My husband, John, is visiting the blog today with an article about the effects of a gluten free diet for those with celiac disease.
Recently, my daughter Nicole discovered a delightful French film called Romantics Anonymous. The film is about how two extremely shy people, who happen to share a passion for chocolate, meet and fall in love. The heroine of the movie is Angelique, a world-class chocolatier, who because of extreme shyness creates her masterpieces in relative obscurity.
Angelique tries to overcome her pathological timidity by attending an AA-type of support group meeting for those crippled with shyness. These scenes are both humorous and sad. Eventually, Angelique is hired as a salesperson for a chocolate manufacturing firm owned by Jean-Rene’, who is seeing a psychiatrist for his extreme shyness. The two eventually discover they are falling in love, and the rest is hilariously funny and heartwarming. Don’t let the subtitles dissuade you from watching; it is a very well done film and a must-watch for those who love chocolate.
Throughout the movie, Angelique fears that her shyness will always be a part of her, and that she could eventually lapse back into familiar self-destructive patterns. What does this have to do with celiac disease?
Like Angelique’s shyness, celiac disease (CD) is something that two of my sons and I will always have. It is an autoimmune disease with no known cure. Since the only recommended treatment is a strict gluten free (GF) diet, we must maintain that diet for the rest of our lives in order to have a chance for a healthy existence.
How Good Of A Treatment Is A GF Diet For The Adult Diagnosed With CD?
The question I have often pondered, though, is how well a GF diet works as a treatment for an adult diagnosed with CD. Consider this statement from the University of Chicago Celiac Disease Center,
“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal.”
Ok, I can understand that. Sixty percent of adult CD sufferers never heal because they may not be GF compliant. However, when I was forty-eight years old and learned I had CD, I went on a strict GF diet for 8 years and experienced only marginal improvement in my health. After 8 years, I still had chronic fatigue, painful joints, muscle pain, headaches, elevated liver enzymes, bloating, gastric distress etc, etc. etc. I was one of those people who felt sick almost every day. I often remarked to Barbara, “I don’t remember what it feels like to be healthy.” Why was the diet not working?
Consider another study performed in 2009 at the University and Spedali Civili of Brescia, Italy. Researchers looked at 465 CD patients and found only 8% of adult patients attained “histological normalization” after following a gluten-free diet for 16 months. The researchers concluded that,
“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD.”
Wow, did you catch that? I’ll repeat it. Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD. Granted the study sample is small, and the patients were only GF for 16 months. However, the study suggests that after going on a strict GF diet, most adults will not experience healing in their small intestines for at least a year and a half.
A Mayo Clinic Study
Here is a more detailed study from the Mayo Clinic in 2000. They reported that after observing 241 patients who had an initial diagnostic biopsy confirming CD, the rate of confirmed mucosal recovery at 2 years following diagnosis was 34%, and at 5 years was 66%. These rates were confirmed by a follow-up biopsy. Mucosal recovery means normal gut histology. The researchers do qualify the results by stating that after 2 years on a confirmed good GF diet, the recovery rate rose to 43%. Concerning the 5-year rate, they cautioned that the result was dubious because of the decreased sample size from the original.
From this study and the previous two it is fairly obvious that a significant percentage of adults with CD will not achieve complete intestinal health for a number of years following a GF diet.
The researchers at the Mayo Clinic ventured a suggestion as to why this may be the case, but they remained non-committal,
“However, the fact that only 67 (43%) of 156 patients with good adherence to a GFD, as determined by the dietitian interview, achieved mucosal recovery suggests that occult gluten sources (either cross-contamination or inadvertent gluten ingestion that are difficult to identify) or other yet unknown factors (e.g., genetics, age-related, duration of gluten exposure before treatment) may (italics mine) play a role in persistence of mucosal injury in adults with treated CD.”
In other words, the researchers suggest reasons why the intestines do not heal in some patients, but they will not venture a definitive answer.
How Do These Results Correlate With A Resolution Of Symptoms?
In terms of a clinical response to a GF diet, the Mayo Clinic study found that after 2 years on a GF diet, 56% of 235 patients had a complete resolution of symptoms, 26% had partial, and 18% had no clinical response at all. This means that according to this study, even though an adult CD patient is on a good GF diet, it may still take years for symptoms to disappear. So my lack of significant improvement was consistent with what can generally be expected for a large percentage of celiac patients who go on a strict GF diet.
Is A GF Diet A Good Treatment For Adult CD Patients?
The Celiac Disease Foundation states,
“Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet.”
This is true in one respect. Without a GF diet, the chance of intestinal healing is probably around 0%. However, as we have seen, that treatment may not produce significant healing or a resolution of symptoms in a high percentage of celiac patients. If a person’s age and his or her duration of exposure to gluten may affect healing negatively, then how good of a treatment is a GF diet for those of us who did not find out that we had CD until we were much older? How good is it for those of us who do not respond significantly for many years? (The GF diet may not always work for young people as well. See Jordan Reasoner’s story here).
Celiaccentral.org presents some statistics on CD that I was not aware of,
“…30% of people newly diagnosed with celiac are over 60 and the average age of diagnosis is in the 4th or 5th decade of life.”
I’m not surprised by these stats considering the well-deserved attention CD is now receiving from the media. Articles like this one from Reuters surely help.
However, consider someone who for 30 – 40 years has suffered with CFS, neurological symptoms, arthritic pain, thyroid issues, elevated liver enzymes, migraines, etc., etc., etc., with no specific diagnosis from doctors? He does not exhibit the classic CD sign of diarrhea. Every day he wakes up wondering if this will be the day he feels better, but he doesn’t. Then one day he discovers he has CD. Finally, he knows why he feels so terrible. It’s gluten!!! But then, the gastroenterologist cautions, “Even though you must follow a GF diet for the rest of your life, it may still take many, many years for you to heal and feel better. You see, CD has caused you to suffer all other kinds of physical problems. It’s also possible that you may never heal completely.” What? He now knows why he’s sick but he may not feel significantly better for years. The damage this disease does to one’s body and emotional state is unbelievable. It’s not something deserving of NASCAR jokes at the Super Bowl.
Are There Other Options?
But does it have to be this way? Is there no other way for the CD patient to possibly experience a resolution of symptoms faster? I think there is. As I mentioned previously, I was on a strict GF diet for 8 years and continued to suffer with severe atypical CD symptoms. Then 2 years ago, I decided to make a radical change in my diet. Within 6 months, I was about 50% improved. After about 2 years, I was about 80% improved. In the last 6 months, I am continuing to make progress. Days at a time go by when I don’t feel terrible anymore.
The question remains: Was it necessary for 8 years to go by in order for the GF diet to kick in or was it the dietary change that made me start to feel better? Because there was such a significant change when I instituted the new diet, I have to say it was the diet. The results were dramatic. I now feel healthier than I have in 29 years. Will the progress continue? I pray to God that it will. The diet is a GF diet. But it is one that does not mimic the Standard American Diet. Many of you have probably turned to something similar. I’ll share what worked for me in my next post.
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