How Celiac Disease Gets Missed

After getting CC last time, I decided to find a gluten-free/lactose free source to help me with my mouth sores caused by gluten. Many people with celiac disease deal with this… and it’s NOT fun. Mine stay for weeks – and make me not want to eat or OD on Motrin (which only masks the problem. These work AWESOME and feel so soothing! I got them at Vitacost.com

We returned from our trip to the University of Chicago Celiac Center this week.  Before, I go further – let me be sure to tell you, I am glad we went.

Very thankful {for reasons I’ll continue to share with you in the coming weeks}.

But, for those of you who can’t make a trip to a specialist, or perhaps are even currently struggling with a specialist and in the battle of getting info for yourself, or your children – please know, you are NOT alone.

Doctors are people too, they’re not God.  Practicing medicine is not an exact science, and tests are not perfect either.

People who are deal with gluten sensitivity might be among the largest group of frustrated folks out there – and here is why:

The problems are WIDE, and the tests to figure out what is going on – don’t exist.

The tests that DO exist are not doing a enough good job, and the doctors who insist that the tests are doing well a majority of the time – are NOT listening to the people who are still struggling with the issues at hand.

And that’s the bottom line.

People are doing basic panels for celiac, and despite other family members having symptoms of celiac disease – they are being TURNED AWAY from the golden standard biopsy of a celiac diagnosis.

That’s right, the doctor won’t even test to see if they might have celiac too because they think a negative blood test is enough to cross that off of the list.

So what if EVERYONE in your family has low IgA?  Likes ours.

If the patient is blessed enough to get a biopsy – like myself, OFTEN TIMES they must wait several months, and they are tested incorrectly.  8 – 12 samples are needed – in multiple areas of your duodenum… ONE sample was taken from my upper. ONE SAMPLE.  No notations were made that I was negative for celiac… meaning, I don’t even KNOW if the pathologist was specifically looking for changes in my villi.  Only the GI specialist said everything looked good.  Um, unless your villi are completely flattened – you can’t SEE celiac disease.

The statistics SAY that only 1%-2% of those with celiac are being missed from the basic IgA blood panel showing negative, yet having a positive biopsy…  Yet, I talk to person after person – like myself.

Want to know what I think of there statistics?

This leads many people to do the UNTHINKABLE…

They do what they’re told NOT to do.

They do what any common sense person would do…

They STOP eating gluten…

Because no one is listening to all of their symptoms and their health history, and ignoring the flawed test – and all of the signs… and guess what?

They feel better.

Their gut heals, their other food allergies related to their leaky gut … go away…  their rashes, brain fog, and chronic sinus issues fade away…

But without that diagnosis – they have no help on follow up.  What about the damage done that has been missed for years?

We took our children to Chicago, not because we assumed they all had full blown celiac disease YET, but because we knew they were a learning hospital, and they were striving to educate (those in health care, and otherwise) about celiac disease and gluten sensitivity.  BOTH of which we KNEW were dealing with in a major way…

Since our symptoms were so wide-spread, and varied – we thought they would appreciate seeing us as a test group…. and we just knew they would help us get an understanding of where to go from here.

However… we learned quickly that for the children that didn’t have typical GI issues that THEY related to celiac… but rather neuropathy, respiratory issues, constipation, and rashes… {CLEARLY caused by gluten, and eliminated when we got rid of gluten…}  They weren’t as concerned about waiting through puberty to do a gluten challenge with them, and some they really questioned why we took them off gluten altogether despite the obvious positive changes in growth and development?

Confusing?

Indeed.

When the doctor suggested I put my child {who has finally had formed stools, for the first few weeks out of the past 5 years} BACK on gluten to “test” him in a few months  – I thought he might be crazy.

I smiled and nodded… and thought – NO WAY – NO HOW.  NO thank you.

I even asked one child (who has struggled with neuropathy, major rashes and chronic stomach aches), in front of the doctor – “would you eat gluten I paid you?”

“NO, NEVER!” was her reply.

She’s not alone… all of my kids feel that way, for different reasons.

It’s no wonder the stats are some 97% of people have celiac and are NOT diagnosed.

My sister-in-law stated my niece feels the same way.  My own mother refused the process altogether after her genetic test…

WHY?

Because they knew what we know… and THAT is enough.  They also know the type of issues most people run into to get answers, and it’s not worth the fight to them – when the outcome is the same.

STOP CONSUMING. GLUTEN.

Sure, knowing whether it’s celiac disease IS important.  We get that.  But it seems that there are only a select few cases (perhaps that other 3% of those who are diagnosed) where the testing is by the book – and easy for the patient to get answers.

We learned quickly that putting the pieces together with celiac and gluten sensitivity isn’t “one doctor fits all” like we had hoped.  With as wide-spread as the kid’s symptoms were, the doctors were missing the point that we were watching the kids get sicker as they headed into puberty, and we weren’t going to just sit back and ignore their cries, complaints and struggles… when we knew what was causing all of it.

The bottom line, for us – was that: gluten is a poison in our family – our sensitivities are obvious, and wide-spread, and were sick on trace amount of gluten – so CC was a real issue outside of our home.   We can track issues back to when they were babies, and see how long this has been going on.

It’s obvious we need to be G-FREE for life.

Of course it doesn’t solve everything, but it eliminates what we know was going on previously… and that’s further along than we were before.

The Dr. said himself – there is NO nutrition in gluten, the kids aren’t going to be missing anything from taking it out of their diets…

It may take a bit for the medical world to get turned around here with nutritional answers for people hurting… but at the rate that I meet and talk with people who have food allergies and health issues tied to major gluten sensitivities – I’m guessing that day is coming sooner vs. later.

So instead of buying creams that don’t work on their skin, depression medications, anxiety, ADHD or asthma medications, OR antibiotics to get rid of the GLU-ten in their sinuses and chests causing infections on a regular basis…

We’ll eat to live… so ALL of us can be healthy for Him.

“If any of you lacks wisdom, you should ask God,

who gives generously to all without finding fault, and it will be given to you.

But when you ask, you must believe and not doubt,

because the one who doubts is like a wave of the sea,

blown and tossed by the wind.

That person should not expect to receive anything from the Lord.

Such a person is double-minded and unstable in all they do.”

James 1:5-7

Posted on October 1, 2012, in Celiac/Gluten Sensitivity, Our Struggles and tagged , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. Thank you for the information!

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