Renewed Motivation To Strictly Follow Gluten Free Diet

I wrote this blog post a little more than a year ago which detailed my main Celiac Disease side effect, Osteopenia (or lowered bone density). The post goes into great detail about the bone scan process and my resulting test scores which indicated a severe impact to my bone density due to Celiac Disease and it's subsequent nutritional deficiencies. It's pretty clear to see that if you are not correctly absorbing nutrients then there will be a multitude of effects on the body, include loss of bone density.

At the time of my previous post last year, my score of -2.4 was technically Osteopenia, but right on the border of osteoporosis. I was pretty anxious heading into a recent follow-up bone scan to see if my scores had improved after being on the Gluten Free Diet and supposedly curbing the Celiac Disease induced damage to my body. My doctor had told me that correctly following the diet could lead to a recovery of my bone density. For some reason, you never really know if you are following the GF diet correctly or is some small portion of Gluten still contaminating you, anyone else feel like this? I guess tests like this along with repeat antibody tests can really go a long way to building your confidence level that you really are Gluten Free.

I'm happy to report that my bone density scores did improve. While still having Osteopenia, my scores were more toward the middle range, instead of the high/border-line Osteoporosis range. The results were much better in my smaller bones (like forearm) as these are the first to recover while improving only a little in my bigger bones (like hips). These results have definitely renewed my motivation to keep going.

As I have mentioned before, a Celiac Disease diagnosis is the beginning of your journey to healthy living - it's not the beginning of the end of your life. For us, our diagnosis is really our cure... not very many diseases are like that. If you are not getting follow-up care like repeat antibody tests or bone density scans, please check with your doctor or use my Health Network to find a doctor who is familiar with treating those with CD.

Celiac Disease, Asthma and Dehydration

I recently found a really interesting article about an experience and possible connections between Celiac Disease, Asthma and Dehydration. The article was published this past March on Celiac.com by an author named Anne Marie Dunphy. She goes into pretty great detail about her experience with Celiac Disease - it's an interesting read.

Her basic theory is that gluten digestion in a person with Celiac Disease is obviously a stress on the digestive tract. Couple that with the need for large amounts of water for gluten digestion. The result can lead to water being pulled from other parts of the body leading to localized dehydration. The body will begin to generate histamines to slow the dehydration. These excess histamines and localized dehydration in the lungs, can trigger an asthma attack if you are asthmatic.

After reading her post on Celiac.com, I did a quick search for some other articles on asthma and gluten. I found quite a few - Here, here and here. There is definitely a lot of information out there about the relationship between gluten and asthma.

If you care to find out more about asthma, check out the Asthma Fair this Saturday, May 2nd, 2009 at Wake Med Hospital in Raleigh. The event runs from 9am to 1pm and will feature Twin Cakes Bakery. Click here for more information from the Twin Cakes blog.

Celiac Disease and Fibromyalgia

I've done lots of reading about associated symptoms and diseases of Celiac Disease and have come across some articles where people were diagnosed with Fibromyalgia for years and then they were also diagnosed with Celiac Disease. The National Fibromyalgia Association defines the syndrome as...

a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities."

The symptoms are very similar to Celiac Disease. A recent study noted here indicated that 9% of the participants were originally diagnosed with Fibromyalgia and then correctly diagnosed with Celiac. With all the "Gluten Free Diet can cure this or that" in the news lately, I've seen some articles about people easing some symptoms of the syndrome by going Gluten Free.

The point is to let you all know that if you've been diagnosed with Fibromyalgia in the past, you may want to get tested for Celiac Disease. Their symptoms are similar.

Celiac Disease and Fatigue

Many people experience fatigue before their Celiac Diagnosis. It is a very common complaint and is a logical side-effect of malabsorption. If your body isn't getting the nutrients it needs to function, you'll feel tired, weak and unenergetic. After a successful diagnosis of Celiac Disease and some time spent on a Gluten Free Diet, your energy levels should improve. But what happens if you are still experiencing fatigue - even after several years Gluten Free? Check out the following article recently published on Celiac.com by Registered Nurse Wendy Cohen.

