Celiac Disease

I've mentioned in my last couple of posts that I haven't been doing very well. This is the post where I explain why. Warning: It's a long one.

I have Celiac Disease and I got "glutened".

Celiac Disease (or Coeliac Disease for those who speak the Queen's English) is an autoimmune disease. It's a very serious, chronic disease that can only be treated by going on a gluten free diet. Never ever eating anything with gluten in it for the rest of my life. There is no other way.

Gluten is a protein found in wheat, barley, rye, and most oats. If gluten gets to my small intestine very bad things happen.

You see, everybody's small intestines have these wonderful little things called villi. The villi are little fingers that stick out and act like vacuums, sucking up all the nutrients in food. Not just at the top like a little tube, but all along their length. Those villi get all up in the food like a pig wallowing in the mud, happily absorbing all the vitamins and minerals they can.

With Celiac Disease those happy little piggy villi react horrifically to gluten. The gluten damages those little fingers. It flattens them out. Instead of long fingers sticking out, I end up with smooth sides. The surface area for absorbing nutrients diminishes greatly.

Image from UCLA Health

Basically, untreated Celiac Disease is the same as walking around malnourished. This is why as a pre-teen I walked around looking like a concentration camp survivor. That's not an exaggeration, kids can be mean but they're usually pretty honest in their cruelty. That's not to say that people with Celiac Disease can't be overweight. They totally can be, it's just another way that their body is trying to cope with the disease.

As I said, the only treatment for Celiac Disease is to go on a completely gluten free diet. This isn't something I do for fun, to be trendy, or to lose weight. I have to eat like this for the rest of my life. If I don't there are consequences, immediate and long term.

The immediate effects are pretty gross, to put it delicately I get gastric distress. It's a lot like food poisoning, but it takes a little longer to kick in. I also get at least one giant cystic pimple on my chin, just in case I don't feel bad enough I get to look terrible too! The next few days are filled with headaches, joint and body pains, and my depression kicks in too. For the next few weeks I'm weak and tired, and much more likely to catch any sicknesses that are going around. If I'm lucky I'll start to feel better after two weeks.

Those are the effects of just getting a little bit of accidental gluten. Some times I don't even know where it came from. Usually it's from eating out and getting cross contamination* sometimes it's as simple as getting a kiss from Joey too soon after he's had a sandwich.

Long term the effects are much more dire. Cancer. That's right. If I get too much damage in my intestines I can get cancer.

"If a person with celiac had the disease undiagnosed for a long period of time, or fails to maintain a gluten-free lifestyle after diagnosis, the chance of developing small intestinal cancer increases. Those with celiac disease are especially more likely to develop lymphomas in the small intestine because of their compromised immune system. In the past the increased risk of celiacs developing lymphomas was quite high, 40-100% more likely. However, more recent studies have shown that the risk of lymphoma is slightly higher than the normal population—much less than previously believed—and that this risk reaches unity with the normal population after a gluten-free diet has been maintained for several years." From www.CeliacCentral.org

Like I said, this is no fad diet. This is serious stuff.

I wasn't diagnosed with Celiac Disease until I was 26 years old. That's a pretty long time to be malnourished. My daughter was diagnosed two weeks after me. She was six. Luckily for her, we caught it before it could cause any long term problems. She's completely healthy now (as long as she maintains her diet.) She's a healthy weight and she's growing very well.

Unfortunately for me, I'm still having problems. My bone density is low. I don't have osteoperosis yet, but my bones aren't as dense as they should be. I've lost height. When I was 18 years old I was 5'8.75" tall. As of July 30th I'm now 5'7" even. I'm also dealing with random pain and tiredness that my doctor calls Fybromialgia (I'm not 100% sure if I agree with the diagnosis and will have more tests done when I can.)

Since I'm still having problems my husband and I have decided that our whole house is going to go gluten free. When we go out to eat the boys are welcome to order as much gluten as they'd like, but they aren't going to be bringing any of it into the house.

This is going to take some serious preparation on my part. Since I somehow got accidental gluten in July (twice judging from the nasty pimples that popped up) my house has gone to the birds. I'm not the best housekeeper in the best circumstances, with being sick for so long the house has a similar look to a disaster area. I've got to get things back in order so that I can get in the kitchen and cook a lot. No more quick convenience foods, I need to make it all.

