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CELIAC DX FOLLOW UP INFO

Saturday, January 20, 2007

I got this shortly after my diagnosis, I believe it was written by a pharmacist.

THINK CELIAC DISEASE

FOLLOW UP

After a diagnosis of Celiac Disease is made, additional follow up tests are recommended. These include:
i Blood work for vitamin and mineral deficiencies
i Thyroid Screen (note: Patients on thyroid replacement and other medications may need frequent monitoring for dosage adjustment once their absorption improves.)
i Bone density scan
i Liver enzymes

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.
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.

CONTINUING SYMPTOMS

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 CD, 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 (Lacaid, ___) used when ingesting dairy products. Re-colonizing the small intestine with beneficial bacteria (see probiotics, below) is also recommended.

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 Cadida. 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 Belmar Pharmacy at 303-763-5533. 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. York Labs tests for both IgG and IgE reactions to other foods, by mail, without a prescription. See: www.yorkallergyusa.com. 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, at Great Smokies Diagnostic Laboratory (www.gsdl.com ).

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

Decreased stomach acid
Low stomach acid (hypochlohydria) may interfere with the effectiveness of one’s 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 (found in the refrigerated section at Vitamin Cottage) also 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 from Kirkmann ( http://www.kirkmanlabs.com) and for Enzymedica’s (www.Enzymedica.com) V-Gest (formerly “Carbo”) and Digest capsules. Animal derived enzymes are available by prescription. Experiment to see what works best. To avoid heartburn, start by sprinkling ½ 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.

Other Possibilities
Parasites and other bacterial problems
Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has CD, doesn't mean they can't have the bugs that a normal person with diarrhea may have!

Other autoimmune diseases
At least 1/3 of the people diagnosed with CD 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 CD may develop other autoimmune diseases even after beginning a gluten free diet.

  


Goal setting ...train hard and expect success!

Saturday, January 06, 2007

from my burnthefat.com email newsletter (just wanted a reminder):

Zig Ziglar once said that, "A goal casually set and lightly taken will be freely abandoned at the first obstacle."

You might want to back up and read that quote again, maybe even write it down or print it out, because this one hits the bull's-eye!

This truly explains why New Year's resolutions almost never work, and why so few people can keep off the pounds after they get rid of them.

Goal setting should not be casual or lightly taken. Goal setting is an important and serious matter. This is not a game - this is your life, and you only have one life to live.

Goal setting is also not a one time event - it is an ongoing process
of literally "re-wiring your brain." With the discovery of brain plasticity, we now know that this is science fact, not self-help fiction.

Make the time to set REAL goals, today! Take it seriously, do it
scientifically, re-write your goals every day, think about them constantly, get emotionally involved with them and then take massive action

Do it and this will be the most successful goal-achieving year of your life

Train hard and expect success.

Tom Venunto

  


Organic if you can ...

Monday, January 01, 2007

Here is info on finding organic produce and what to look for:
http://www.mercola.com/2006/aug/17/how_t
o_get_inexpensive_organic_locally-grow
n_vegetables.htm

You also have to be wary of SOME organic and really understand what you're buying:
http://www.businessweek.com/magazine/con
tent/06_42/b4005001.htm?chan=search

Dr. Mercola's site also discusses what codes to look for:
http://www.mercola.com/2006/dec/30/choos
ing-the-best-organic-foods-in-a-grocer
y-store-can-be-tough.htm

RE: genetically modified foods:
http://www.mercola.com/2004/jan/24/gm_fo
ods.htm

  


On diagnosing celiac children: one story.

Sunday, December 31, 2006

From Living Gluten-Free for Dummies, Danna Korn, author.

How the gluten-free lifestyle saved my son.

I didn't aspire to do any of this. I was deeply involved in a successful career, and was a mommy first and foremost. But today I'm an accidental author, researcher, and support group founder who was pushed into the deep end of the gluten-free pool and realized I needed to learn to swim. Fast.

Until 1991, my family and I ate a fairly typical American diet. I tried to keep it nutritious (extra cheese on the spaghetti to add protein), and I was aware of the need to limit fat and calories (scratch the extra cheese), but we didn't spend a lot of time worrying about what we ate or the long term effects food may have on our bodies. We pretty much took eating for granted.