In the article, Wendy describes a situation where fatigue is still an issue after going Gluten Free. She suggests a possible issue with the body's adrenal glands could exist.

Although relatively tiny, the adrenals have a very big job. Adequate levels of the adrenal hormone cortisol are required by the body to help prevent inflammation and tissue destruction, keep blood sugars level, moderate nervous system responses, and attempt to maintain homeostasis, or the steady-state of balance in the body. Periodically experiencing incredibly painful episodes of inflammation and tissue destruction from an accidental exposure to gluten places a huge strain on the adrenals, including a sudden demand for high cortisol levels to help moderate the inflammatory response. Each time, the body is able to cope, but with each experience it may take longer for the adrenals to recover. When stress is prolonged, these high levels of cortisol must be maintained. And if there is no significant recovery period during which the adrenals can rest and replenish themselves, adrenal fatigue results.

She goes on to list several other auto-immune diseases that have been studied and proven to be linked to Celiac Disease - Diabetes affecting your pancreas, thyroid disorders and hepatitis affecting your liver. Wendy suggests that Autoimmune Adrenal Hypofunction and Autoimmune Hypo-Adrenalism are two possible related diseases to Celiac that have not been fully studied in the USA as of yet. Check out the symptoms of Adrenal Fatigue below as outlined in the article. Sound familiar?

Symptoms of Adrenal Fatigue
* Fatigue
* Depression and memory difficulties
* Sleep Disturbances
* Migraine Headache
* An increase in allergies or the development of new allergies
* Alcohol Intolerance
* Low Blood Pressure and Low Body Temperature
* Blood Sugar Regulation Problems (Hypoglycemia)
* Low Libido & Hormonal Imbalances
* Inflammation

Good information to know which establishes yet another link to an associated disease.

See my other posts about Celiac Disease and related symptoms or diseases here.

Celiac Disease and Depression

I have previously written numerous posts about Associated Diseases or Symptoms of Celiac Disease including Seizures, Dermatitis Herpetiformis (DH), non-Hodgkin's lymphoma (cancer), Restless Leg Syndrome (RLS), Type 1 (Juvenile) Diabetes, Thyroid Disease and Osteoporosis/Osteopenia. Let's add another one to the ever-expanding list; Depression.

Check out the following article from Celiac.com (written by Dr Vikki Petersen - Founder of HealthNOW Medical Center) on Celiac Disease/Gluten Sensitivity and Depression. Below is an excerpt from the article...

In a study examining blood flow to the brain, 15 patients with untreated Celiac disease were compared to 15 patients treated with a gluten-free diet for a year. The findings were amazing. In the untreated group, 73% had abnormalities in brain circulation by testing while only 7% in the treated group showed any abnormalities. The patients with the brain circulation problems were frequently suffering from anxiety and depression as well.

In addition to circulation problems, other research looks at the association between gluten sensitivity and its interference with protein absorption. Specifically the amino acid Tryptophan can be deficient. Tryptophan is a protein in the brain responsible for a feeling of well-being and relaxation. A deficiency can be correlated to feelings of depression and anxiety.

Useful Resources: Mystery Diagnosis on Discovery Health Channel

Ever watch that show called Mystery Diagnosis on Discovery Health? Every time I flip this show on I think in the back of my head that somebody has to be on here for Celiac Disease. Celiac Disease has over 300 symptoms, often times looks like other diseases and seems incredibly difficult to diagnose (average time of diagnosis in US is 10 years). Well, I recently stumbled on the story of little Eamon Murphy which originally aired in 2005.