To add insult to injury, I've been on a lower dose of my depression medication. *sigh* It's a long story, but the gist of it is that my doctor moved two hours away and I couldn't get in contact with anyone to get a prescription refill. When I finally did manage to catch somebody on the phone it was only to be told that I had to get a new doctor and a new prescription. By this time I was nearly out, so I had to start taking a smaller dose to try and ration what remained. I'm currently taking 1/3 what I need. This means I'm barely functioning. Luckily, the new prescription will be ready by some time next week. Within a week or two of being back on my full dose I should be back to normal. Well, normal for me anyway!

So there you have it. The full explanation why I've been feeling so terrible for so long. Things are starting to look up, but I've got a ways to go.

If you want more information I have another blog, Everyday Celiac. I haven't updated it lately, but there are some resources there.

*Cross contamination is when I get gluten, not from eating something containing gluten, but from gluten being transferred to my food. For example: this happens when a restaurant used a cutting board to cut my food right after cutting bread, or when they fry my food in oil that has had breaded food fried in it. Things like that are called cross contamination and they make eating anywhere but at home a gamble. 

Weeping Angels and Rainbows

I haven't been feeling very well the last few weeks. My depression is acting up, and I think I got some accidental gluten.

That doesn't mean I haven't kept busy! When I was feeling really down I somehow managed to convince my husband to go to the local yarn store, The Needlepoint Joint, and pick out some yarn for me. Reason #545 why my husband is the best, he hates yarn stores.

It worked! I was cheered up and I turned that yarn into a hat and mittens.

They're very soft and very cheerful. I haven't blocked anything yet, when I do the lacy pattern will show up better. I found the patterns on Ravelry, they're called the Cafe Au Lait Tam and the Cafe Au Lait Mittens (expanded from the Cafe Au Lait Mitts.)

I call them my Rainbow Tam and Rainbow Mittens. You can check here for the project page on my hat, and here for the mittens. I'm not 100% done with the mittens yet. I am going to knit a lining for them so that they're extra warm. I plan to use them for driving the kids to school on cold winter mornings.

I've also managed to do my nails. I trimmed them super short again, and wasn't up for being super creative. I decided to just swatch the Weeping Angel polish I got from A'dor Beauty Supply when I bought the other two polishes that I love.

This one didn't disappoint!!

I couldn't help but use my new hat as a background. 

It's got a grainy texture reminiscent of stone (just like a real Weeping Angel) in a pretty silver color. There are also some subtly iridescent flecks of glitter. Not nearly enough to be overwhelming, just enough to be fun! This is another polish I bought for my daughter but fell in love with!

Pictured is two coats (I probably could have gotten away with one, but two looks better) over my normal base coat. I didn't do a top coat because I didn't want to ruin the texture. It's been a few days since I polished them and so far I haven't had any chipping.

Happy 2012!!

Happy New Year everybody!  I hope you all had lots of fun last night!  I stayed up with my two oldest kids watching Netflix and playing on my laptop.  I just happened to notice that it said 12:00 on my computer and just sort of told the kids, "Hey guys, it's Midnight.  Happy New Year."  They were a little disappointed that we didn't watch the ball drop, so I guess I'll have to tune into that next year.

I don't make New Year Resolutions.  I know myself well enough to know that I won't keep them.  I have enough problems with guilt, I don't need to add to it.  I'm also not superstitious about the New Year.  I like traditions about starting things fresh, so I do try to start the year off with a clean house.  I just don't think it feels like a new year.  I prefer Chinese New Year.  At least that happens closer to Spring.  Then it really feels like things are starting over.  Right now everything in Nature is still hibernating.  There isn't anything fresh.  Nothing feels new.  I like to celebrate New Year traditions near Easter.  That's when I really feel like shaking off the old and welcoming the new. Especially since I've been living here in Northern Utah.  By Easter things are (usually) starting to bud and the weather is warming up.  Watching the world wake up and come back to life is a great motivation for me.  Midwinter just makes me want to curl up with a book and a cup of peppermint tea.  Winter makes me feel like hibernation is really the best idea, I'm not exactly motivated toward action.

