Why Do Some with Celiac Disease Never Heal?

on Apr20
by Dr. Vikki Petersen | Print the article |

In the advance online issue of The American Journal of Gastroenterology February 2010, the results of a study performed at Mayo Clinic were reported. These are very important findings for those suffering from gluten intolerance.

Majority Show Damage Persisting After 5 Years Gluten-free

Dr Murray, a long-time researcher in the field of gluten intolerance, reported that in 57% of adult celiacs, tissue damage persisted after 5 years of adherence to a gluten-free diet.

In an effort to evaluate the effect of persistent intestinal damage on long-term health he concluded that regardless of age or sex, adults with celiac disease whose intestinal tissues healed were less likely to die from all causes than were men and women with persistent damage.

So now you see why I persevere about healing the gut – it’s actually a matter of life and death.

The study was conducted on 241 adults, 176 of whom were women with an average age of 47.  The participants were confirmed as having celiac disease and the group had follow-up biopsies 2 and 5 years after their initial diagnosis.

Even Those Following the Diet Continued to Have Damage

Dieticians who met with the participants deemed that 66% had good adherence to a gluten-free diet, which is a common percentage compared to other similar studies. Yet only 43% of those patients who were diligent on their diet achieved intestinal healing.

In summary, 34% of the celiac population does not follow their diet, and thus we can assume have poor intestinal healing.  And of the remaining “good” gluten-free followers, 57% still do not achieve the goal of intestinal healing and recovery.

72% of Celiacs Don’t Heal – Increasing Their Rate of Death

We have a problem.  Taken as a whole, 72% of our celiacs do not achieve intestinal healing and therefore are, according to this study, more likely to die from all causes as compared to those who have achieved healing.

I emphasize “all causes” because I think it speaks to the fact that gluten affects so many systems of the body that those who suffer from an intolerance are subject to feeling it’s effect in a multitude of ways.

While the researchers noted that perhaps gluten was “sneaking” into the diets of those who appeared compliant, I personally don’t believe that answers the predominant cause behind the issue of poor healing.

In fact, I am convinced that the biggest problem arises from the fact that “all” we do is remove gluten and it’s not adequate. Removing gluten doesn’t equal healing. It is certainly a mandatory first step but it’s inadequate to restore the intestine to normal, optimal health.

What should you do? Read on.

Steps to Take to Optimize Healing

Certainly the first place to begin with any patient whose healing is not occurring is to meticulously examine what they’re eating in order to eliminate any hidden sources of gluten.  But it’s important to not stop there.  Other steps must also be taken and these are some of what we do with our patients to a very good result:

1.  Eliminate dairy products.  They are a known inflammatory agent to the intestines and I see much better results when patients exclude dairy products from their diet.

2. Get evaluated for any infectious organisms such as parasites, bacteria, amoeba and yeast. The presence of such organism prevents healing. This is done with a lab test.

3. Evaluate the health and diversity of the probiotics in the intestine.  It is difficult to overestimate the importance of having a strong gut immune system and the 60 trillion organisms that make up the probiotic population of a healthy gut are an integral part of it. This evaluation is done with the same lab test as step #2.

4. Discover any nutritional deficiencies such as vitamin B12, D, folic acid, etc. This is also done with a lab test.

5. Consume more organic fruits and vegetables.  The average American requires seven to nine servings of fruits and vegetables per day and I sometimes  question whether they even achieve two.  The special antioxidant nutrients in fruits and vegetables provide great healing and detoxification to the intestine and the body as a whole.

6. Stay hydrated.  I find many patients are dehydrated and can’t adequately eliminate toxins due to this state. A minimum of 8-10 glasses of purified water per day will suit most people.

7. Strive to eliminate as many medications as you possibly can from your system.  Many are known to create a leaky gut, exactly the opposite of what you are striving to achieve.We regularly are able to eliminate medications for our patients once healing has occurred.

Whether you have celiac disease, gluten sensitivity or are just suspicious that gluten intolerance could be affecting you, this is important information to know. Too many people are suffering from ill health and literally dying from undiagnosed gluten intolerance.

We are here to help. Our Destination Clinic sees patients from across the country as well as internationally. Please let me know how best I can assist you.

To your  good health,

Dr Vikki Petersen, DC, CCN

Founder of HealthNOW Medical Center

Co-author of “The Gluten Effect”

Permission is granted to repost this article in its entirety with credit to Dr Vikki Petersen & HealthNOW Medical Center and a clickable link back to this page. Dr Vikki Petersen, DC, CCN is founder of HealthNOW Medical Center and the author of “The Gluten Effect”.  She has been featured in national magazines, international medical journals and is a frequent headlined speaker.


The Author

10 Comments, Comment or Ping

  1. Anne

    1

    Is it possible we also need to remove all grains. I don’t have biopsy proof of further healing, but I know I feel much better when I avoid grains completely.