Eamon originally began having some issues at 3 months old. His conditions got progressively worse and he began to fall behind developmentally. Problem was that no one thought Eamon had Celiac Disease - even though his own mother was diagnosed years earlier. Eamon's symptoms were not the typical ones thought of for CD - diarrhea, weight loss, failure to thrive, etc... Gluten was having a more neurological effect on him. He began to suffer from seizures at around age 3. His mother assumed that since the issues were not GI related like hers that it couldn't be Celiac - bad assumption. In fact it wasn't until she attended a lecture by Dr. Peter Green from the Celiac Disease Center at Columbia University that she really understood CD to be genetic and that it could cause numerous other symptoms. It took Eamon 4 years to get the proper diagnosis of CD.

This should serve as a reminder to you to get your immediate family members screened for Celiac - even if they are not showing the typical GI symptoms. There is a quote in the second video clip from Eamon's father that goes something like "Celiac Disease causes malabsorption issues - the potential is limitless on what it can do to your body". Gluten leaks from your intestinal track and is highly toxic to patients with Celiac Disease. Not only can it affect your gut, but also your skin, your brain and pretty much anywhere else.

Click here for Part I and Part II of the video on YouTube.

Dermatitis Herpetiformis - a.k.a. DH

The CSA defines Dermatitis Herpetiformis (DH) as an important associated disorder or complication of Celiac Disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in Celiac Disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "Celiac Disease of the skin" while CD is referred to as "Celiac Disease of the gut." Click here for more information about the symptoms of DH (including pictures).

Typically, DH can be characterized as an intensely itchy skin eruption distinguished by the formation of small papules or vesicles. The patient may perceive having red bumps and blisters. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the extensor surfaces of the body: over the elbows, knees, buttocks, scalp, posterior, neck, sacral (lower end of the spinal column) and shoulder areas. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth. Although its severity may vary, it persists indefinitely and is a lifelong condition. There are only a few patients in whom the disease remits for long periods of time.

DH was formerly described in literature as Duhring's Disease. It has a typical onset in the teenage years or in the third or fourth decades of life. In the U.S., the presence of diagnosed cases is estimated to be about 1 in 10,000 with a male/female ratio of 2:1. It is more common in whites and rare in people of African or Asian descent.

I was already "lucky" enough to be 1 out of 133 to have Celiac Disease. Now I am even more "lucky" - 1 out of 10,000! From what I have read, it is pretty rare to have both CD and DH - somewhere around 20% of CD patients also have DH. I was officially diagnosed with DH on Wednesday by a Dermatologist although I had suspected my elbow/knee skin rash was DH for many months now. The included picture is what my elbows look like about a week after eating Gluten. Same thing on my knees. In another week, the small blisters (which are extremely itchy) will turn to scabs and then eventually fade away. Why can't my luck translate into winning the powerball lottery which has a 1 in about 200 million occurrence? Guess I am not that lucky.

Regardless, the treatment for Celiac and DH are the same - lifelong Gluten Free Diet - so really nothing new for me.

Some questions I asked my Dermatologist...

Why do I have the DH rash after being Gluten Free for 8 months? - The skin can take up to 2 years or more to recover from Gluten ingestion after going Gluten Free. The intestines recover much faster.

Are there any medications to assist with DH? - Dapsone can be taken for this disease but has serious side-effects and you must be closely monitored while taking it. Taking a super potent steroid ointment like Clobetasol for about 2 weeks seems a little safer and should help clear up the rash and prevent the itching and burning but following a GF diet is the recommended approach for treating DH.

Are there any related diseases to DH? - Thyroid disease is most commonly associated with DH. Other autoimmune disorders that people with CD are at greater risk to develop include Addison' s disease, autoimmune chronic active hepatitis, Alopecia Areata, Graves' disease, insulin-dependent diabetes mellitus (type 1), myasthenia gravis, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and thyroid disease. This is not a complete list. Thyroid diseases and diabetes are the two most commonly associated diseases. It is not uncommon to have other skin conditions as well.

Anybody out there have DH and want to share their experiences?