So there it is.  Today is basically a regular day.  Eric let me sleep in really late and I've been spending the rest of the day working on some housework.  We skipped church since Eric is still fighting this stomach bug that won't let go and everybody else was up so late.  Pretty boring.

I do have a goal for 2012.  Not a resolution, just a goal.  I want to be better about updating my blog than I had been in 2011.  I really got started posting regularly around my birthday in October, so this isn't a recent goal.

Dressember really helped me.  I had to not only get dressed up but part of the challenge was to post your outfit on your blog every day.  Now that Dressember is over I'm looking for more blog challenges like that.  If anybody has any ideas I'd love to hear them.

I'm not just doing this blog to entertain my few readers.  If I am entertaining then it's a bonus.  Writing in this blog is a lot like journaling for me.  I can post how I'm feeling and what I'm doing and learn some things about myself.  When I keep up with my blog I seem to do a lot better emotionally.  My meds can only do so much to help with my depression.  Any other tools I can keep in my arsenal really make the war easier to fight.

Speaking of which, if you happen to notice that I haven't posted in a while that's probably a sign that I'm having a hard time.  Dropping me a little note would go a long way to help.  When I get depressed it's hard for me to ask for help.  Sometimes I don't even realize how bad things are getting until I'm already buried.  Having a little wake-up call can help me stop digging myself into a hole while I'm still able to climb out.

Wow, got a little dark there didn't it!  Sorry about that.  I hope I didn't kill your New Year's 'buzz'.  I really do wish all of you a stupendous 2012! If there is anything I can do to help you with your resolutions, just let me know.  I am a great listener and I love to motivate people!

I wasn't sure what to blog about today.  I didn't do any crafts, no new recipes, just a regular day.  I thought about introducing you guys to some of my favorite websites, but hadn't narrowed it down to one.

I randomly checked my Facebook, and saw that Allie Brosh had finally posted a new Hyperbole and a Half.  Yay!  I love her!  She's so funny and her drawings are adorable. I just love the way she thinks.

Super excited, I hit the link and read the post.  Adventures in Depression.  Not so funny.  Well, okay, it had funny moments.  Mostly though, it was sad.  She tells her readers about her past few months and her depression.  Just reading it made me feel like putting an arm around her and giving her a big hug.  Letting her know that I understand.

I understand what it's like to have that voice in your head that is constantly telling you what a waste you are.  I know what it's like to feel like you only have friends because of what you give them.  "She only likes you because you make her laugh."  "He only likes you because he's friends with your husband."  "You really bug them but they're too polite to tell you to get lost."

I know what it's like to have a huge pile of laundry or dishes that is so big and has been there for so long that I hardly see it any more.  I stop seeing the mess as a self-preservation tool.  If I really saw the mess then I'd have one more voice telling me what a horrible housekeeper I am.

I know what it's like not to care about what I look like because caring would mean that I was worth the time it would take to fix myself up.

I still suffer from depression.  I always will.  I'm lucky, I was blessed with an amazing husband who saw the signs in me and demanded I get treatment.  It's still an uphill battle.  Even when I get my medicine right my body can become tolerant of it and I have to adjust my dosage.  I still have good days and bad days.  Even with the medicines every day is a struggle.

Even little things that other people take for granted like getting dressed or making myself something to eat are a struggle.  When I say struggle that's exactly what I mean.  It's a fight.  I'm fighting against those nasty voices in my head that are telling me I'm not worth it, I don't deserve it, why waste it on me.  I'm fighting against the apathy and the physical pains.  Simple things like this can be completely exhausting.

Just getting my kids ready for school can wipe me out for the rest of the day.  Grocery shopping isn't something I've been able to do on my own for months.  The last time I tried it took me 4 hours and I was exhausted for three days afterward.

I'm not typing all this out because I want you to feel sorry for me.  When I read Allie's story I wanted to give her a hug and get her some help.  While I welcome hugs, I am already getting the help I need.  I'm actually doing pretty well right now.

I'm typing all this out for two reasons.

First, for anyone else who might be feeling this way.  It's not normal.  There are ways to feel better.  Talk to somebody.  Anybody.  Try medication if you haven't, try therapy, if those things haven't worked for you feel free to talk to me.  I'll try to help you find some solutions.  Just keep trying.