    There is a group of people who are gluten free but approach the diet from a different direction than those diagnosed with CD. They are gluten free because they are following a paleo or primal diet. This removes all grains, legumes, seed oils, sugars and usually all dairy. Maybe in order to heal we need to get back to the basic foods we were meant to eat.

    Is it difficult to give up all the sugary GF gluten substitutes? – well, yes, but my improved health is well worth the effort.

    20 Apr
  2. Jay

    2

    Around 1900 the New York pediatrician Sydney V. Haas became interested in treating children with celiac disease using diet. He experimented with numerous different diets but eventually found that complete healing was only possible if foods rich in starch, sucrose and other poly- and oligosaccharides were totally excluded. In 1924 his Banana Diet was published in the American Journal of the Diseased Child. He described this diet as “excluding all carbohydrates except those contained in fruit and vegetables with a large protein portion and adequate fat” (vegetables included pumpkin, squash and carrots but excluded starch-rich roots like potatoes, yams, sweet potatoes, parsnips and others). His meal recommendations were mainly meat with fat left on, full-fat soft cheese and milk curds containing little or no lactose, ripe spotty bananas, other fruit and gelatine made with fruit juice and honey. He claimed that cure was usually obtained within 18 months. He later called this diet the Specific Carbohydrate Diet. His book “Management of Celiac Disease” was published in 1951.
    The mother of one of his patients was so impressed with her child’s recovery that she researched this subject further and published an up to date version of this diet (“Breaking the vicious cycle” by Elaine Gottschall).
    Since then Natasha Campbell-McBride, a medical doctor based in the UK, has refined this further and concentrated on the psychological problems of gut disease. Her books include “Gut And Psychology Syndrome” which gives full details of the diet.
    The reason this diet works is that it supplies all of the necessary carbohydrate mainly in the form of monosaccharides which can be absorbed even by a damaged gut and does not provide energy to the ‘bad’ bacteria that are the main cause of damage (rather than gluten that just makes a bad situation worse). The symptoms of celiac disease are varied and different for each patient and the same applies to non-gluten-sensitive enteropathy/Inflammatory Bowel Disease but the list of possible symptoms is the same, they are essentially the same disease. The third world disease variously known as Tropical Sprue, Infantilism, Wasting, Stunting, Persistent Diarrhea and now AIDS can occur in places where gluten and grains are absent and children are fed on a diet high in starch and/or sucrose and low in protein and fat often mainly surviving on potatoes, yams, taro root, cassava etc.
    Unfortunately many textbooks oversimplify the gut and just refer to the villi as little fingers projecting from the walls of the intestine without referring at all to the microvilli.
    In real life new cells (enterocytes) are formed at the bottom of the crypts and these cells then climb up the sides of the crypts then up the side of a villus and only when they are mature (after a day or two) do they produce the microvilli near the top of the villus. The higher the dietary protein intake the faster these cells mature and the more microvilli are produced.
    Microvilli have two very different functions. 1)They are able to absorb the fats and fat soluble vitamins that atrophied villi are not able to do. 2)They secrete enzymes that break down disaccharides into monosaccharides that can be absorbed into the bloodstream. Although most people assume that all enzymes are secreted by the pancreas down the bile duct at the beginning of the small intestine in fact the carbohydrate splitting enzymes (amylases) can only break the oligo- and polysaccharides into disaccharide units (mostly isomaltose) which are too large molecules to be absorbed and require further enzymes from the microvilli. If the microvilli are missing then the gut will be full of unabsorbed disaccharides that provide ideal food for the ‘bad’ bacteria. These bacteria produce acids that prevent the enterocytes reaching the stage at which they produce microvilli and the enterocytes are shed into the gut and leave the body. This sets up a vicious cycle.
    To stop this vicious cycle it is necessary to stop feeding the ‘bad’ bacteria with starch, sucrose, lactose, maltose and many other oligosaccharides contained in starchy seeds, oilseeds, beans, milk, beer, rice syrup, gums and carrageenan, whilst feeding the body mainly with monosaccharides along with protein and fat.
    Unfortunately most “Gluten-Free” foods manufactured for people with celiac disease contain precisely these undesirable items and it is not surprising that they do not heal. In addition to the 72% who do not achieve intestinal healing after five years there are also many others who remain exquisitely sensitive to gluten and these cannot be considered healed either. People who have cured their villous atrophy with the Specific Carbohydrate Diet can eat small amounts of gluten without problem and no longer need to worry about small amounts of gluten contaminating their food. Only people with intact microvilli can absorb sufficient essential and other fatty acids and fat soluble vitamins for full health.
    Whilst eating some fruit and vegetables is undoubtebly desirable, many surveys have shown that the number of portions of fruit and vegetables eaten daily is not reflected in any health outcome. The EPIC survey done here in Cambridge UK did however find that people with high levels of ascorbate (vitamin C) in their blood were healthier than those with lower levels. It is much more important that people stick to their diet than that they get a particular number of fruit and vegetables per day. If the Specific Carbohydrate Diet is going to work for someone it will be obvious within 2 weeks providing they are doing it right.

