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Celiac Disease Treatment and Continuing Symptoms by Mary Anderies

Celiac.com 03/26/2007 - Ongoing digestive symptoms and other systemic problems for individuals with Celiac Disease who are on a gluten free diet are fairly common. While Celiac Disease itself is becoming more widely recognized, its effects on multiple parts of the body and its ongoing symptoms remain more obscure. While this article is not meant to provide medical advice, it is intended to provide a summary of possible causes that you and your health care provider may want to explore further.

Celiac Disease Follow Up Treatment

After a diagnosis of Celiac Disease is made, additional follow up tests are recommended immediately after diagnosis and on an ongoing basis. These include:

  • Blood work for vitamin and mineral deficiencies
  • Thyroid Screen (note: Patients on thyroid replacement and other medications may need frequent
  • Monitoring for dosage adjustment as their absorption improves.)
  • Bone density scan
  • Liver enzymes

Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems.

Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal.

Note: Calcium and Iron status will improve in most individuals even without supplements once the intestine heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet.

Celiac Disease and Ongoing Symptoms After a Gluten-Free Diet

Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below:

Hidden Gluten Exposure

Look for any possible sources of gluten exposure. Binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. should be explored. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure.

Lactose Intolerance

Especially during the healing phase of celiac disease, intolerance to lactose, a protein found in dairy products, may be seen. Enzymes needed to digest lactose are manufactured by the intestinal villi, which have been damaged by exposure to gluten. Often once the villi have regrown, symptoms of lactose intolerance will subside. Testing includes Lactose H2 breath testing. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with beneficial bacteria (see probiotics, below) is also recommended.

Helicobacter Pylori

A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for Helicobacter Pylori at the time of, or within 1 year of their celiac disease diagnosis.

Small Bowel Bacterial Overgrowth

In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO.

Yeast Overgrowth

Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered.

Other Food Sensitivities

Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves.

Digestive Function

Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription.

Intestinal Motility

Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts.

Decreased Stomach Acid

Low stomach acid (hypochlohydria) may interfere with the effectiveness of ones own digestive enzymes and may create an environment that encourages yeast or bacterial overgrowth. Additional information may be found in the book "Why Stomach Acid is Good for You" by Wright & Lenard. Testing may be done using the Heidleberg Capsule or Gastrocap tests. Supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store, may be helpful.

Beneficial Bacteria

Probiotics are very helpful for regaining the balance of the intestinal flora. Use ones that have multiple kinds of bacteria. The ones found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures.

Digestive Enzymes

Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Recommendations have been made for the vegetable based enzymes Which may be ordered through the internet or found in health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To avoid heartburn, start by sprinkling ½ of a capsule on food & increase as needed and tolerated. Be sure to carefully check the Gluten-Free status of all enzymes. It is common for the Maltase to be made from barley.

Carbohydrate intolerance

Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall. She recommends eliminating all complex carbohydrates to kill off the bad bacteria.

Parasites and other bacterial problems

Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesnt mean they cant have the bugs that a normal person with diarrhea may have!

Other Autoimmune Diseases

At least 1/3 of the people diagnosed with celiac disease as adults will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations.

Ms. Anderies also serves as a member of the Denver Metro Chapter of CSA/USA Medical Education Committee

Celiac.com welcomes your comments below (registration is NOT required).



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9 Responses:

 
Mary Morley
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Feb 2008 8:22:41 AM PST
My doctor recommended the Probiotics and this article mentions them in a natural environment which I did not know was available.

 
sandra
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said this on
25 Feb 2010 5:26:15 PM PST
I have gone through every test available, and these test have shown nothing. I have cut back on wheat products, this seems to help. What other test are available!?

 
Nancy
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said this on
17 Aug 2010 4:21:42 PM PST
Excellent information!!! As 4 months in to being gluten free I am still battling symptoms.

 
Paula
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said this on
10 Jun 2011 2:16:55 PM PST
Very helpful

 
Mary
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said this on
07 Nov 2011 11:24:20 AM PST
I still have all the same symptoms as before. I was diagnosed celiac in 2009. I am tired, and bloated and do take laxative and multivitamin daily. Hoping to get better. I also eat natural foods and read all products before purchasing.

 
Gordon
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said this on
16 Jan 2012 7:43:17 AM PST
I have celiac disease. I had a problem with continued symptoms for several years on a strict gluten free diet. My doctor first prescribed a five day treatment of an antibiotic called Ciprobay to clear out excess stomach bacteria, and then prescribed a low dose - (one tablet twice a day) of a drug called Librax (used to treat IBS). Since starting this a few weeks ago, the symptoms have gone. Long may it last!

 
Anne
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said this on
27 Feb 2013 2:46:16 PM PST
Thank you for this great information. I am recently diagnosed, at 44 years, and as I get used to the strict diet, my question is about how to heal the gut. Avoiding dairy is one measure. Are there other foods/drinks to avoid? Are there foods to consume to help the healing? Kefir - I understand the value regarding probiotics, but it is a dairy product. Are there guidelines around the consumption timing of kefir? Other foods/drinks?

 
Rich
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said this on
06 May 2013 1:03:21 PM PST
I have had these problems for 10 years. I am just now getting REAL help from my VA doctors that actually knew very little about celiac disease. I have been assigned to a specialist and hope for the best. I was breaking out with the worst rash possible from this. I am now taking dapsone and it really helps. The one pill I never skip!

 
Sherry
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said this on
17 Nov 2016 8:21:28 AM PST
A dietitian, a health care professional who specializes in food and nutrition can help you with the gluten-free diet. There are also support groups that can help people with celiac disease make the adjustment.




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