Second,  for those of you who don't know how this feels.  Try to be a little more understanding.  You can't tell somebody with depression to "Just cheer up!" any more than you can tell somebody in a wheelchair to "Just get up and walk!"  Yet mental illness is looked down on as some kind of moral failing.  I'm a talented, smart, loving person who also happens to deal with mental illness.  Just like a diabetic has to manage their illness, so do I.

This is a great article for helping people understand "hidden" diseases.  The lady who wrote that is talking about Lupus, but she might as well be describing my depression and anxiety.  It's a really great analogy.

I believe that mental illness is a war.  Every day is a constant battle.  Medication and therapy are just a few of my weapons against depression.  I also believe that this is probably a battle I will fight for the rest of my life.  I could let that last part overwhelm me, but I won't for one good reason:  I believe that as long as I keep fighting and doing the best I can do then I'm winning.  As soon as I give up I lose.  I'm too stubborn to stop fighting.  The things I would lose if I let my illness take over my life are too precious to me.  I won't lose my kids or my husband to something like this.  I will fight every moment of every day because even if those voices tell me I'm not worth it, I know in my heart that my family is worth it.

Today's Sky: Partly Cloudy
Stars Made Today: 1

Updates. So many updates...

I have neglected my blog. Bad Heather. I've decided to try to keep it up better for my own sanity.

I do have a few readers, so for anybody still paying any attention to me I thought I would post some updates for my older posts.

Celiac Disease:

After my little experiment two years ago I found out that I do indeed have Celiac Disease. No doubt. Since that point I have not intentionally eaten anything containing gluten. I still get accidentally "glutened", especially when I eat out, but overall things are much better. The Gluten Free Diet has become rather trendy, so there are new companies coming out with gluten free options all the time. Unfortunately there are no current regulations on GF labeling, so I still have to be cautious when trying new foods.

I also started my own blog about gluten free living, Everyday Celiac. Feel free to visit and send friends. I haven't updated it in awhile, but I have a few posts planned for the near future.

Overall Health:

I am no longer underweight. I am on the low side of normal with a BMI of 19. Over the summer my boys got the flu and for the first time ever I didn't get sick! This past week Eric caught a cold and again for the first time I didn't catch it! Huzzah!

I've finally gotten my appetite back and actually get hungry at meal times. I have to eat small frequent meals or I get really uncomfortable, but at least I'm eating again.

I'm still struggling with fatigue and some other issues, I'm working with my doctor. Hopefully someday we can figure those out too.

Depression:

I'm still struggling. I'm back on meds, currently taking Celebrex and really liking it. I have an appointment to see a Psychiatrist soon, so things might change. If it doesn't get too personal I'll update you.


I think that's about it. If I've forgotten something let me know.

Bad Ideas and the Summer From Heck...

First a little background info.

When I was diagnosed as having Celiac Disease there was a slight possibility that the atrophy in my intestines was from a recent bout of gastroenteritis and that I did not actually have Celiac Disease. The blood tests that indicate Celiac Disease were all negative for me. The blood test being positive means that you definitely have Celiac Disease, but a negative does not mean that you don't. Confusing, but my gastroenterologist (gut doctor) told me that the best idea would be to go on the diet and see if it helped me. He told me that if I ever doubted my diagnosis that I could just go off the diet for two weeks and see what happens. If nothing happens then I'm not a Celiac, if I feel crummy then I know that my diagnosis was correct.

Fast forward to this past August. I started thinking maybe I don't have Celiac Disease. I was feeling worn out and having stomache pains, and since I was on the Gluten-Free diet I thought that maybe there was something else causing all my trouble. So my hubby and I decided to do the two week trial. Just to see.

Usually, when I think I've been "glutened" I feel some... umm... "bowel distress". I compare it to food poisoning. It is pretty much in direct proportion to how much gluten I have ingested. The first time I might not even feel it. The second time, however, it is like salt on a wound. Much worse. Then I heal and I'm fine again. Normally there are no lingering effects.

