Update-2/5-Celiac Disease

Quick update…we are finally getting settled back into a routine after being gone for most of Jan. It is good to be back, in my own kitchen again and not living out of the tubs that we travel with when we pack up all our pots, pans, etc! It was challenging for Ashley to get back into brain training again, she had some rough days. Soon after our return, she had no memory of the trip. We were telling her about her adventures skiing, boogie boarding at the beach, Sea World, etc…and it didn’t trigger anything. I’m not surprised because this is consistent with her behavior since waking up in June, I guess I was just hoping for a glimpse of something. BUT, I am super encouraged by the improvement we have seen in her writing and reading since starting brain training in early Jan. For most of the fall, I could barely read what she was trying to write and it was very hard and time consuming for her to even write one word. She’s still not writing a significant amount, but it has gotten easier for her and people can understand it now! Concerning her reading, she has finished Sing Spell Read and Write and is now able to read more advanced books. She’s not up to grade level yet, but I do see significant improvement in her reading ability! I am soo grateful to God for the miraculous ways He is working in her life…I’m just soo ready to see glimpses of her memory returning…but I know that God is in control and that we will continue to see His plan unfold!

For those of you who have been around me lately, you know that I love talking about health/nutrition and sharing with others what we have learned. Honestly, it is therapeutic, and incredibly redemptive and healing to see how God is using Ashley’s trial to help others. I truly believe that this is just the beginning. On that note, I have had 2 people tell me since Christmas that they have children who didn’t really have any major GI issues, but just weren’t growing as they should. Both of these children were diagnosed with Celiac as a result. I have begun reading more on Celiac and am amazed at how large the population of undiagnosed cases are. I am also very serious when I speak with people who don’t take going gluten free seriously for themselves or their children. It breaks my heart when I read about the cases of early death, colon cancer, infertility, etc. as a result of not strictly adhering to a gluten free diet…and sometimes going gluten free isn’t enough…thus what led us to the SCD diet that we are on. You will find one such article below. Perhaps it will help you understand how serious this decision is and lead you to support those in your life that it might effect…it is not easy.

 

On June 10^th 2005 my mom died from Cancer at the age of 52… and I miss her every single day.

I was devastated.

It tore me apart.

It didn’t make sense.

It wasn’t fair.

How could this happen?

But looking back, the signs leading up to her cancer revealed a pattern:

• Lifelong “nervous stomach” (diarrhea, gas, and bloating)
• Fertility problems
• Graves’ disease
• Endometriosis
• Migraines
• Fatigue
• Anxiety
• Depression
• Frequent illness
• Gallbladder cancer
• Bile duct cancer
• Liver cancer

And my own Celiac Disease diagnosis in 2007 affirmed my suspicions.

Lifelong untreated Celiac Disease killed my mom…

Celiac Disease is an exploding epidemic

The latest research estimates 1% of the western population has Celiac Disease (1 in every 133 people)^[1] with nearly 3 million people suffering in the United States. Lot’s A LOT of people… but what’s worse is the University of Chicago Celiac Disease Center estimates 97% of those with Celiac Disease remain undiagnosed.

So why are so many people unaware they have Celiac Disease?

The diagnosis itself can be expensive, time-consuming, and misunderstood.    The “gold standard” Celiac diagnosis looks for a positive antibody blood test confirmed by an intestinal biopsy.  The biopsy is typically ordered by a Gastroenterologist and gathered in a hospital setting during a procedure called an Endoscopy, costing anywhere from $2,000 – $5,000.  For some people, that’s just not an option.

It isn’t necessarily a lack of tests that’s the problem… it’s the lack of doing tests in the first place.

But I’ll get to that in a moment…

I used to think the Celiac Disease epidemic was there all along… that this meteoritic rise in the disease was the result of new medical technology and the growing awareness in mainstream media.

But I was wrong… well sort of.

We are getting better at finding it… but recent studies provide solid evidence that a Celiac Disease “explosion” is happening because more people are developing the disease, not just because of better testing.  In fact, one study performed at the Mayo Clinic suggests the incidence of Celiac Disease in men has increased 4X since 1948^[2]!

If that’s not enough to convince you that there’s a tidal wave of Celiac Disease headed for us, let’s follow the money.  Private Industry has taken notice of the rising population of gluten-free dieters (not all of which have Celiac Disease).  Look at this data:

Gluten-free foods and beverages, once considered specialty items, had a compound annual growth rate of 30% in the U.S. between 2006 and 2010… $2.64 billion in total sales in 2010^[3]. 

