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, I’m going to reveal 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.
The next post: “How Gluten Causes Celiac Disease”
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{ 14 comments… read them below or add one }
Great post Jordan, it’s so important that this information is spread more widely.
Thanks Roger! I really appreciate that.
Jordan
Jordan,
I’m glad that you were able to push for a diagnosis in your own case. I can’t believe how long it took for my Celiac Disease to be correctly diagnosed; I suspect I’ve had it since birth or soon after. I was actually chatting on FB with a friend of mine the other day who also has gluten ataxia (it’s nice to at least know one person who has what I have! – and she’s really sweet), and she had posted this interesting link: http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-in-the-diet-triggers-many-neurological-problems/
I’m sorry to hear about your mom.
We assume, on the Gluten Free diet, that these other grains are fine for us to eat which also have glutens, but there is little research to back up this theory. The more people I talk to in the last year, the more I hear murmurings suggesting that folks are starting to think critically about what these other grains may be doing to us as well. I think it’s a great question and can only hope that in time, some of those research $’s will get funneled through to perform adequate testing and see how folks with CD react to these other glutens and if these other grains and grain products can stall full healing.
One more reason I’m so grateful for SCD!
Gutsy Girl
I, too, am one that the gluten free diet didn’t work for. I was self diagnosed and followed a strict gf diet for 6 years until D got so bad that I was hospitalized for dehydration. They did an endoscopy and biopsy and said yes, you have cd. We didn’t even need a biopsy to tell because the disease was visible. They insisted that I was getting gluten from somewhere. That was in 2008. Not until 2011 did I learn about the SCD diet. I am doing better on it, but all is not perfect yet. I guess with a lifetime of damage, it will take many years to heal.
Sent your post to my 9 siblings. Mom died of Scleroting cholangitis,and experienced so many of these symptoms from what I can tell, but she was not irish/scottish=she was 100% dutch american. Having 11 children will kill most women, but it was not about us, so much. Anyway, your diet has helped to heal my colon. I keep falling off the wagon while on the prednisone, but have decided I just need to go cold turkey-stop the madness and get over wheat and sugar. Doc wants me to take remicade now. Can’t do that one. So this is time to face the facts. Has anyone tried fecal infusions? He really wants me to do that, but I am not sure I can do that either, since it is not a legal procedure in the U.S. He has tested me and not Celiac disease. Too many antiobiotics over the years I suppose. I am on grain free diet when I can stick to it.
A very, very moving post–and frightening. So many people are suffering and do not know know where to turn. I was one of them. According to the doctors, I do not have Celiac Disease but I do have a sensitivity to gluten (along with collageneous colitis). A year of being gluten free was no help at all. The Specific Carbohydrate Diet (SCD) saved my life. Thank you for your guidance and encouragement as I learned how to navigate the stages of SCD. Thank you for helping me feel good again.
Thank you for such kind-hearted comments. Share you story with anyone that will listen and raise awareness… you are so amazing
I hope that together we can educate more people that The Gluten-Free Diet just doesn’t cut it.
Jordan
After reading your story I don’t fell alone. I have been suffering with a diagnosis of IBS for 30 years. Doctors use IBS when they can’t figure out what you have. We’ve all been there, diarhea- hits at the most inappropriate times and worse when you are away from home! I’ve missed so many occasions that I lost count. I’ve spent hours in public restrooms that I was so embarassed and used the ‘stomach virus’ excuse to avoid questions. Finally, after years and years of suffering I decided to do my own research. A friend has CD and she said you could be gluten intolerant. I told my doctor who said he would first try a bloodtest, which proved negative. I told him I’d like to do my own test, stop eating gluten. He said, well it is possible that you could be gluten intolerant or gluten sensitive and no test will tell you that, and by eliminating gluten will tell you how you react in time. I gave it 6 months as a first marker for my goal. I have to admit I did feel better within 30 days, and as each day went by I felt better. But still out of the blue would have my attacks which I could not figure out. I was following a strict gluten free diet, or so I thought. From all of my research, talking to people that have CD, it is a life long committment and the damage done to your intestines never heal 100%. Am I better? Yes, I now can go out not wondering where is the bathroom in this place? But I know that the attacks will surface because somehow not everything is 100% in life. Learning to buy gluten free was an education in itself. I’ve learned to cook differently. I know what I can and cannot eat. I read labels. Gluten has other names for it. I also discovered that gluten is hidden in so many things that it is impossible to completely avoid it. It is in soaps, cosmetics, and toothpaste. But each day I learn more and more and hopefully one day I will be able to be 99% better. It is so comforting to read that there are others out there that understand what I experience. We’ve come a long way and more awareness needs to be done so you can go out to a restaurant and not feel like you may or may not make it home in time as the chef cooked your meal in a pan not dedicated for gluten free meals. I wish everyone on this posting much luck and good health.
