Daily Archives: April 21, 2012

Meeting Myself Face-to-Face [PART FOUR]

The bookstore was a disappointment.  While I found some great cookbooks on gluten-free/vegan, I found nothing on celiac disease.

Up and down the aisles I went.  I really started to feel discouraged.  Maybe celiac disease was SO rare, that there was NO WAY I had it.

I bought a few cookbooks, and a book on food allergies, and off I went to the library.

The library proved to be much more helpful.  I got plenty of great books and I returned home to bury myself in reading during any free moment I had.

Hands down, this book was the most helpful in realizing this described everything I was feeling.

The more I read, the more I KNEW this is what I had.  But I also realized, I probably wasn’t going to be testing positive… because I was simply not eating enough gluten.

After a follow-up appointment to my Dr for one of my children, he inquired about my health and I told him what was going on.  I asked again about the celiac panel, and he then agreed we could try that.

If only I would have known to start here BEFORE making any changes.

It was negative.

Although I wasn’t surprised, as only 15% of people diagnosed, get a positive with a blood test.  It was still a few weeks to my GI appointment at this point.  I figured I could keep a bit of gluten in my diet until my test and perhaps they could do a biopsy and it would show up.

The Dr. then ordered a CT scan.   After previously denying that test out of frustration of “tests” with no answers…  I consented to the test.  Another fairly simple test.  Fast, drink some citrus/glue-tasting stuff, [actually a whole LOT of that disgusting stuff] and with some contrast dye from an IV, they took pictures to see what was going on.  Fifteen minutes and done.  Easy.

After that test, I was reading about something called a “gluten challenge” – where a patient who has gone off of gluten must eat 4-6 pieces of bread a day for 6 weeks, to ensure there is enough to cause a reaction.  That night, I took 2 bites of a multigrain bread for dinner, and the reactions almost took me to the ER.  I bloated within 15 minutes, the pain, cramping, head issues went on for about 5 hours.  The next day I felt like I had been run over by a semi.

It was VERY difficult to eat gluten after going gluten-free.  After that day, I knew I couldn’t do the gluten challenge.  I started realizing all of the hidden places gluten liked to hang out, and WHY it wasn’t obvious to me sooner as to what was making me sick.  Not only that,  apparently, after you continue cutting more gluten out, your body reacts stronger when you try to add it back in.  I ate some salsa a day later, and on day 2 realized it was the salsa making me sick – yes, after I had ingested it TWICE.  Diarrhea plagued me after that, all Easter weekend.

That Monday, the Dr’s office told me that the CT scan was normal.  Apparently I just needed to take some laxative.  I let the nurse know my body already took care of that.  I’m pretty sure they thought I was a hypochondriac.  Ironic, since I did feel so irritable on gluten I thought I might be going crazy!

The more I read however, everything said …. the BIGGEST MISTAKE people with celiac disease or a gluten intolerance can do, is to go OFF gluten before being tested.  Personally, I don’t see how that’s possible (to stay on gluten while awaiting months of testing) – if you were like me, and realized what was going on.  The first thing you want to do – is to feel well so you STOP eating those things that make you sick, or stop eating period.  The LAST THING you want to do is to continue poisoning your body… and withering away.  I know in my heart that God blessed me with enough information to protect me from things reaching that level.  I don’t know WHY, but it’s part of the reason I feel led to share my story.

I tried to keep some gluten in my system the week before my GI test, but I knew in my heart it probably wouldn’t help.  I just wanted to try – anything to get some solid answers.

I went into the GI appointment [yes, I skipped the prep part of the story to spare you – it’s horrid, but it’s essential] relieved {literally}, to be at the end of my journey, and I awaited the answers with hope.

This is me, right before we left for my test. I actually felt really good this day. Amazing – all toxic gluten – GONE from my system!