New reports estimate it will be a $5.5 Billion market by 2012^[4]!

Corporations wouldn’t be pumping millions of dollars into a market if they thought it could shrink or slow down anytime soon.  Not only have that, but pharmaceutical companies are racing to develop several drug treatments for Celiac Disease.

The worst part of this story isn’t just the growing epidemic…

You Could Have Celiac Disease and Not Even Know It

Celiac Disease is an autoimmune condition of the gastrointestinal system triggered by gluten, the protein found in wheat.  When people with Celiac Disease are exposed to Gluten it stimulates the immune system to attack and damage the intestinal lining, waging war against its own intestinal tissue (villi).  The challenge with Gluten is that it’s virtually ubiquitous in today’s world, found in just about everything… from cereal to lipstick.

And because Gluten is in just about everything we eat, drink, and bath with – it can be tough to avoid.  We could conceivably consume Gluten in every aspect of our daily lives.

Lately, public awareness has been growing for the digestive symptoms related to Celiac Disease like diarrhea, gas, cramping, and bloating.  It’s a good sign, but the problem lies in the fact that only ½ the people with Celiac Disease actually have significant diarrhea as the primary symptom^[5].

Instead, the disease has been linked to over 300 different symptoms, many of them subtle and seemingly unrelated to digestive problems.  Other symptoms include fatigue, unexplained weight loss, depression, anxiety, joint pain, seizures, muscle cramps and many more.

That’s the problem with undiagnosed Celiac Disease… 

It’s not a lack of available testing … but a lack of recognizing the need to test for it in the first place.  The disease is like a chameleon, sometimes manifesting into symptoms that don’t exactly scream out, “Hey Doc, I’m Celiac Disease.”  Couple that with the average family physician 10-20 years out of medical school that’s not current on the latest Celiac Disease research and it’s a losing equation for everyone involved.

That’s what my story was like.  After losing my mom in 2005 I started having diarrhea more and more every day… sometimes 10 or more gut-wrenching sessions.  I was losing weight and malnourished.  And even though I had some “classic” Celiac Disease symptoms, I had a history of depression, anxiety, “nervous stomach”, chronic fatigue, and low iron.

Over the next year, I continued to go to the doctor with worsening diarrhea and received a different diagnosis each visit.  First I got sent home with Fiber, then drugs for IBS, and then a colonoscopy looking for Ulcerative Colitis or Crohn’s Disease.  It was only because of my emotional pleas the gastroenterologist agreed to take a small intestinal biopsy for Celiac Disease.

The bottom line is this: you could have Celiac Disease and not even know it… and your Doctor might not realize it either.

What Happens in Untreated Celiac Disease?

If Celiac Disease goes untreated… it’s not good.  Here’s just a few of the increased risk factors from various studies:

• 30% increased risk for GI cancer^[6]
• 40X increased risk for non-Hodgkin’s lymphoma of the small intestine^[7]
• 77X increased risk for lymphoma^[8]

Then there’s the percentage of people with Celiac Disease that have the following associated conditions that aren’t going to go away if the Celiac Disease isn’t treated^[9]…

• Anemia (3-6%)
• Arthritis (20%)
• Ataxia (40%)
• Cows Milk Intolerance (24%)
• Dermatitis (5%)
• Diabetes-Type 1 (12%)
• Irritable Bowel Syndrome (20%)
• Liver Disease (42%)
• Migraine Headaches (4%)
• Nerve Disease and/or Peripheral Neuropathy (51%)
• Obesity (30-40%)
• Osteoporosis (4.5%)
• Low Bone Density (70%)
• Pancreatic & Thyroid Disorders (5-14%)

The important message here is this: it’s a good idea to rule out Celiac Disease if you have any of these problems… and it’s a REALLY good idea to treat Celiac Disease if you do get diagnosed.

A diagnosis isn’t the end of the world, as you can see it can very easily save your life.

The Gluten-Free Diet will save your life (maybe)…

It’s widely accepted that the first step in treating Celiac Disease is removing gluten from the diet with 100% strictness.  In fact, this is the treatment plan copied right from the National Library of Medicine and typical of most doctor-patient conversations after a diagnosis^[10]:

Celiac disease cannot be cured. However, your symptoms will go away and the villi in the lining of the intestines will heal if you follow a lifelong gluten-free diet. Do not eat foods, beverages, and medications that contain wheat, barley, rye, and possibly oats.

You must read food and medication labels carefully to look for hidden sources of these grains and ingredients related to them. Because wheat and barley grains are common in the American diet, sticking with this diet is challenging. With education and planning, you will heal.

