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

Posted on April 21, 2012, in Celiac/Gluten Sensitivity, Label Reading, Our Struggles, Truth and tagged , , , , , , , , , , , , , . Bookmark the permalink. 4 Comments.

  1. Hats off to you Sara! You have been a wonderful witness as you have walked through this valley in life. Praise God that you are on the path to wellness finally 🙂

  2. I’m so thankful God used you to reach out to me Steph. You’re a big reason why I didn’t go into the hospital. Very thankful to God for you.

  3. Blushing….I just made a suggestion! You were the one leaning on God for continued strength all the while educating yourself to a new and healthier you 🙂

  4. Well out of my top 100 guesses, celiac disease was not really on my original list. Thank you so much!!

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