Following my appointment, and feeling well, I tried again to tolerate some comfort foods – but after two days of severe gluten reactions, God gave me the peace I needed, to know in my heart the answer – before I had the results to the test.  I knew it would be a long shot for the results to show enough damage.  I was basically eating gluten light before February with cheese being my number one source of gluten.  Then I ate gluten-free to gluten lite after the Dr. directed me to get rid of lactose…  and I couldn’t eat the amount needed to show the test otherwise.  Not only I couldn’t, I wouldn’t.  I was sick of being sick – and looking forward to feeling healthy.

So Thursday, April 19th, I went back to gluten-free – for GOOD.  I will be meeting with my family Dr. to seek genetic testing – for the sake of our children, and I meet with the GI Dr also at the end of next month.  I have no regrets, or doubts of my diagnosis.  The past years, as I’ve been trying my hardest to eat well, exercise and feel good – my body has been slowly trying to tell me that it’s not getting the vitamins it needs, because it hasn’t been able to absorb them!  Mostly I’m thankful to know now, vs. when I have intestinal cancer.  Sadly, 27% of people who have symptoms and test negative, continue searching for what is making them sick – never retest, and they wind up being positive for celiacs disease when it’s too late.

I always had indented “spoon-like” nails when not pregnant. I just thought I had bad nails. Another sign of a vitamin deficiency that celiacs have.

I’m on day 3, and feeling great.  My swelling has gone down,  no belly aches, bloating or cramping and NO REGRETS. 🙂  I’m more clear-headed than I’ve felt in months – no more forgetting how to speak, as if I were having a stroke.  It’s only going to get better from here!

Here’s to being healthier for HIM!  (and for His peace in times of confusion!)  It’s a strange feeling, but I truly feel like God is allowing me to understanding just how He created me and I’m so thankful.  When I look in the mirror, I finally understand just how this body works!  Thank you God for helping me meet myself face-to-face and for allowing my body to be healthy enough to carry 8 healthy children. [Amazing how we are designed in such a way that would be possible – yes?]

“So whether you eat or drink or whatever you do, do it all for the glory of God.”  1 Cor. 10:31

Meeting Myself Face-to-Face [PART THREE]

I love learning about new things to cook for my family.  What is your favorite healthy cookbook?

As I made my appointment for the following week, I continued cutting out more and more lactose containing foods.

My weekly half – buttermilk donut… gone!  Seems odd that would make a difference.  After all, HOW many months did I eat half of a donut on daily basis?

I decided I’d try a few bites of their sourdough one instead.

REALLY bad idea.  After feeling flu-ish and cramping all through church that Sunday, my husband suggested a quick trip to get our weekly things from Wal-mart.  I thought I might pass out in the store.  Hot flashes, and cold sweats.  I took my temperature when we returned home.  Nothing.

I ran to the bathroom and proceeded to throw up the entire contents of my stomach.  JOY.

I passed out on the bed from exhaustion, not eating lunch, and slept for a good 2 hours.  I woke up feeling much better, but with a headache.  This wasn’t the flu.  My body was rejecting food, and carbs seemed to be clogging up my instestines.  I just didn’t know what to think.

Wednesday couldn’t get here soon enough.  Day after day – I would eat, feel uncomfortable and not be able to sit for hours after eating.  The pain was crazy, my joints hurt from swelling and my mind was in chronic hazy-fog.  I would wake up with fingers and feet swollen and hurting.  I remembered these symptoms now and again, but it was becoming a frequent occurence and worsening daily.

WHAT IN THE WORLD COULD BE GOING ON?

Finally, I got to talk to my Dr.

After listening to my recent ailments, and my commentary that I’ve always struggled with “IBS” symptoms, I asked about possibly celiac disease, or crohns.  He assured me it wasn’t celiacs, stating how rare it was, and the test was expensive – but he did want to rule out crohns or any other stomach bacteria that can cause similar issues.  While pressing around my stomach, he realized how tender my left side was – especially under my ribs about where my stomach and small intestine lie.

