throw up blood, I could have bled out and died.  She prescribed me a horrible chalky liquid to drink 4xday to coat my stomach, and I was to take an OTC Zantac twice a day.  And see my GI specialist.

2 weeks later, I did and he took me off the liquid chalk because it was upsetting my stomach.  I had lost 15lb in the 4 days after being sick, mostly because I was scared to death to eat anything because I might tear open whatever had bled.  I still had little appetite, too, and I was on soft food.  I ate a LOT of applesauce, cottage cheese, and bananas.

2 weeks after that, I had an endoscopy, 6 years since the first one.  He saw no reason for the bleeding, but by then a month had passed.  No bleeding ulcer.  We’re going with the “broken blood vessel” theory. He did show me pictures later of my lower esophagus, red and inflamed.  Barrett’s Esophagus again.  But I don’t understand why.  I mean, I’m guessing it was caused by the increased heartburn I was experiencing.  But the last time I had it (in college, remember?) I was not medicated for my heartburn.  Now I am, why did I have the increased heartburn?

He increased my dose of Omeprazole to 20mg 2x/day.  He took me off the Zantac.  I’m not supposed to eat after 6 (difficult, I don’t get home from work until about 5:30), no citrus, caffeine, fatty foods, fried foods, tomatoes, onions, or garlic.  No lifting heavy objects.  No bending or twisting.  He specifically said, get this, “No gardening.”  When I asked about the kayak, he said to go out for a short run and see how I felt (felt fine, so we’ll just go with that).  

To say I’m frustrated is an understatement.  I am SO frustrated when I think about all this.  And angry.  I mean on one hand, I’m very grateful that this is worst medical problem I have.  It could be a lot worse, I know.  But I am dealing with some pretty major lifestyle changes and I’m struggling with them.  I’ll get into that and my decision to try to get off my meds in part 3. 

Gut Feelings

As I mentioned in my 2013 review, I had a health scare last year.  Since May, it has become a big deal for me, something I think about or deal with on a daily basis.  In my research I have noticed a lot of other people with similar problems also looking for information or help or just wanting to know someone else out there is dealing with the same kinds of issues, so I want to document a bit on how I am trying to take my power back when it comes to my health.

I have suffered from daily heartburn since I was in 11^th grade.  I didn’t know it, but I had a hiatal hernia. I carried Tums in my pocket every day through the rest of high school and through 5 years of college.  After graduating and getting (a haircut and) a real job, I finally had health insurance (which my parents never had) and went to the doctor, where I was finally diagnosed after having an Upper GI test.  They put me on a prescription for a fairly new drug called Prilosec.  This was around 1999.

During college, I also started to have trouble swallowing.  This was a side effect from what eventually was coined Barrett’s Esophagus.  That was never diagnosed for me, but I’m sure that’s what was going on.  

After starting Prilosec, I was a new person!  I didn’t have daily, almost constant heartburn, could live, eat, work, sleep, do just about anything.  I wasn’t taking Tums constantly, and eventually stopped carrying them with me because I didn’t need them.  My swallowing issues disappeared.

Years went by, and in 2007 after I had some ongoing possible gallbladder pain, my PCP sent me to a gastro specialist.  The gallbladder thing turned out to be nothing major, but he did do an endoscopy on me to look around.  He told me at the time that there appeared to be nothing other than the hiatal hernia.  My stomach didn’t seem to move food along as quickly as it should, so he prescribed Reglan for me, a low dose.  Around now I was also switched from Prilosec to Nexium, the next generation of the med.

Looking back on it I see that since the time I was first put on meds I have very, very slowly started to develop problems eating.  I would have a normal dinner, then wake up in the middle of the night, say 2-3am, and my dinner was still in my stomach and I felt sick.  Really not good. 

This started to happen more and more, and sometimes during the day I would develop indigestion from whatever I had eaten, and it would just sit there in my gut, and I eventually would throw it up.  I learned a few ways to mitigate that to help my stomach move things in the right direction and those would work most of the time, but occasionally I would still get sick.  

At some point around here, I was switched from Nexium to generic Prilosec (Omeprazole) at a dose of 40mg a day, which was eventually reduced to 20mg a day.  My GI specialist, whom I like very much, told me his goal was to get me off all meds and he believed it was possible with proper dietary changes, weight loss, and lifestyle changes.  I lost 30lb in 5 years, started exercising more, and did change the way I ate some.

I discovered certain foods just stopped agreeing with me.  The worst was pork or pork products like sausage.  Again, these things came on very slowly, so slowly that I couldn’t figure out what was causing it.  

I now believe the drugs I’m on, over time, have changed my digestion so that while I am on them I am pretty much not digesting food but more likely fermenting it.  Prilosec and Nexium are supposed to reduce your stomach acid to less than 10% of your norm.  You need stomach acid to digest properly, therefore no acid, no digestion.  Many studies have now shown serious common deficiencies in B12, calcium, and a variety of other vitamins or minerals occurring often in people who take PPIs or H2 inhibitors, for exactly the same reason: you need acid to break down and/or absorb these things.

This is my backstory.  It is important to me to get this out, especially in light of an incident in May that really woke me up to my gut problems, how the drugs I’m on are affecting me, and what I’m deciding to do about it.  I will talk about that soon.  

I also want to put in a standard disclaimer: this is my story and my experience.  I’m not a doctor, and my decisions and choices are made by and for me.  I talk about them here for informational purposes only; you are on your own.