Hi Jordan, Sorry about your mom. My mom died at 49 had some digestive issues but never went to doc, we’ll never know if that’s where I got celiac. Totally agree with you that a gf diet is not enough! Low carb and exercise makes me feel so much better. Yay for Make Over Your Morning!
Jordan, Thanks for excellent overview of celiac. Our daughter was diagnosed almost 8 years ago and has been gluten free ever since. However she was also diagnosed with Crohns 3 years ago. I have heard from numerous doctors that there is no connection. I disagree! Since starting SCD 7 months ago, we finally have seen perfect lab results along with a healthy growing girl who is introducing her 4th grade friends to spaghetti squash and lettuce wraps. Adhering to any diet GF or SCD has challenges – but we are witnessing the healing power in our house and that is motivating! It is refreshing to see how far Gluten free has come in 8 years – here is hope to the fact that SCD might make it there as well.
Thanks for sharing your experiences on these topics – the more we can educate the better!!
Jordan,
Since we live relatively close, I was wondering if you could share your open minded Dr.’s name with me. Half the problem with these diseases (and many others for that matter) is the Dr. is trained only in conventional methods and not willing or able to explore other alternative forms of medicine. Thanks, Cathy
Thank you for the awesome comments… you inspire me to keep pressing on with this series!
@Cathy – Dr. Will Page-Echols in East Lansing, MI was the one who first intro’d me to the SCD Diet. Here’s his website: http://fullspectrumfamilymed.com/
So many folks think Celiac’s disease is much less serious like lactose intolerance or other discomforts from eating. With every restaurant we interview, what’s most important is that they have GF options AND that they have a process in the kitchen to minimize the risk of cross contamination for any food allergy. Only 10% of restaurants “get it”. Having GF options alone, isn’t enough. Be careful but don’t let Celiac’s limit your social life!
Steve Rosenbaum, Founder of AllerDine.com, the Celiac and Food Allergy Restaurant Guide
Thank you for sharing your heart about your mom. It makes me think of my kids and my desire to want to be well for them. I am 54 years old and have 3 beautiful adult children that I love very much, plus a wonder new Daughter-in-law, and the all want me to hang around for a long time. Anyway, my story is much like many who have written here. I have probably dealt with Intestinal/Stomach issues since I was a kid. By 21 one I had been labeled with IBS and Acid Reflex. The Doctor at the time said my upper stomach and esophagus was totally inflamed and of course they stuck my on medications that I weaned myself years later as I learned new things about diet and exercise. But even after a while that didn’t work and I was exercising about 3 hours day at the time and eating a low carb diet and not losing weight. I had gone from a size 7 junior size to a size 14 misses in my 40s doing the right thing. Oh, and after exercising all I wanted to do was sleep and my body was really starting to hurt, joints, muscles and migraine headaches . My husband then said to me, I think you’re having problems with your Thyroid, why don’t you get it checked out. Sure enough I was tested positive for Hashimoto’s Thyroid Disease, which has been a struggle in itself finding the right doctor that would managed that properly. I still continued to eat a low carb diet, because I had a sister who died from Diabetes at age 60. She was in a horrible condition when she died. The disease was nasty to her. It was awful to watching her life decline and her death was mortifying and ugly. So, I continued to eat low-carb, and one thing that began to stick out to me was when I didn’t eat bread or pastas, which one doesn’t eat a lot of on low carb diet, I wasn’t having as many intestinal issues. Especially in the first phase of the diet, you don’t eat any breads or pastas, I was totally eating just meat, low carb vegetables and some low carb fruits and that’s when, I felt my best of course along with taking my Thyroid medication. But I noticed that I started feeling sick, after introducing breads. I had just made a banana nut bread with a very high gluten flour and splenda. Oh I was so sick, I thought it was the splenda and never used it again, it didn’t connect with me that it was the high gluten flour that I was using at the time. But as time went on my brain began to connect the dots as I did research. Finally in my early 50s, my adrenal gland started having problems and one of my doctors was considering to use natural bio-identical cortisol to help a slowing adrenal gland, since it was causing problems with bringing my Thyroid levels up to a normal number. Anyway, it was at this time I went and got myself tested for Celiac Disease and I used an unconventional testing that is not yet peered reviewed along with getting my DNA checked at EnteroLabs http://www.enterolab.com/. The test came out not just a little sensitive, but of the records crazy high of the charts high in every area that I was tested for Gluten. Plus my DNA came back positive as having one DNA GENE for Celiac. So, in my mind there was no way this was a false negative. If, my numbers had come back really small or slightly, as it did with Casein sensitivities, I