Genetic links to celiac disease identified: Commentary

Well, I thought we had already established that celiac disease was genetic, but just a couple of days ago it was announced that according to London scientists,  new genetic links to celiac disease have been discovered. An international team of researchers found close to “40 different inherited risk factors which predispose to the disease” (DNA India, boldface added).

We all know that genetics are pretty much entirely responsible for our physical makeup, but I find it interesting that there are so many risk factors that make celiac disease something for which we may be “predisposed.” Just the fact that there are so many millions of people around the world that have CD fascinates me, and it is relatively new disease, historically speaking… rumor even has it that it has something to do with the genetically modified super-gluten that has crept into almost all mainstream food products.

In her book "Harvest for Hope: A Guide to Mindful Eating", famed primatologist Jane Goodall said of genetically modified foods:  "We simply do not know the long-term effects of genetically altering foods" (2006, p. 46).  She also sadly pointed out that "The children of North America have now become the world's lab animals on whom to study the long-term effects of eating GM [genetically modified] products" (p. 62).  We are predisposing ourselves, I often think.

The British-led team of medical researchers identified “four aspects of immune system disturbances that lead to the development of celiac disease” (United Press International).

"We can now shed light on some of the precise immune disturbances leading to coeliac disease. These include how T cells in the body react to toxic wheat proteins, how the thymus gland eliminates these T cells during infancy, and the body's response to viral infections.

"We now understand that many of these genetic risk factors work by altering the amounts of these immune system genes that cells make.

"The data also suggests that coeliac disease is made up of hundreds of genetic risk factors, we can have a good guess at nearly half of the genetic risk at present" (Prof. David van Heel, professor of gastrointestinal genetics at Barts; DNA India; Nature Genetics journal, boldface added).

Toxic wheat proteins…. I’m all for the advancement of science and particularly in medicine, but when our food supply becomes toxic to our own bodies (at least as our body sees it), it is time to stop tampering with what goes into our bodies and start focusing on preventative medicines and treatment, that are both natural and non-toxic, regardless of what levels the FDA deem safe. 

It is good news that the scientific and medical communities are spending the time in research considering celiac disease is becoming so prevalent around the world. According to Reuters, these new findings may help “speed the search for better ways to diagnose and treat the gluten-intolerance disorder” (Reuters.com).

The bad news is that the “study also shows that there is substantial evidence to indicate a shared risk between the gene associated with coeliac disease and many other common chronic immune mediated diseases” including diseases such as type 1 diabetes and rheumatoid arthritis (DNA India, Reuters).

With my own research, I already know that CD is caused by an abnormal immune response to gluten, which can be found in wheat, rye, and barley products and can be hidden just about anywhere —from medicines and vitamins to lip balms and lipsticks. I know that the reaction causes damage to the lining of the small intestine, essentially flattening the villi, which are the tiny, hairlike projections that normally stand upright (mental image: a field of grass moving with the breeze). Each tiny little villi absorbs nutrients which then get absorbed into the blood stream. When the villi are flattened, the body can no longer properly absorb nutrients.... and you may never know it is happening until the damage has already been done.

You may be eating to your heart’s content, but as long as your body cannot receive nutrients on a cellular level, your body will be literally starving to death. This is why the disease affects so many organs and systems in the body—it affects your entire body. You may end up with weakened bones, anemia, chronic fatigue syndrome, weight loss or weight gain, or any one or combination of over 300 symptoms.

In simplest terms for me, gluten is the alien that created crop circles in my gut, substantially reducing my nutrient harvest. There is no cure for it and that the only treatment is a life-long diet free of gluten and avoiding all hidden sources of gluten.  So I have CD.  I live, and I move on.  Do I miss all those bread products and over-processed snacks and addiction to sugar?  Actually.... surpisingly, no.  I don't.  What's to miss?  Horrible stomach pain, a weakened heart, failing organs and a reduced standard of health (i.e., living)?

I think not.  Keep plugging away, researchers!

Celiac and Vitamin Supplements

One of the questions that I have been mulling over, is whether I am wasting my money in continuing to take vitamin supplements if CD has made my body unable to absorb nutrients.

For the past several years, I have taken several vitamin supplements rather than one multivitamin. I have regularly taken Iron, Evening Primrose with Black Currant Seed Oil, CoQ10-100, Biotin, Resveratrol, and Lithium Orotate (5 mg), and a variety of others depending on my budget (Licopein, for example). When I became very ill in late October, I stopped taking all supplements, stopped taking any OTC medicines whether for pain or allergies, and also completely altered my diet, eliminating diet caffeine sodas (and all sodas), fatty or fried foods, and sugar.