I started back on the "regular" diet on a Monday. It was beautiful. I was able to eat things that I had been dreaming about, mostly fluffy rolls and turkey with actual gravy from a restaurant. It was nice, very nice. I went a whole week not feeling a thing. No tummy pain, no "distress", none of the bad stuff at all. I was actually starting to think that my diagnosis was wrong and that I was going to be able to lead a normal life again.

Then came week two.

The Sunday of my experiment came and I was feeling run down and achy, almost like I was getting the flu. By Sunday afternoon I was so sensitive, that the slightest touch felt like someone was pushing on a bruise. Speaking of bruises, I noticed a few more bruises than normal that I had no explanation for. (FYI I bruise easily anyway, so I mean that I had bruises on my arms and legs not from the normal bumping into furniture.) I stayed on the "regular" diet because I had a lot of treats that I'd bought and I wanted to finish them so as not to waste money.

I gave that up by Tuesday. I was miserable.

It was horrible. If I had been running a fever I would have sworn that I had the worst flu EVER. Nope. The Gluten Monster had returned, and with a vengeance. Not only was I in "distress", but I was hurting in ALL my joints, achy in every muscle. Plus I was in a really, really bad mood. My depression was bad, and my anxiety was horrible too. Lucky for me that Valerian Root really works.

I'd had a week of fun, and it took TWO MONTHS for me to recover. That's right, two whole months. I was useless. Here it is the end of October, and I am finally feeling normal again. I have a really understanding husband. (The preceding was a huge understatement!)

So between the Serotonin Withdrawals and the Celiac Monster, I was not much fun this summer. We were able to squeeze a nice visit to my family in Phoenix over the Fourth of July, between my self medical experimentation. I feel bad for my kids, there wasn't too much fun this summer, but they did get lots of fresh air and sunshine playing in our backyard!

Okay, I know this was a horribly long post, but I wanted to give some explanation for my disappearance these past few months.

As a post script: I figured out that I'm sensitive to high-fructose corn syrup, especially in soda. Avoiding it seems to take care of the other problems that I was having when I decided to do the "regular" diet experiment.

Gaining Weight

I've gained 8 pounds since stopping the Effexor XR. I'm not sure that I am pleased. It is actually freaking me out a little. I have never gained so much weight so quickly. Well, except for when I was pregnant. That is definitely not the case now. It's just me eating. I haven't missed a meal. Which is good, don't get me wrong. I just didn't expect to gain so much so quickly.

Life moves on...

I apologize for the large break between posts. Things have been a little hectic around my house, for multiple reasons that I won't be going into yet.

The one thing I will blog about for awhile is my new found sense of well-being.

Due to various circumstances I decided to stop taking my Effexor XR depression and anxiety medicine and go a more herbal route. One thing I want to make very clear is that my husband has been keeping a VERY close eye on me. I didn't just go into this blindly. I knew I would have some pretty serious withdrawals, and he has had the time to take care of me. I DO NOT recommend doing what I did unless you have some incredible support behind you! I stopped taking the Effexor cold-turkey and started taking an herb called Valerian Root. I have had enough therapy and have dealt with my depression for long enough that I have found some pretty effective ways of dealing with it. It is my anxiety issues that just kind of sneak up on me. The Valerian Root is an excellent tool to help me with that. I've been off the meds for almost three weeks, and I am really feeling good.

Two weeks ago was a completely different story!

I did some research into Effexor XR and it's side effects and realized that the medicine could be the cause of most of my physical problems. From my lack of appetite to my sleeping problems, they were all listed as possible side effects. Those and quite a few more. None of my health care professionals ever told me that so many of my problems could be caused by the medication, and the little insert that came with my prescription said that the side effects were rare. I don't know why I didn't put it together sooner. Maybe it was because I started feeling so much better when I first started taking the Effexor that I didn't notice the side effects, or it could be that the effects got gradually worse as I was put on a stronger and stronger dose.

I stopped the Effexor and the next day I started the withdrawals. I knew it was going to happen, any time I missed a dose of my meds I would feel it within 24 hours. I had a really hard time, especially with motion sickness and nausea. Just turning my head would make me incredibly dizzy, and the slightest offensive odor would send me gagging to the bathroom. On top of that I had 'Brain Buzzes' every couple of minutes. A Brain Buzz was essentially my brain trying to reboot itself without the medicine.

