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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

WHY?? The Gluten-Sensitivity Explosion

I open up my mailbox this week, and what do I pull out? My new “Bottom Line Health” magazine. It includes wellness strategies from the world’s leading medical experts.

The front page article was …. “The Silent Cause of Stomach Trouble…” (As many as 20 million Americans are suffering unnecessarily) by Alessio Fasano, MD.

The article went on to explain that an international panel of experts are talking about non-celiac gluten sensitivity issues. Praise God! They shared how doctors, for years, have insisted that symptoms were imaginary… and how they pushed patients to get psychiatric help.

SERIOUSLY?

Yes. Seriously.

But, I can see how things go down that path after experiencing a similar response first hand.

Even this “most recent” article seemed to be months/years behind in not having answers how people can get tested for gluten sensitivity issues.

How about GENE testing to ENSURE you don’t have a gluten sensitivity gene, or a celiac gene – to rule out the permanent damage and chronic inflammation factor?

The book, “Healthier Without Wheat”, shares the importance of being gluten-free for even non-celiac gluten intolerance. Stories are shared from parents who weren’t told that even if a test comes back negative to celiac initially, and yet the genes are THERE – continued exposure will increase the changes to triggering celiac and other major diseases, like cancer. Doesn’t it make sense to do gene testing right off the bat so a person can know if their geno-type?

The bottom line is, if the genetics are there – then you shouldn’t be eating gluten… otherwise, you’re just increasing your chances of activating the autoimmune disease, or allowing gluten to destroy your body in a whole host of other major ways. It’s not a matter of IF it will cause problems… it’s a matter of WHEN.

So, you might be wondering WHY is this all coming to a head for so many people right now? Why is a disease I’ve never heard about (Celiac) and things like gluten sensitivity – everywhere all of a sudden, and why are diets like Paleo and Vegetarian talked about SO much. Is it because everyone is on a health kick? Is it a fad, like some suggest, to just lose weight? Or are we putting the pieces together of the REASONS of rising health care nightmare in our country and we’re making lifestyle choices to avoid what a majority of people are experiencing?

Excess of chemically engineered food for convenience pushed through the FDA + lack of study on nutrition in the medical field + poor diet = a HUGE role in this health mess for all of us.

Many people interested in nutrition have seen the typical documentaries on our food sources… Hungry for Change, Fat, Sick and Nearly Dead, Fresh, Forks Over Knives, The Engine 2 Rescue, Supersize Me… the list goes on an on. (If you don’t have a Netflix subscription – you could be educated for hours on what is going on in our food industry, and it can be pretty shocking if you’re in the dark.) More importantly – you can begin to evaluate what those options are doing to our society as a whole, or within your own family… and decide what changes need to be made for the future of your health.

*A recent research study by Joseph Murray, M.D. professor of medicine at the Mayo Clinic in Rochester, MN, and colleagues shows a shift of more celiac disease in Europe and the US than just a few generations ago. In fact, it’s 4x more likely than a half a century ago. Here is how he explained what is going on, “Of course human genetics will change in response to the environment, but that change is extremely slow. It’s far more probable that the increase is due to an environmental change, and the most likely factor is a change involving the grain in our diets,” Murray said. “Consumption of wheat has increased steadily over the past 50 years, but is still less than it was a century ago, so the issue is not simple consumption.”; Murray noted. “It more likely involves the wheat itself, which has undergone extensive hybridization as a crop and undergoes dramatic changes during processing that involves oxidizers, new methods of yeasting, and other chemical processes. We have no idea what effect these changes may have on the immune system.”

Fantastic. “No idea what effect….” Have you ever felt like a test rat?

The other environmental change has to do with hygiene changes. Murray’s theory on that talks about our immune systems being exposed to the right bacteria to develop properly, but because of such “clean” environments, children are more susceptible to immune disorders and allergic disease. “There are no doubt multiple environmental factors that interact to trigger the onset in people who are genetically predisposed,” Murray said. “The increasing prevalence makes it more important that health care providers and patients are alert to the possibility of celiac disease.”

** and gluten intolerance.

Fabulous. I’m a neat-nick… and a germo-phobe. One more strike against my kids for the environmental factor trigger! *sigh* But the issues regardng our chemically engineered food being such an issue makes COMPLETE sense for an increase in cases!

What could medical doctors glean from this? Genetic testing needs to be an option when the “simple” antibody blood test doesn’t show anything and the sometimes irrelevant upper GI biopsy doesn’t show anything either and the symptoms are all there. As a patient, please don’t give up if you are struggling for answers. If you’re suffering digestively in any way, OR with neuropathy symptoms, thyroid issues, asthma or unexplained rashes and ailments… keep on your doctor or do the tests needed OR if that doesn’t work – get an at home test from Enterolab.com. You shouldn’t believe everything thing you see/hear on the internet… but I’m a HUGE believer in self-educating. Keep reading, and putting the pieces together so you and YOUR family can be HEALTHY FOR HIM.

** Quoted information from Murray’s studies were found in the downloadable book “21st Century Medical Sourcebook, Celiac Disease, Gluten Intolerance – Clinical Data and Practical Information.” that was updated in March of 2012.

Here it is! My 20th loaf of bread, and perhaps my tallest one yet! 🙂 It needed a bit more Xanthum Gum – but the kids loved the taste!

“You also, be patient. Establish your hearts, for the coming of the Lord is at hand.”

James 5:8

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

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