Celiac Disease and non-Hodgkin Lymphoma

I've written in the past about the associated diseases and symptoms of Celiac Disease. Some of you may have already seen the following but I wanted to get it out there anyway. Celiac patients have a 5.35-fold increased risk of developing non-Hodgkin's lymphoma (cancer).

Researchers at the( National Cancer Institute) in Bethesda, Maryland, and the Karolinska Institute in Sweden conducted a study of more than 60,000 patients with lymphomas diagnosed in Sweden between 1965 and 2004. The following is the results of that study.

"Overall, we found persons with a hospital discharge diagnosis of celiac disease to have a 5.35-fold increased nonHodgkin's lymphoma risk," the team reports in the medical journal Gastroenterology. The risk of Hodgkin's lymphoma was "borderline increased" and there was no increased risk of chronic lymphocytic leukemia in celiac disease patients.

The risk of nonHodgkin's lymphoma in patients with celiac disease was increased 13.2-fold between 1975-1984, 7.90-fold between 1985-1994, and 3.84-fold between 1995-2004.

Individuals with a sibling affected with celiac disease also had a 2.03-fold increased risk of nonHodgkin's lymphoma.

Click here for the full article.

Gluten Free Diet Not Working? Refractory Celiac Disease

So what happens if you have Celiac Disease but the Gluten Free Diet does not improve your condition? You could have Refractory Celiac Disease which is a very serious and rare condition that occurs when going off Gluten does not stop symptoms or intestinal damage in the Celiac patient.

According to a recent article from Celiac.com, researchers are now proposing a new Staging model (similar to cancer stages) for Refractory Celiac patients which provides greater accuracy of prognosis. The new model looks at various prognostic factors and places patients into one of three stages at the time of diagnosis. Keep reading if you want the bad news for Refractory Celiac Disease (RCD).

• Stage One - Patients' 5-year survival rates of between 93% and 100%.
• Stage Two - Patients' 5-year survival rates of between 80% and 65%.
• Stage Three - Patients' 5-year cumulative survival rates of between 25% and 0%.

The study to drive out the new Staging scale followed 57 RCD patients over the course of a 5 year period. Fifteen of the 57 patients died within 2 years of being diagnosed with RCD. Most deaths were a result of refractory celiac disease, or to enteropathy-associated T-cell lymphoma (EATL). I think it is safe to say that the longer you have RCD the higher you will move through the Stages until your eventual death.

For those of you out there with Celiac but not with RCD, here is yet another warning to strictly follow your Gluten Free Diet for life. To me, RCD is what life would be like for the Celiac patient who decided to not follow a Gluten Free Diet. Either would result in the same high rate of mortality.

Celiac Disease and Restless Leg Syndrome

Anyone out there with Restless Leg Syndrome (RLS) knows how difficult a condition it is to live with. RLS is a neurological condition in which individuals experience an irresistible urge to move their legs. It often times interferes with sleeping which leads to all sorts of other trouble.

RLS can be caused by having low iron levels (among other mineral deficiencies) and a recent study has linked RLS as yet another symptom of Celiac Disease (how many symptoms are there now - I can't keep track). The study looked at 4 RLS sufferers who were diagnosed with Celiac. They were placed on a Gluten Free diet and their RLS significantly improved.

See more at Sure Foods Living.

Word of Caution: Inaccurate Vitamin D tests at Quest Diagnostics Labs

If you are like most diagnosed Celiacs, you've had your nutrient levels checked via a blood test. If you have had your Vitamin D levels checked within the last 2 years at a Quest Diagnostics Lab then you may want to keep reading. I think they may have been too busy counting the $5 Billion in sales they had over the first nine months of 2008.

The company (the nation's largest medical lab) has acknowledged that their Vitamin D tests have been inaccurate. The consequences are..

An erroneously high result might mean patients would not take vitamin D supplements when perhaps they should, doctors said. And an erroneously low test result might lead in rare instances to a toxic overdose of vitamin D. When the Quest tests have been inaccurate, the reading has typically been too high, although not in all cases.

