Nadine Grzeskowiak, RN – Page 11

Fibromyalgia

A book titled The Gluten Effect makes a few interesting points. In one study of 123 patients with fibromyalgia, 73% were suffering from IBS. While 2% of the population has fibromyalgia, 9% of patients with celiac disease have the condition, much higher than the normal population.

This link actually argues that fibromyalgia is NOT associated with celiac disease because those with fibromyalgia have been found to have decreased serotonin, the argument being that there is a biological underlying issue to fibromyalgia (low serotonin) that cannot be attributed to celiac disease. BUT, in a study from 2006, it was found that those with celiac disease absorb less of the amino acid tryptophan. Tryptophan is the precursor to serotonin and decreased levels of this amino acid are directly related to decreased levels of serotonin (Margutti P, Delunardo F, Ortona E.). Coincidence? I don’t know.

What are the symptoms of fibromyalgia? Fatigue, insomnia, chronic pain, muscle and joint pain, numbness, tension/migraine headaches, memory/cognitive difficulties. Let’s look at some of these in Cleo Libonati’s book, Recognizing Celiac Disease:

75% of CD patients complain of fatigue at their time of diagnosis (including both Nadine and myself). This is primarily due to nutritional deficiencies: iron, magnesium, protein and vitamin C.

Insomnia is due to the reduction of the synthesis of neurotransmitters in the central nervous system. This can result from multiple malabsorptions in CD: vitamin B₆, B-complex, magnesium, thiamin, calcium, EPA and especially tryptophan (remember this one? It is needed to make melatonin AND serotonin!).

Muscle pain is common in CD, resulting from multiple vitamin and mineral deficiencies: thiamin, vitamin C, E, K, niacin, pyridoxine, vitamin B₁₂, magnesium or selenium.

Joint pain, or arthritis, is caused by inflammation damaging joints or connective tissues. It is an autoimmune condition, and is thought to have an outside cause. Celiac disease is in fact an autoimmune condition that causes inflammation throughout the body. In celiac disease, when your body is exposed to gluten, in produces antibodies against itself, known as tissue tranglutaminase (TTG for short). These can cause several autoimmune conditions to occur, one of which is arthritis and pain in the joints. Furthermore, there are several deficiencies that can lead to arthritis. Omega-3 deficiency is found to exacerbate psoriatic arthritis, though the reason is unknown. Vitamin C deficiency can cause rheumatic pains in the legs and can cause arthritis that often mimics rheumatoid arthritis.

In a study of patients with celiac disease and migraine headaches it was found that 64.5% had late on-set celiac disease, showing that even though there is a correlation, it might not be due to deficiencies. However, in the remaining 35.5% with childhood onset celiac disease, malabsorption of folic acid has been linked. Migraines are often the result of reduced blood flow to the brain. A gluten free diet has been shown to normalize this blood flow leading to improved/resolved migraines. Just a personal interlude here. While I don’t suffer from migraines, it is something that runs in my family on my maternal side: my sister, grandmother and uncles. I have two genes for celiac disease, one from my mother, increasing the chance that the relatives on that side have the gene, too. While most haven’t gone gluten free yet (I’m still working on them), my sister has. Her mind splitting migraines, that have existed since she was six, have virtually disappeared in the last 6 months that she has been on a gluten free diet.

References

Hoggan, R. (1996 , July 26). Fibromyalgia and celiac disease. Retrieved from http://www.celiac.com/articles/117/1/Fibromyalgia-and-Celiac-Disease—By-Ronald-Hoggan/Page1.html.
Libonati, C. (2007). Recognizing celiac disease. Pennsylvania: Gluten Free Works Publishing.
Margutti P, Delunardo F, Ortona E. Autoantibodies Associated with Psychiatric Disorders. Current Neurovascular Research. January 2006; 3: 149-157.
Petersen, V, & Petersen, R. (2009). The Gluten effect: how “innocent” wheat is ruining your health. True Health Publishing.