Being overwhelmed with fatigue for the past couple of months, I have started taking iron supplements again, and would like to go back to my other supplements as well. For some reason, I am thinking that these extra vitamins may be what kept me somewhat healthy during such stressful times. But am I just throwing my money away if my body can't absorb the nutrients anyway?

I did some research and was directed back to the website I have listed here in "Helpful Links," Celiac.com. I found an article by Jefferson Adams called "Do Vitamin Supplements Benefit Celiac Patients?" (03/10/2009). Adams states that "B-vitamin supplements are helpful in raising vitamin B6, B12 and folate levels and in reducing homocysteine levels in people with celiac disease." It also goes on to say that people with CD may have higher rates of hyperhomocysteinemia-- which I had to look up-- due to low levels of folate and vitamin B12.

Hyperphomocysteinemia (according to my old nursing school books) is simply too much homocysteine in the blood. Basically, homocysteine is a protein waste product--in fact it is an amino acid itself (proteins are amino acids), and it creates little 'irregularities' inside the surface of our blood vessels. The problem is that these little irregularities tend to snag fats which in turn begin to build up in our arteries. Too much homocysteine can lead to coronary disease, stroke and peripheral vascular diseases. In fact, it can damage the inner lining of the arteries and in turn may end up causing blood clots.

The American Heart Association says that:

"Several studies have found that higher blood levels of B vitamins are related, at least partly, to lower concentrations of homocysteine. Other recent evidence shows that low blood levels of folic acid are linked with a higher risk of fatal coronary heart disease and stroke."

Adams (Celiac.com) reminds us that:

"The best way to prevent Hyperhomocysteinaemia is to eat things that contain B6, B12, and folate such as potato, greens, beans and fish."

In his article, Adams states that a team of researchers set out to evalutate the effectiveness of vitamin supplements for B6, B12, and folate on homocysteine levels in people with CD (check Celiac.com for specifics). What they found was that those with CD who used vitamin supplements had higher blood levels of vitamin B6, and folate, and that they also showed lower levels of plasma homocysteine.

Ultimately, the study "confirms earlier studies suggesting that both the presence and severity of celiac disease determined homocysteine levels" and "the regular use of supplemental B vitamins resulted in higher levels of serum vitamin B6, folate, vitamin B12 and lower levels of plasma homocysteine in patients with celiac disease" (Adams).

So I do believe I will continue taking my Biotin supplement because it also contains vitamins B12, B6, B2, and B1 and others. According to Adams, B vitamins seem to offer some protection against the death of the villi in my intestines. It could very well be that I didn't develop the adverse affects of CD earlier because I have had these supplements in my system for the past few years. As my budget waned through this financially stressful year, I was taking fewer supplements, often skipping days without them. And then my body said "OK, can't do it anymore. Wake up and recognize the problem."

Today I have an appointment at the clinic, and will present my ideas and lifelong symptoms. Until now, I had never made the connection between my health and anything wrong because to me it was normal-- it was all I knew. I adapted and moved on, just like every other kid with something wrong. And because the symptoms of CD are so diverse, it is no wonder that nobody else caught it earlier, either.
If you are interested in where I buy my vitamin supplements, I buy them from Andrew Lessman's ProCaps Laboratories. I like these supplements because they are all natural with no additives or fillers and contain no gluten, etc. They can be purchased on Autoship, which means they will be shipped to me regularly, or I can delay and change the shipment times. And the best part is that they are affordable.

Gluten-Free: Seeing the Benefits

I have found it amazing that my mental energy seems to be through the roof these past couple of days. If it weren't for some slight stomach soreness, I'd be buzzing around the house like I'm on some kind of caffeine high. Is mental clarity a benefit of a gluten-free diet?

I'd also like to say I'm in a much better mood because I have been so irritable in the past (attributing it to stress and age-related problems). Perhaps my mood is elevated because I am finally feeling like I might have some answers. Or perhaps it is because I am not feeling sick and miserable and like my life is coming back, little by little.... or maybe I never really had control of my health in the first place, and so this is a new feeling. For lack of a better description, my insides feel like they are at peace.

The more I have researched Celiac Disease, the more various little bits of information throughout my life are beginning to fit into the picture. When I was a child, for example, I was always the scrawny one in my class. I was so skinny, I was usually one of the smallest. I was horrible at P.E. and the last picked for any team, because I had no muscular strength. I was not only the scrawniest kid, but also the weakest kid-- so much so, that my classmates often poked fun at me.