would have just ignored it. But the numbers, plus DNA said RED FLAG. I have Celiac Disease, so I started on a Gluten Free Diet. It sort of helped, and intestinally I began to feel better and bloating started to go down then was at age 52. My Doctor kept saying it’s probably going to take a while, because I have had this all my life. He never told me I may not heal. I heard that from the person who lead our local chapter for people who had celiac Disease. Anyway, it is now been two years exactly, since that test and me going Gluten Free. Yes, it is a learning curve to learn where glutens are hidden, but I think that I hate the most is that I have worked hard to getting glutens out of my life and I am very diligent to check and call companies, when I am using their products. My Kitchen has been gluttonized. There is not a speck of it in my home. I even bought new pots and pans and went to using glass containers, instead of plastic. Make-up such as foundation and lipstick was changed along with all types of things one uses, including toothpaste. I have been diligent on this diet, but I still have problems. So, I was beginning to ask my Doctor, could there be anything else that could be brothering me and causing these problems. And he basically told me it would be a waste of time to figure it out and not to worry about it. Besides what would you eat since you already eat low-carb, your Gluten Free and you also don’t eat dairy, corn or soy. What else could you be having problems with? I mentioned I think rice might be a problem, which I was eating occasionally. He said look, you’re going to get bored with eating and you’re going to cheat, if you take anything else out of your diet. AND I’m concerned that you won’t being eating enough healthy foods in your diet. At that point, I was a little bugged by what he said, but I didn’t get angry with him. I just want to feel better and was hoping there is an answer. But I was also a little bugged, because I was noticing that some of the supplements that He had been giving me had rice in them and also rice malt dextrin, which is supposed to be safe Celiac or Gluten Sensitivity. One or the products, I gave back to him was a protein type powder with mainly rice protein, was really making me sick when I used it, so I gave it back to him. He just kind of laughed and didn’t believe me. Then I began to realize that the HGH supplement that I was using also had Rice Maltodextrin in it, but I finished those off, because I didn’t want him laughing at me. But as I used them my Acid Reflex really got bad and by the time I was finished using the product. I was having really bad Acid Reflex. I was happy that he didn’t want me to go back on them again. Maybe he believed me about rice, I don’t know. What really drove me crazy is when I found out that one of the Virus medication I had been taking had Wheat Starch in it. For months I had been talking this product, and I was trusting my Doctor that it was a safe medication. It wasn’t until, I received this medication in its original box this last time that I could finally read the ingredients for myself and on the box was Wheat Starch. Well, I didn’t panic right away, but now I had the info to call the company to see what they meant by wheat starch, because Wheat Starch pharmaceutically is supposed to be free of Wheat Glutens. Well, it wasn’t and the company that made the product could not tell me how much wheat gluten was in it, but they new it was under 309pp, because that was all the Wheat Starch they were allowed to use in the product. But they told me if I was highly sensitive to Wheat Glutens that this was probably not a good product for me to use. Wow!!!! Here I had done my part to keeping myself clear from glutens, and I’m getting it in the medication I was taking. Wouldn’t the Doctor know this? Well, Companies don’t always report to doctors, when they have changed a product. Yes, originally the product that I was taking was Gluten Free, but two years prior in 2009 the company decided to change the product to using Wheat Starch. They did not tell Doctors of this change, but they did posted it on their web site not in real big print, but it’s there. How can a doctor keep up with this for all their patients. So, I didn’t get mad with my doctor, until my husband brought the medication back to the office and he did not really respond with any positive remarks, “Like I really feel bad that this happened and we will have to be more careful, but will make sure it doesn’t happen again. Instead he barely talked with my husband at all and just said oh Well, I guess we will have to do better and walked away without any remorse or concern for me. My husband was livid. Of course he kept it all under control and thank goodness the office refunded are money for the medication. Anyway, this has been a frustrating journey, and now I will be visiting a brand new doctor on March 22. It’s possible that she will be putting me on the SCD diet, which is what an e-mail from her office mentioned might be a possibility for me. So, I have been researching it to try to understand it. My concerns is the use of Honey and some of the High carb fruits later on in the diet. Anyway, my journey still continues and I hope this new Doctor will have a better idea of what I need to do for diet. If it’s the SCD Diet, I don’t care. I just want my life back. My family needs me.