Gluten Free Primer

The gluten free diet can seem overwhelming at first, but with some practice and some simple first steps, you will be on your way to a healthier life. As you start to feel better with your new lifestyle, you will see that the gluten free diet really does become easier with time.

Avoid all gluten containing foods.

This includes, but is not limited to wheat, rye, barley, malt, spelt, kamut, triticale, couscous, wheat starch, beer, oats, pasta, breads, and sweets.

Beware of hidden sources.

Gluten can be found lurking in candies, soy sauce, deli meats, cheeses, envelopes, stamps, chapstick, cosmetics, play dough, toothpaste, mouthwash, medications, vitamins and more.

Check all labels, often.

Many processed foods purchase their ingredients from the cheapest source. That means those chips you love with corn starch in them one month, may contain wheat starch the next. Make sure you check labels every time you purchase packaged food and call the manufacturer if you are unsure about an ingredient. Packaged items claiming to be “gluten free”, but processed in facilities that contain wheat should be avoided.

Check your personal hygiene products.

This is a controversial issue and many healthcare professionals will tell you that your personal hygiene products don’t matter. The Gluten Free RN disagrees. If you have dermatitis herpetiformis, there are small tears in your skin. Putting gluten containing lotions on your skin is like pouring gluten directly into your blood stream.

Check out Dessert Essence and Gluten Free Savonnerie for gluten free brands.

Clean out your kitchen.

Empty your cupboards and give the gluten containing products away. Clean out the utensil drawer. Replace your wooden cutting boards and spoons, your toaster, sponge, and bread machine. If you MUST keep gluten containing food in your house, put it in a separate cupboard on a different counter and away from the rest of the food.

Be aware of cross contamination.

This is especially important if you share the house with gluten-consuming family members. We had a patient once complain that her peanut butter was making her sick. No, it was the breadcrumbs in the peanut butter from her son double dipping his knife while making sandwiches. Ideally, you will have a gluten free kitchen. If that is just not possible, have clearly labeled separate containers for butter, mayonnaise, peanut butter, jelly, honey and anything else that you may need to spread on bread. Separate utensils and sponges and a different toaster are also important.

Furthermore, flour is airborne. If anyone is baking in your house, it is very likely that the flour has gotten onto your gluten free area. You will need to re-sanitize before eating.

Be careful eating out, even at restaurants that have gluten free menus. If they do not have a separate kitchen and are preparing gluten containing items as well, it is very likely that your dish has been contaminated. Avoid anything fried, as they probably fried croutons, onion rings or breaded items in the same oil. Bread may have been grilled in the same area that your chicken breast is on, cut with the same utensils or placed on the same counter.

Myths and Misconceptions

Myth: Children “grow out” of celiac disease.

Fact: Celiac disease is chronic. If you have ever been diagnosed with celiac disease, you will need to avoid all gluten for life.

Myth: You can be “cured” of celiac disease and eat gluten again.

Fact: Celiac disease is chronic and cannot be cured, despite what a physician, chiropractor or alternative health doc may tell you. If they tell you that you will be able to eat “a little bit every once in awhile” after their treatment- they are lying. Turn around and run.

Myth: Only really skinny people have celiac disease.

Fact: Patients with celiac disease come in all shapes and sizes. Damage to the small intestine causes deficiencies and malnutrition. Malabsorption of fat in celiac disease is especially common leading to inadequate amounts of the fat soluble vitamins A, D, E, and K. Calcium and magnesium absorption are also hindered along with essential fatty acids- linoleic and linolenic acid. These deficiencies lead to a feeling of starvation, stimulating appetite. Furthermore, low energy and fatigue, two common symptoms of celiac disease, inhibit motivation to exercise. A gluten free diet in obese individuals with celiac disease commonly leads to a 5 to 8 pound weight loss within the first week! So ditch your notion that going gluten free doesn’t apply to you and your spare tire.

