My Many Colored Days…

There is a Dr. Seuss book we like to read to our children…

It discusses feelings in comparison with colors, and weather, and animals… and helped explain the variety of EMOTIONS we can express.

Today is a grey dayMAD, and loud.  I growl at every cloud.

It started out happy PINK… actually I’m feeling very well this week, despite the craziness (and am SO thankful), but you’ll see how things turn a quick turn souuuuuuuuth this morning.

I’ve known from the beginning of my understanding celiac disease that the golden standard was the biopsy showing damage to your small intestine.  I knew I was already in trouble in March, for going off gluten earlier in the year as I was getting sicker… and then there was the fact that I was having to wait – almost 3 months for my biopsy to happen.  I tried to eat some gluten in there, knowing full well it probably didn’t help.  I couldn’t even eat a bite of bread.  I knew I couldn’t do the challenge without compromising my health even further.

With as sick as I had been – and the damage my whole system had shown for years –  I was fairly confident they would find something…  after all – 6-8 or 11-13 (depending on your source) samples is a lot of area to be covered.  Right?

Still, in the back of my mind… I knew others had multiple biopsies done, several years in a row showing negative for celiac (according to the golden standard).   Only to result in more symptoms, and more damage… and then finally…. that ‘golden’ answer.

Did I really want to go through THAT?

I thought, “what exactly is GOLDEN about this again?”

Then recently, I had been reading a Facebook page by the University of Chicago Celiac Disease Center, where a woman’s child had 11 biopsies, all which the GI said looked beautiful, and perfect.  However, the pathology report, which looks for the microscopic changes that cannot be seen with the scope – showed celiac disease.

This is why several biopsies are so important, as well as a pathologist skilled in looking for celiac disease.

IF you are going to go through the trouble to get an upper and lower GI done, you definitely are seeking real answers for the sake of your future.  If you’re super sick, make more noise than I did – and insist on getting in before waiting SO long!

So today, I was in the area of my gastrologist’s office… I thought I’d swing in and pick up my records, so I could see how many samples I had tested in April, and just to review what the pathology report stated specifically.  (My GI didn’t ever offer that information to me, and I was too out of sorts at my follow-up appointment to ask).  I just took the words he said – not excluding celiac, but not able to confirm it with that biopsy.

The receptionist  showed me the papers and explained that he had taken one sample from my small intestine.  Each vile holds ONE specimen.

Excuse me?

Yes…. you read that right – ONE.

ONE??

I calmly said that couldn’t be right, as I was being screened for celiac disease.

The receptionist took my records back and got the nurse, who then told me that he “must not have seen anything” and that’s why he only took one sample.

WHAT?

I calmly stated that isn’t how celiac is tested for – that multiple biopsies needed to be taken (usually 6-8, sometimes several more than that – but definitely more than 1!!).  Then I told her that since our appointment, my husband and I had genetic testing done, and indeed had the genes that predispose me to the possibility of celiac disease, and that I had gluten sensitivity.

I thank her for the records and left.

Then I bawled all of the way to the van, and sat in my van and cried…  and called my husband for some therapy.

What a disappointment. (to say the least)

WHY didn’t they take the necessary biopsies?  Why did I wait almost 3 months and then have to go through all of that prep, for no possibility to get the answers I needed??

Why didn’t he mention that at my appointment??  (It’s probably a good thing I didn’t know about this at the appointment…)

I felt my blood boiling.

Do we really need to question WHY this is under diagnosed if THIS type of “testing” is what is going on for some people?  My husband wondered if without a positive celiac panel blood test, that perhaps insurance only allows one biopsy is approved.  (why would this not surprise me??  But, it was never mentioned.) 

I would have PAID out-of-pocket for those other biopsies at that point…

If you are going to the length of getting a biopsy done for celiac disease – please double and triple check that your gastrologist will be taking PLENTY of samples for the pathologist to work with.  I also found out, the pathologist used, was also local, and part of the group that works with this gastrologist group.  In the area we live in, and with the “one sample” my GI took – I’m going to guess, they don’t see a whole lot of celiac, because they’re not testing correctly.

I’ve read of people sending their biopsies to other places for a second opinion with a specialist who knows what they’re looking for.  If I had more to work with – I was going to request that after reading my report…  with as much trouble as I still have – there is no doubt in my mind damage could have been found, my gut isn’t healed.

Do you see why I didn’t subject my children to any of this type of mess?  I would have been that much sicker had this same thing happened to my child.

Goodness sakes.

I came here to tell you – because I want to encourage others, TO SPEAK UP – so the same thing doesn’t happen to them.

I can only imagine how I would have felt had this been my child. 

God will get my heart through this…  But I was pretty sad today.  Tomorrow is a new day, and I need to focus on the right path that we’re on, and ignore the idea I’ll ever have that right test without risking my health.  In the words of Dr. Suess, “and I go back to being me.”

Special thanks to my husband for letting me nap tonight during while we watched the Olympics,  I needed that before my workout!

“The Lord is close to the brokenhearted; He rescues those whose spirits are crushed.”

Psalm 34:18

Posted on August 3, 2012, in Celiac/Gluten Sensitivity, Our Struggles, Truth and tagged , , , , . Bookmark the permalink. 4 Comments.

  1. THAT is unbelievable! I’m so sorry! Maybe that doctor needs to look at some of those current medical journals about Celiac/gluten sensitivity. SERIOUSLY! VERY disappointing :(.

  2. So sorry Sara, ((HUGS)) to you! Thanks for being so transparent and sharing your success’ as well as your struggles! Love ya 🙂

  3. Thanks ladies. Definitely, very disappointing… But, I know it’s not without reason. God has a plan bigger than my struggles and hurt feelings. I’ve read 40% of biopsies for celiac are done incorrectly. The doctors definitely need more information.

  4. Vickie Hashman Stewart

    That is simply NOT responsible medicine . I know how sick you were and this
    makes their “head case” treatment even more disgusting. I am thankful my onocoligist didn’t hesitate and was more than willing to go for the DNA test for celiac…of course, I had to get cancer first. 😦

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