While removing gluten exposure is critical to the treatment of the disease… it isn’t THE only treatment.  It’s just part of it.  The danger lies in the promise that people with Celiac Disease who follow a strict Gluten-Free diet for life will fully heal.

I followed a strict Gluten-Free diet for two years with only minor symptom-relief.  And it turns out I’m not alone….

The Gluten Free Diet Isn’t Enough…

New research suggests that the small intestines of up to 60% of adults never completely heal from Celiac Disease despite following a gluten free diet^[11].

In one study of 241 Celiac Patients – small intestine mucosal recovery 2 years after following a Gluten-Free diet was 34% and 5 years later was only 66%^[12].

The authors stated :

“Mucosal recovery was absent in a substantial portion of adults with CD after treatment with a GFD.”

Another study of 465 Celiac patients after 16-months on a Gluten-Free Diet found that:

“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD”^[13]

So in other words, many of these people followed a gluten free diet for years without completely healing the intestinal damage caused by the disease.  If the intestinal damage never heals it is no wonder Celiac Disease patients are more likely to experience cancer or some other debilitating disease.

That’s incredibly depressing for people with Celiac Disease… especially if their Celiac Disease diagnosis went anything like mine:

I’d finally convinced my Gastroenterologist to order an endoscopy after years of horrible diarrhea, fatigue, and depression.  A few weeks after the procedure I got a pamphlet in the mail from her called “Living Gluten Free” with a hand-written note that said:

“ – tests showed you have Celiac Disease.  Follow a Gluten-Free Diet and you’ll be just fine.”

Ummm, what?  What’s Celiac Disease and what’s gluten?!? How could gluten be causing all these problems in my life?  I’ll really be just fine if I change my diet?

I can’t help but wonder how many people around the world get the same prescription I did and feel desperate when the Gluten-Free Diet doesn’t work.

But here’s what I do know: when I followed a strict Gluten-Free diet for 2 years believing I would be “just fine” and STILL had diarrhea 5-10 times a day, I came face-to-face with insanity.

In fact, things got a little scary when I was absolutely convinced I was getting “gluten contamination” from everything (like the dishwasher, cooking pans, silverware, water, air, kissing, breathing, whatever).  It reached the lowest point when I thought I couldn’t eat anywhere but my own kitchen without getting “glutened.”  But the reality is: it wasn’t gluten contamination at all.

The gluten free diet wasn’t working for me…

How to Tell if The Gluten Free Diet Isn’t working for You

If you have Celiac Disease and you’re following a Gluten-Free diet… but still experiencing any of these symptoms, the Gluten-Free Diet isn’t working for you either.

(Remember: Celiac Disease symptoms may or may not occur in the digestive system).

• Recurring bloating and cramping
• Chronic or recurrent diarrhea
• Constipation
• Nausea
• Liver and biliary tract disorders
• Weight loss
• Pale, foul-smelling stool
• Iron-deficiency anemia unresponsive to iron therapy
• Fatigue
• Arthralgia
• Tingling numbness in the legs
• Sores inside the mouth
• Skin rashes/acne
• Tooth discoloration or loss of enamel
• Unexplained infertility or recurrent miscarriage
• Osteopenia or osteoporosis
• Anxiety or Depression

Each of these symptoms could be related to Celiac Disease even if you’re following a strict Gluten-Free diet.  In many cases, simply removing gluten can help.  But it isn’t enough to reverse Celiac Disease and heal the damaged intestinal lining, dramatically increasing your risk for cancer… and a shorter life.  Not to mention the pain and suffering a laundry list of symptoms over the years.

Why My Mom’s Story Matters to You

My mom is a prime example of what can happen when Celiac Disease goes undiagnosed and untreated.  She suffered through stomach pain, an irradiated thyroid, rounds of chemotherapy, and an early medical retirement from her career.  Above all – we lost her too early.

That’s part of the reason I fought for my diagnosis… why I pressed my doctors to get the tests I wanted.  Why I followed my Gluten-Free prescription with the strictest adherence.

Yet I still suffered from life threatening symptoms.  So much so that I wrote my first will at the age of 24 because I didn’t think I’d live much longer unless they miraculously figured out what else was wrong with me.

Then I got lucky and found a new doctor with new ideas about what it meant to treat Celiac Disease.  A new doctor, that finally helped me stop my diarrhea for the first time in 6 years.

I’m one of the majority…

One of the 60% that didn’t get better from a Gluten-Free diet alone…. I needed to do more to treat my Celiac Disease.

 

Thank for reading, following, caring and praying,

Lori