“We need to check out your gall bladder,” he stated.  “When people lose a lot of weight, that’s the first organ to give people problems.”

So although I didn’t have any pain where my gall bladder was (on the right side, mine was all on the left), he thought it was worth a look.  We scheduled an abdominal sonogram, and a full blood work up to check my thryoid, cholesterol, and wbc.  His office scheduled an upper and lower GI for shortly after mid-April – a month and a half away.

The blood test showed nothing alarming.  In fact, I looked in perfect health.

The abdominal scan results came back normal also.  That was March 5th.

Next the Dr. ordered a HIDA test for March 15th.  It’s a fairly easy test that just requires you not eat a few hours before, and you must lie still on your back for about 2 hours.  They run a solution through an IV, to check the function of your gall bladder.  Everything looked normal, no blockages or anything to report.

The pain intensified and after another long week of worsening symptoms, losing weight and headaches from not enough calories…  I was losing the desire to want to eat at all.  It was my turn to take our daughter out to breakfast Friday morning, so I did.  I enjoy a waffle (no butter), a few eggs and bacon…

On the way home my foggy brain started feeling like I might be having a stroke.  I kept taking deep breaths and trying not to panic, but something WASN’T right.  The worsening vertigo, and my vision issues were throwing me for a loop.  Maybe I was just tired.  I was feeling tired a lot, despite plenty of rest, water and good nutrition.

I continued exercising – just for shorter periods, getting my weights in…. and making sure I wasn’t over doing it with my decrease in calories.  I didn’t want to just feel sick – I was going to fight to feel well again. GOD, please give me the strength!

By March 19th I hit 121 lbs, and I just stopped all carbs.  I tied almost every connection of feeling very ill to meals that involved any type of bread-like substance. I decided I needed to figure out how to get nutrition in me through out the day – and I planned out separate meals from my family that included no carbs at all.  I felt better… sometimes – but still not right.

Several people mentioned to write down what I was eating… and I tried that.  I never could seem to find a connection that “fit” – as to why I would feel better or worse.  It just seemed like I always felt bad, and some days I felt REALLY bad.

I figured if I could at least STOP losing weight… I would be ok.  I needed to function for my family, so if that meant green smoothies with almond milk for lunch, and plain eggs for breakfast – I could get through.  There had to be an answer somewhere!

It was about this time that my friend mentioned celiacs to me again.  I ignorantly assured her it wasn’t that.  After all, I KNEW someone who had celiacs.  She was really sick to the point of being hospitalized… I wasn’t having chronic diarrhea all the time.  In fact, if I wasn’t under stress, I was swinging the other way.  A recent client also had a daughter with celiacs – she stopped eating, and my friend’s son had celiacs, no GI symptoms but during puberty he just didn’t follow the growth chart.  Nope, it definitely wasn’t celiacs.

Then I goggled celiac diease…

WOW.

The symptoms were endless, and many of them sounded oh TOO familiar.

–         Foggy mind / vertigo / floor moving feeling

–         Leg cramps/foot Charlie horse where toes feel uncontrollably stuck

–         Feet/legs falling asleep often

–         Tingling throat, like sore – when not

–         Severe bloating (as if I were 5 months pregnant)

–         Diarrhea/constipation (despite lots of water/exercise?) Always the two extremes.

–         Tar-like stools

–         Gas – malodorous

–         Swelling of fingers/ feet when not eating sodium filled foods

–         Stomach cramps, pain – left side – starting at under ribs, sometimes entire left side.

–         Lump-like area when bloating is really hard – left side.

–         joint pain

–         mouth sores

God was teaching me patience.  My GI appointment was still a LONG way away.  Maybe I should get some books on the subject and read up, as well as grab some information on what to cook books I need that can keep me from losing more weight.  Of to the book store and library I went!

[to be continued…]

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  Matthew 6:34

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