Quest blames an increase in demand for the test (while at the same time switching to a new testing method), using sophisticated equipment, using faulty equipment, and the fact that many of their labs did not following proper procedures for the errors. Did they get any tests right? Who knows.

Dr. Wael A. Salameh, the medical director for endocrinology at Quest’s most sophisticated laboratory, said the inaccurate results represented fewer than 10 percent of all the vitamin D tests done by the Quest from early 2007 to mid 2008.

I myself have had my Vitamin D levels taken and they were found to be low. I was then diagnosed with Osteopenia after having a bone density scan. My test was conducted at LabCorp though. If you are like me but have not been taking high doses of Vitamin D daily to up your levels after going Gluten Free, then your bone problems could be getting worse.

Like we need anything else to worry about! It's good to know that the FDA has decided NOT to regulate these diagnostic tests either. What do they actually do?

Meanwhile the F.D.A. is considering increasing its role in regulating diagnostic tests. Right now test kits sold to labs, hospitals and doctor’s offices have to be approved by the agency. But tests developed and offered by a single laboratory, like the Quest vitamin D test, do not.

See the following NY Times article for more information.

Click here for Quest Diagnostics Web site.

See below for Raleigh locations...
Raleigh-West 3200 Blue Ridge Rd Suite 200
Raleigh-Northeast 11001 Durant Rd
Raleigh-Northwest 8300 Health park Suite 223
Cary 530 New Waverly Place

Word of Caution: Osteoporosis drugs linked to esophageal cancer

There are many Celiacs out there who have developed Osteopenia/Osteoporosis (bone loss) as a result of their Celiac Disease. Some folks are then put on a bone mass building prescription drug like Fosamax, Actonel, Didronel or Boniva. The drugs aim to treat bone-weakening Osteopenia/Osteoporosis by increasing bone mass.

A recent study by the US FDA now shows an increased risk of esophageal cancer in patients taking these types of so-called bisphosphonate drugs.

See the following article for more information.

Celiac Disease and Diabetes

There has been a lot of news over the last few days about the genetic link between Celiac Disease and Diabetes. Recent studies in the UK have shown the the genetic traits for CD and Type 1 (Juvenile) Diabetes overlap to a much greater extent the previously thought.

Both CD and Diabetes are autoimmune disorders which require both the genetic makeup and an "environmental factor" which makes the genes active. The research suggests that active Celiac can be an environmental trigger for Diabetes.

Diabetes occurs when your pancreas stops producing insulin which is a hormone that allows your body's cells to take in glucose from food for energy.

Check out the symptoms for Type 1 Diabetes here.

Check out some of the articles about this from other sources below.
Celiac-Disease.com
Celiac.com
Medicinenet.com
MedicalNewsToday.com
TheSavvyCeliac.com

Celiac Disease and Thyroid Disease

Great! - Something else to watch out for...

From the The Journal of Clinical Endocrinology & Metabolism...

Risk of Thyroid Disease in Individuals with Celiac Disease

Background: It has been suggested that celiac disease is associated with thyroid disease. Earlier studies, however, have been predominately cross-sectional and have often lacked controls. There is hence a need for further research. In this study, we estimated the risk of thyroid disease in individuals with celiac disease from a general population cohort.

Methods: A total of 14,021 individuals with celiac disease (1964–2003) and a matched reference population of 68,068 individuals were identified through the Swedish national registers. Cox regression estimated the risk of thyroid disease in subjects with celiac disease. Analyses were restricted to individuals with a follow-up of more than 1 yr and with no thyroid disease before study entry or within 1 yr after study entry. Conditional logistic regression estimated the odds ratio for subsequent celiac disease in individuals with thyroid disease.

Results: Celiac disease was positively associated with hypothyroidism (4.4 times more likely), thyroiditis (3.6 times more likely) and hyperthyroidism (2.9 times more likely). The highest risk estimates were found in children (hypothyroidism 6.0, thyroiditis 4.7 and hyperthyroidism 4.8).