    Anne,
    I don’t know if you count potatoes and yams as paleo but all other Paleo foods are perfectly compatible with the Specific Carbohydrate Diet. The latter allows certain tasty treats in addition. Egg whites are a good substitute for gluten in baking, just as good as the carbohydrate ones like carrageenan, xanthan and guar gum. Nut flours (except chestnut) are a good substitute for grain flours but contain very little starch and honey contains virtually no sucrose and can be used instead of sugar, you can make delicious muffins with ground almonds, butter/coconut oil/tallow, eggs and honey. Milk is not allowed but lactose free dairy products are.

    Jay Bryant, Cambridge. UK

    20 Apr
  3. Anne

    3

    Jay, because of insulin resistance/diabetes I don’t eat any of the high carbohydrate vegetables. I tried some honey in tea and it made my blood glucose soar. I do eat some nuts but have not used nut flour. I really don’t miss baked goodies. I use a glucometer to help figure out what I can and cannot eat as I want to keep my blood glucose at a truly normal level all day.

    I have some concern about carrageenan as it has been reported that it may cause intestinal inflammation.

    20 Apr
  4. daigoumee

    4

    Beneficial info and excellent design you got here! I want to thank you for sharing your ideas and putting the time into the stuff you publish! Great work!

    20 Apr
  5. 5

    Dr. Petersen,
    I am a celiac who was diagnosed at the age of 55, and am now 59. I have not been in any restaurant, other than a completely gluten-free restaurant, since before I turned 56.

    My doctor and I recognize that I get a celiac antibody reaction to breathing in too much gluten, not necessarily flour, but from heated wheat, or fresh baked goods. This can be from a gluten-consuming housemate toasting bread or boiling pasta. It has also occurred from walking up through Union Station in Chicago, breathing in all of the wheat from The Corner Bakery, someplace frying chicken, and ultimately right after Mrs. Fields took a huge barch of cookies out of the oven, only breathing after holding my breath for as long as possible. I am very sensitive and symptomatic, with the whole range of intestinal and neurological symptoms. I have a hyper sense of smell, which serves me well, since more than two lungfuls when I am smelling wheat will result in intestinal symptoms. A number of members and former members of my online support group experience the same sensitivity, whether it be from living downwind of a bakery, or flying on a commercial airline on a flight which served gluten foods, or living in a mixed diet family.

    I contend that a good number of celiacs who do not heal are in this category of sensitivity and do not know it. I did not heal enough to recover at all until my gluten-consuming roommate lived with his girlfriend for six months. It was only after this that it became obvious when he heated wheat products and I became ill and symptomatic two hours into breathing and smelling it. It takes me almost two months to recover from this method of exposure. Cross contaminated food and hidden gluten affect me very severely, and it takes six months to a year for me to recover from that level of exposure.

    My doctor is an MD who has been gluten-free for at least 20 years. I have not read your book yet, Dr. Petersen, but it disturbs me that I have not read anything that acknowledges this level of sensitivity, written by a doctor, much less any doctor who specializes in celiac disease.

    20 Apr
  6. jodi lee

    6

    I’m a new Celiac – and the learning curve is steep! These tips on helping the healing along will definitely be useful. There is so much to consider and I want to heal quickly to prevent all the other potential complications. Thank you for doing the work that you do.

    Jodi

    20 Apr
  7. 7

    Thank you for this post Dr Vikki. Our family has been gluten-free for two months now after our ten year old son began experiencing severe abdominal pain that has caused him to miss a lot of school this year. He seems to be getting better, but continues to experience some pain. Our pediatrician thinks it’s just malaise and that he is overacting. Our GI specialist doesn’t think any further testing is necessary (blood work, stool samples and an upper GI w/ small bowel follow through is as far as they went). I guess we need to cut out dairy too. The Integrative MD that identified the Celiac gene pairs for him tells us to cut out omega 6s as well – soy, nuts, seeds, avocados, chicken and turkey… Makes it hard to feed a boy who doesn’t like non-starchy vegetables!

    20 Apr
  8. Katie

    10

    I was diagnosed with coeliac disease when I was 13 years old, after no symptoms other than being underweight and having really bad acne. I stuck to a strict gluten free diet for 4 years, but at the age of 16 I began to develop nausea. By the end of the year, I was so sick I could barely get out of bed. I had dizziness, headaches, extreme, constant nausea and was always tired. I couldn’t go to school and there was a good chance I would have to be kept down and repeat grade eleven because I couldn’t keep up. I had been to every doctor and specialist and no one knew what was wrong. I had also come down with glandular fever, and was feeling miserable. My mum discovered the Specific Carbohydrate diet as a last resort, and after being on it for only one week I was feeling better. The glandular fever disappeared very quickly and as the days went on, I went back to school, got a job and even started going to the gym. I felt better than ever and every symptom vanished! I stayed on the diet for one year and it was the only reason I managed to graduate high school. I have been back on a relatively normal, (but still gluten free) diet for the past 6 months and I’m feeling well.

    20 Apr
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