I was in pretty bad shape for about two weeks. I was pretty messed up. I am still having a few problems, mostly with mood swings, but I am overall feeling much better. The first thing I noticed was my appetite returned. Within 36 hours of stopping the medicine I was VERY hungry. I ate more in the first three days after I stopped the meds than I had in the previous three weeks. That is not an exaggeration. I would have thought that when I went to my doctor and had lost so much weight that she would have maybe considered that the Effexor was interfering with my appetite. Unfortunately, I think that since I had a different doctor give me the initial prescription she didn't think of it.

Just eating regularly has made me feel human again. It is almost weird to feel hungry again, but it is wonderful to actually want to eat instead of choking down every meal.

The other thing that I have noticed now that the Antidepressant Discontinuation Syndrome is gone is that I am in a better mood more of the time. I think the Effexor kept me from the low depression, but it also seems to have kept me from the good moods too. I feel happier as a rule off the meds than I did on them. The depressed moods are much worse of course, but as I said earlier, I am pretty good at working through those. I was still getting depressed on the meds, and I was actually considering asking about being put on a higher dose or another medicine in addition to the Effexor. I decided instead to try a more 'natural' approach instead of more chemicals.

The medical community doesn't call it Antidepressant Withdrawal Syndrome anymore. Apparently 'withdrawals' only happen with addictive drugs. Although I think I was pretty addicted to the Effexor, the actual definition of addiction puts it a little differently. Splitting hairs if you ask me.

So, overall, I am feeling so much better. I am dealing with deeper bouts of depression than I was, but my mood has mostly improved. I am eating well again, and as a result I have tons more energy. With all that energy I am actually getting my housework done, and that is making everyone happier! I'm still bursting into tears at sappy commercials, and I have to work harder to control my temper. Oh yeah, and I've been having really weird and vivid dreams. But even that stuff has gotten better every day.

We are planning a trip to Phoenix to visit my family next week. It is going to be so nice to interact with them without the fuzz of the medication in the way!

My Struggle

Okay, I'm going to get serious for a little while. I usually try to keep my blog here up-beat, but I think it's important to talk about struggles. If I'm going through this then other people are too, and maybe they want to read about it.

I am underweight. I'm not anorexic or bulimic, but I do have depression and anxiety issues. I also have Celiac Disease, which doesn't help things. When I get depressed, I don't eat. I know, I know, most people eat when they're upset. Well, I'm the opposite. I get an anxious stomach, and start feeling nauseous. When my stomach is upset I don't want to eat anything. Well, I'd been dealing with the anxiety for so long, that (according to my Doctor) I shut off my hunger trigger. Now, I actually forget to eat. I feed my kids, but then I get busy doing other things and forget to sit down and eat. I am under orders from my doctor to feed myself when I feed the kids, and I am really trying to stick to that.

I don't own a scale, so I don't know exactly how much I weigh, but in February I went in to the Doctor for some shoulder pain and when they weighed me I was 118 lbs. Which would be great, except that I am almost 5'9" tall. That puts my BMI (Body Mass Index)at 17.4. A normal weight person has a BMI of 18.5-24.9.

If someone finds out I'm underweight they'll usually tell me to eat more junk food or to 'carbo load'. Well, that's where the Celiac Disease complicates things. Celiac Disease is an intolerance to gluten, a protein found in wheat, barley, and rye. That means I can't have most processed foods. There are lots of great products out there that are gluten-free, and more are coming out every day. These tend to be prohibitively expensive. And really hard to find. I can bake my own goodies, but one of the most serious symptoms of my depression is that I just don't have the energy to. This can be a vicious cycle, as being underweight makes me tired too. Food = Energy.

Being underweight causes me all kinds of other problems too. I get sick a lot. I usually catch every bug going around. It's not fun. There's that vicious cycle again. If I'm sick, I don't feel like eating anything. If I don't eat, I won't gain weight or have the nutrients I need. If I stay underweight, I get sick. On and on...


So there's my problem. Every day I fight. I won't give up, I'm too stubborn for that. Some days are better than others, but everyday is a fight. I plan to blog about this in the future, so consider yourself warned!

Photo credit: Tafkabecky at Flickr