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The Untreated Celiac Disease Epidemic: What can we learn from our parents?

The Celiac Disease Epidemic

On June 10th 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. That’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 meteoric 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 bathe 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 one problem lies in the fact that only ½ the people with Celiac Disease actually have significant diarrhea as the primary symptom[5].

Additionally, 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 an 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 also 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 could 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:

Jordan – 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 can present themselves as part of Celiac Disease and simply removing gluten can help. Many people even see a disappearance of random symptoms after they go gluten free.

However, if you have Celiac Disease and any of the these symptoms are still present… even on a Gluten-Free Diet, it’s likely gluten free isn’t working for you. It might be providing some relief, but it’s not healing the underlying damage in your gut… which dramatically increases your risk for cancer and the other diseases I just mentioned.

That doesn’t mean all hope is lost either….

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.

And in this series, my goal has been to share why the Gluten Free Diet isn’t enough to stop the symptoms of Celiac Disease and propose a step-by-step process you can follow to reverse the damage. If you want to learn more, check out the other articles in this series:

http://celiachandbook.com/author/jordan/

- Jordan

Citations:

1. Dubé C, Rostom A, Sy R, Cranney A, Saloojee N, Garritty C, Sampson M, Zhang L, Yazdi F, Mamaladze V, Pan I, Macneil J, Mack D, Patel D, Moher D. The prevalence of celiac disease in average-risk and at-risk Western European populations: a systematic review. Gastroenterology. 2005 pr;128(4 Suppl 1):S57-67. Review.

2. Rubio-Tapia A, Kyle RA, Kaplan EL, Johnson DR, Page W, Erdtmann F, Brantner TL, Kim WR, Phelps TK, Lahr BD, Zinsmeister AR, Melton LJ 3rd, Murray JA. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009 Jul;137(1):88-93. Epub 2009 Apr 10.

3. “Report: Gluten-free Momentum Accelerating” http://www.mediapost.com/publications/article/146118/

4. “Gluten-Free Foods and Beverages in the U.S., 3rd Edition” http://www.packagedfacts.com/Gluten-Free-Foods-2710664/

5. Farrell RJ, Kelly CP. Celiac sprue. N Engl J Med. 2002 Jan 17;346(3):180-8.

6. Askling J, Linet M, Gridley G, Halstensen TS, Ekström K, Ekbom A. Cancer incidence in a population-based cohort of individuals hospitalized with celiac disease or dermatitis herpetiformis. Gastroenterology. 2002 Nov;123(5):1428-35.

7. Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Small-intestinal histopathology and mortality risk in celiac disease. JAMA. 2009 Sep 16;302(11):1171-8.

8. Holmes GK, Prior P, Lane MR, Pope D, Allan RN. Malignancy in coeliac disease–effect of a gluten free diet. Gut. 1989 Mar;30(3):333-8.

9. “Celiac Disease Statistics” http://www.celiac.com/articles/1164/1/Celiac-Disease-Statistics/Page1.html

10. “Celiac disease – sprue” http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/

11. http://www.cureceliacdisease.org/medical-professionals/guide/treatment

12. Rubio-Tapia A, Rahim MW, See JA, Lahr BD, Wu TT, Murray JA. Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet. Am J Gastroenterol. 2010 Jun;105(6):1412-20. Epub 2010 Feb 9.

13. Lanzini A, Lanzarotto F, Villanacci V, Mora A, Bertolazzi S, Turini D, Carella G, Malagoli A, Ferrante G, Cesana BM, Ricci C. Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet. Aliment Pharmacol Ther. 2009 Jun 15;29(12):1299-308. Epub 2009 Mar 3.

Disclaimer

This article is for informational purposes only, and is educational in nature. Statements made here have not been evaluated by the FDA. This article is not intended to diagnose, treat, cure or prevent any disease. Please discuss with your own, qualified health care provider before adding in supplements or making any changes in your diet.

  • Sheri

    I miss your Mom on a daily basis.  I’m so sorry she didn’t find the answer but so glad you did!

  • Sheri

    I miss your Mom on a daily basis.  I’m so sorry she didn’t find the answer but so glad you did!