Myth: In order to have celiac disease, you must have diarrhea.

Fact: Have you heard of the “iceberg of celiac disease” yet? The basic premises is the classical symptoms of celiac disease, diarrhea, bloating, and weight loss make up that tiny tip of the iceberg above the water. However, we now know that celiac disease has over 300 associated symptoms and conditions, making it particularly difficult to recognize. Constipation, neurological disorders, fatigue, weight gain, migraines, autoimmune diseases, ADHD, autism and fatty liver disease are just some of the issues making up the huge base of the iceberg under the water.

Myth: It’s an allergy to wheat.

Fact: Allergies are caused when your immune system overreacts to an environmental factor most people can tolerate, producing IgE antibodies to the food. IgE antibodies then bind to the allergen causing immune mast cells to destroy it, releasing histamine in response. The histamine is responsible for the itching, swelling, redness and/or cramping that then occurs. Wheat is considered one of the top 10 allergens, along with soy, dairy, fish and eggs. Allergies lead to quick, defined responses and are something that can be outgrown.

Celiac disease, on the other hand, is an autoimmune disease and can’t be defined in such a cookie cutter fashion. Exposure to gluten causes the immune system to produce antibodies to the protein gliadin as well as auto-antibodies. These auto-antibodies mistakenly damage specific organs and tissues. Common targets of the auto-antibodies in celiac disease are the small intestine, the insulin-producing islet cells of the pancreas, and the nervous system. There are over 300 associated symptoms to celiac disease and reactions to gluten usually do not occur immediately.

Myth: It doesn’t matter if my personal products have gluten in them.

Fact: The information available to this question is completely inconclusive. It has been argued that the gluten protein is too large to be absorbed through your skin. The Mayo Clinic in fact, specifically talks about how gluten in your skin care products does not matter, and suggests that any reaction to such products is only due to an underlying allergy, such as to wheat. However, those with skin rashes like dermatitis herpetiformis have tiny micro-tears in their skin. By putting on wheat germ oil or triticale containing products, they are essentially pouring gluten directly into their blood stream.

I have seen reactions to gluten containing skin products in several of my clients, including myself, over the years. It is my opinion that living gluten free means replacing your personal products as well. Try Gluten Free Savonnerie or Desert Essence if you are interested.

Myth: Celiac disease only affects your gut.

Fact: Dermatitis herpetiformis, insulin dependent diabetes, migraine headaches, osteoporosis, depression, ADHD, rickets, hepatitis, brain atrophy, infertility, thyroid imbalance, cardiac abnormalities, lymphoma, and bronchiectasis are just some of the over 300 symptoms associated with celiac disease. Every organ and tissue in the body can be affected by gluten.

Myth: Celiac disease is common in Europe but rare in the United States.

Fact: Just because you don’t see something does not mean it doesn’t exist. Celiac disease is diagnosed much more in Europe than in the United States. The prevalence of celiac disease in both the US and Europe is currently estimated at about 1%. The Gluten Free RN suspects that this estimate will continue to increase in the next few years.

Myth: Only white people get celiac disease.

Fact: A study by Dr. Carlos Catassi found that 5.6% of Saharawi children had elevated endomysial antibodies, a common marker of celiac disease with 100% specificity. Celiac disease has been reported in Southern Asia, the Middle East, Brazil, West and East Africa, and in South American Indians in Chile. Celiac disease affects all humans, regardless of race, gender or age.

Myth: My test was negative so I don’t have celiac disease.

Fact: One negative test for celiac disease does not rule you out. First, these tests can give a false negative (see Serological Test). Second, you must be on a gluten containing diet to have a positive test. Third, levels of antibodies in the blood can be cyclic, meaning a patient can have a negative test one month and a positive test the next. Plus, just because you don’t have celiac disease now, that does not mean you won’t get it in the future. Dr. Karin Larsson in Sweden recommends screening children with type 1 diabetes for celiac disease every year for at least 3 years. If you suspect celiac disease, Gluten Free RN suggests you do the same even if your doctor said you are “ruled out”.