Conclusion: Celiac disease is associated with thyroid disease, and these associations were seen regardless of temporal sequence. This indicates shared etiology and that these individuals are more susceptible to autoimmune disease.

Symptoms of Thyroid Disease include...
* Fatigue
* Abnormal menstruation
* Weight gain or loss
* Dry and coarse skin & hair
* Depression
* Intolerance to cold
* Irritability
* Muscle weakness
* Tremors
* Vision problems (eye irritation)

Useful Resources - After Diagnosis Follow-up - Nutritional Deficiencies

After I was diagnosed with Celiac Disease this summer, my Doctor informed me that several follow-up tests should be performed to verify if I had any Nutritional Deficiencies. My doctor ordered a few blood tests called "CBC" or Complete Blood Count and a test for Vitamin D levels.

From the results of these tests, my Doctor determined that my Vitamin D levels were too low. Low levels of Vitamin D can lead to many issues in the human body. In Celiac's, it could lead to Osteoporosis/Osteopenia. This ended up being the case for me.

My Doctor did several things as a result of this Vitamin D deficiency.

1. Wrote a prescription for Vitamin D for 6 weeks. The dosage was 50,000 IU. The normal suggested dosage for adults is 400 IU per day. This was to boost as much Vitamin D into my system as quick as possible to try to make up for the deficiency.
2. Ordered me to undergo a Bone Density Scan Test also know as a "Bone Densitometry Test" and/or dual-energy x-ray absorptiometry (DXA or DEXA) . See more about this test here.
   

I had the Bone Density test here in Raleigh at Wake Radiology in their West Raleigh office near Rex Hospital (West Raleigh Office - 4301 Lake Boone Trail - First Floor -Raleigh, NC 27607 - Ph 781-6707 - Mon-Fri 8am-5pm). The procedure took about 30 minutes from start to finish and was completely painless (other than hearing my diagnosis from the technician). Normally, 60 year old women are getting this test so they were a bit taken back to see me and my results. Regardless, I had the following areas scanned: wrists, forearms and ankles in addition to the normally scanned areas of the spine and hips. Patients with Celiac Disease will often see loss of bone density due to malabsorption in the small bones of the body first so it is important to make sure these areas are included in the scan.

The test results will be listed as follows:

• T score — This number shows the amount of bone you have compared with a young adult of the same gender with peak bone mass. A score above -1 is considered normal. A score between -1 and -2.5 is classified as osteopenia, the first stage of bone loss. A score below -2.5 is defined as osteoporosis. The T score is used to estimate your risk of developing a fracture.
• Z score — This number reflects the amount of bone you have compared with other people in your age group and of the same size and gender. If this score is unusually high or low, it may indicate a need for further medical tests.

My results were a T score of -2.4 which is technically classified as osteopenia, but very close to osteoporosis. One Standard Deviation difference in a T-score equals a 10-15 percent decrease in bone density. For example, a person with a T-score of -2.5 has a 10-15 percent lower bone density than a person with a T-score of -1.5. When my doctor reviewed the test results, he called me to recommend I take at least 800 IU daily of Vitamin D and schedule a follow-up appointment with him in 6 months. As a result, I am taking a Gluten Free Daily Multivitamin (found at Whole Foods) in the morning which contains 400 IU Vitamin D and then another 400 IU Vitamin D pill (found at Lowe's foods) in the evening. FYI - Vitamin D only pills are pretty difficult to find in my experience.

The Good news - my Doctor informed me that as time passes and I remain on the Gluten Free Diet, my Nutritional Deficiencies should disappear and my bone density issues should be reversible.

If you are a newly diagnosed Celiac and your doctor has not ordered any follow-up tests, then you should either demand they do or switch doctors. The results of Nutritional Deficiencies is not something to mess around with as you can see in my case.

For more information on Osteoporosis, please visit the National Osteoporosis Foundation website.