As a young adult, I was always told that my skin problems were a vitamin deficiency-- the skin on my fingertips would peel, or there would be some sort of rash on my arms or legs. I went to a dermatologist once to get a definitive answer once and for all. He came in to the room greatly bothered for some reason or other, took one look at my fingers, and said "wear gloves" and left.

During my pregnancies I was always on prenatal vitamins, but still had trouble keeping my iron levels up. And at my post-pregnancy checkups, I was told to continue vitamin supplements because I apparently still needed the folate and the iron. One doctor retested my levels and asked if I was taking supplements. When I told him yes, he told me to go back on prenatal vitamins because they were in larger amounts. Over the years, I have been told from one doctor to another to take iron supplements. To the best of my knowledge, I have not been tested for other vitamin deficiencies.

Some may wonder, what are you going to do if you get tested and it turns out you don't have CD? Well all I can say is that I know what works for me at this time in my life, and that is a gluten-free diet. Perhaps it is simply an allergy to wheat: the treatment is pretty much the same-- going gluten-free. If it is another kind of stomach disorder, at least I still know what makes it feel better-- at least for now. And I will continue my daily life, one ailment or symptom at a time, just as I always have in the past. I've always believed we must learn from our life, and live. Look for the bright spots, no matter how small.

Researching Celiac Disease

According to the National Digestive Disease Information Clearinghouse National Institute of Health), Celiac Disease is genetic, meaning it runs in families.

I received an email from my mother earlier today, and she happened to mention that one of my sisters had been to visit my parents over the weekend. My sister, who has been dealing with digestive problems (and liver), became ill after eating at a business dinner party the night before. Usually very careful about what she eats, something was slipped into her food that may have had traces of something to which she is very sensitive or allergic. Her son (my nephew) has also been suffering from something that sounds like colitis.

My brother was recently diagnosed with ulcerative colitis, and my mother has suffered with chronic digestive problems for many years. Her cousin also has a very restricted diet, and the list of relatives with digestive problems goes on. She was thinking there may be a genetic link that makes us all susceptible to these types of problems. I believe there is, and I want to know if it is Celiac Disease, or gluten intolerance (treated the same).

Though people may test positive for CD, they don't always develop a full-blown version. According to the source above, "Sometimes the disease is triggered -- or becomes active for the first time-- after surgery, pregnancy, childbirth, viral infection, or severe emotional stress."

Well, that kind of says a lot for my personal story: My husband suffered a massive heart attack early in the year, and we almost lost him. It was so bad it took 12 shocks to stabilize the heart, and he spent a week in the ICU. We had no incoming money and no savings to rely on, and no health insurance. During the following months we encountered one serious setback after the other. Every week I thought I was going to have a nervous breakdown. After the heart attack, the cardiologist told me I might need help with Post Traumatic Stress Disorder. Maybe my level of stress triggered my digestive issues.

The same source also lists 12 other symptoms that can accompany CD:

unexplained iron-deficiency anemia

fatigue

bone or joint pain

arthritis

bone loss or osteoporosis

depression or anxiety

tingling numbness in the hands and feet

seizures

missed menstrual periods

infertility or recurrent miscarriage

canker sores inside the mouth

An itchy skin rash called dermatitis herpetiformis

Ever since my trip to the ER in late October I have been telling doctors and nurses that my extremities were tingly and numb!! They usually look at me in a very puzzled way. Only one nurser practitioner brought up the possibility of a wheat allergy or Celiac Disease. I have seven of those symptoms listed above. Dental enamel defects are also common (something I've had all my life). If that is not enough, when I was small people were always telling me I was malnourished. Even into adulthood doctors would tell me to take vitamins because I always seemed deficient, and had a hard time keeping my iron levels up.

On top of that, in an effort to find out what happened to my "missing periods" (as listed here in the symptoms) I underwent an endometrial biopsy just yesterday. I'd say it is time to get back to that thought of possible CD again.

Other health problems that people with CD may have include:

• type 1 diabetes
• autoimmune thyroid disease
• autoimmune liver disease
• rheumatoid arthritis
• Addison's disease, a condition in which the glands that produce critical hormones are damaged
• Sjogren's syndrome, a condition in which the glands that produce tears and saliva are destroyed.
  
  

  
  "Long-term complications include malnutrition-- which can lead to anemia, osteoporosis, and miscarriage, among other problems-- liver diseases, and cancers of the intestines."
  

Currently, I am faced with the blood tests. In order to test for CD, I will have to return to a gluten diet, which I am not looking forward to, but willing to do to get a definitive diagnosis.


The NDDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Please visit the website for complete information.