All that changed when my first child, Tyler, was about 9 months old and developed what seemed to be chronic diarrhea. The pediatrician chalked it up to the antibiotics Ty was taking for ear infections and told me to call if it hadn't cleared up in a few weeks. Three weeks later, I was back in the ped.'s office. "Yep, he still has diarrhea," the doctor declared with confidence. "Yeah, I know. That's why I'm here," I mumbled with self-restraint worthy of the Nobel Peace Prize. "Give him foods that will plug him up like crackers and bread - and call me if it hasn't cleared up in a few weeks."

I waited. Not patiently (patience isn't my greatest strength), but I waited. Three weeks later, after another perfunctory exam of Tyler's ears, nose, throat, the doctor made that "mmhhhmmm" noise that doctors make when they figure out the problem. Yay! We were finally going to get some answers! "Yep. He still has diarrhea." All those years of med school had really paid off. "Don't worry about it. He's not dehydrated, and he's in the 75th percentile for height and weight. It's nothing to be concerned about." Gee, could the fact that I practically infuse him with liquids have anything to do with the fact that he's not dehydrated? And does the fact that he started off in the 99th percentile and has *dropped* to the 75th mean anything? Apparently not. I was instructed not to bring him back for diarrhea because there was nothing to be concerned about. If I was going to insist on bringing him back, I'd be kicked out of that pediatric office. I guess they meant it.

Doctor number two agreed with doctor number one. After a quick look in the ears, nose and throat, he declared that we had a healthy baby boy. "But what about the diarrhea?" I eeked. "Really, it's nothing to worry about. He's a healthy height and weight, he's not dehydrated, and he looks fine to me," he chirped as he raced to his next four-minute appointment. I considered offering Doctor Do-Nothing a close look at the 22 diarrhea diapers a day that I was changing, but somehow managed to control myself.

In desperation, we changed doctors again, and - long story short - a quick look into the ears, nose, and throat turned up - you guessed it - nothing. By this time, Tyler's belly had grown hugely distended, his arms and legs had wasted to skinny little limbs, his hiney had disappeared completely, and his personality had changed. He had transformed from a lively energetic toddler to a listless, irritable, clingy, and quiet little boy. It had been nearly a year since the diarrhea first started, and we figured we were just neurotic first-time parents with a mellow kid who pooped a lot.

Eventually, we ended up in the hands of doctor number four. By this time, "realizing" there was nothing wrong with Tyler, I thought nothing of dragging a lifeless baby with a Biafra belly into the pediatrician's office for a routine visit. After looking in Tyler's ears, nose, and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see whether it's ripe. "My goodness," he said with that I'm-alarmed-but-I'm-a-doctor-and-don't-wan
t-to-freak-you-out tone. "What's going on with his belly? It's very distended." I couldn't answer through the tears of relief.

After testing for cystic fibrosis, blood diseases and cancer, we finally got the bittersweet diagnosis. "Your son has celiac disease." *Huh?* Is that anything like the flu? Surely a few weeks of antibiotics will wipe it out. "He'll need to be on a gluten-free diet for the rest of his life."

I don't have room here to give the details of the rest of the story, but you can read it in my other books or on my websites. Suffice it to say that the words "for the rest of his life" had a huge impact, and we realized it was time to step up to the plate and do some research and lifestyle and attitude adjustments to help ourselves -- and others.

When we heard that Tyler would have to lead a gluten-free lifestyle, we had come to a fork in the road. At first, we were devestated, confused, frustrated, and grief-stricken. But we knew there was another path we could choose -- a path that would have a more positive effect on Tyler's life. As we found out how to live with the diet and its ramifications, we worked hard to find a way to turn the adversity into a positive force in our lives. More than a decade later, I realize that what we once interpreted as misfortune has actually been a huge blessing in our lives - and most importantly, Tyler agrees.

Danna's website address: http://www.glutenfreedom.net/

Or Google "Danna Korn" to find other links or references to her work.

  


Checklist for Food Tracker & Satiety

Saturday, December 30, 2006

From my favorite doctor, Dr. Mercola's website, here's a food and mood tracker form to fine tune your feelings after you eat a meal.

I used to feel hungry all the time, but when I upped protein intake and reduced carbs, I wasn't always looking in the cupboards or fridge to fill that empty feeling. I hope this helps you think about how your food is working for YOU!

www.mercola.com/forms/mtt_tab
le.htm

  


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