Myth: Gluten free food doesn’t taste good.

Fact:It does. Just last night I had chips and salsa, lamb chops with mashed potatoes, and bananas foster over vanilla ice cream. We have been known to eat gluten free fish and chips, cupcakes and cinnamon rolls here at the Gluten Free RN office. I believe that this comment stems from ignorance of what the gluten free diet contains and misconceptions that gluten containing bread needs to be at every meal. It is true, gluten free alternatives to baked items have come a long way and to those who endured the gluten free “canned bread” days of the 1950s- I apologize. But, if you think you won’t eat well on a gluten free diet I challenge you to stop by Andina’s in Portland or Living Earth Bakery in Corvallis. Bon Appétit!

Myth: The gluten free diet is expensive.

Fact: It can be. Yes, gluten free breads do cost more than gluten containing ones, and tapioca and rice flour cost more than wheat flour. In the beginning a lot of people replace their gluten containing foods with gluten free alternatives, which usually cost more. However, there are some tricks that can help you keep these costs down. Make your own breads with a bread maker and buy the “flours” from Big River Grains. It may take awhile to find a good recipe but the warm smell of freshly baked GF bread is worth it. You may realize that you don’t need these packaged alternatives after all. Experiment with other gluten free starches as alternatives to bread at meals. Rice is low cost and easy to prepare. Quinoa is delicious. Even potatoes are versatile, cheap and familiar.

Myth: The gluten free diet is a fad diet.

Fact: True, there have been some claims lately about gluten free as a new weight loss miracle. For some it is, but for others who are underweight or average weight going gluten free have no effect, or actually lead to weight gain. Mostly, I hear this comment a lot from people who have noticed words like “celiac” and “gluten” everywhere recently. I think it is wonderful! The United States is finally recognizing one of the most common autoimmune diseases and taking note that it can actually be completely controlled by diet. This is hard for our Western medicine brains to wrap around, but until are diagnosis rates increase from 3% to 100% in the estimated 1 out of 100 Americans with celiac disease, you will continue to see this “fad diet” increase in popularity.

Quit Gluten

Of course, there is an easier way to test whether you are sensitive to gluten. Going on a completely gluten free/casein free diet for at least six weeks.

Casein is the protein found in dairy. It is similar to gluten and has been found to cause an adverse reaction in those who already have villous damage. Therefore, eliminating dairy from your diet for at least the first six weeks may help promote intestinal healing.

So, six weeks on a gluten/casein free diet. Even if your tests are negative for celiac disease, you have the option of trying a gluten free, dairy free diet for at least 6 weeks to determine if your symptoms improve or resolve altogether. This is referred to as a clinical trial. For many people, this is long enough to start to recover from bodily damage caused by gluten consumption. However, there are some people that require a longer period on a gluten free and dairy free or Paleo type lifestyle in order to feel better. Remember, it takes at least 6 months to a year to heal the intestinal lining.

The Stool Test

Dr. Kenneth Fine at Enterolab has developed a stool test to measure gluten sensitivity. This test requires collecting a stool specimen from the comfort of your own home and mailing it on to Texas. The specimen is then tested for anti-gliadin IgA and anti-tissue transglutaminase IgA. IgG is not tested, as it is not measureable in the stool.

Dr. Fine argues that the stool analysis is much more accurate than serological tests. In his own research he has found that 64% of patients with microscopic colitis have HLA-DQ2, however very few of them, only 9%, have anti-gliadin antibody in the blood. Dr. Fine argues that small bowel biopsies of these patients show that as many as 70% have mild villous blunting, yet not full villous atrophy. Furthermore, he has found that as many as 76% have anti-gliadin in their stool.

The stool test through enterolab also measures fecal fat, indicating malabsorption. The Gluten Free RN recommends Enterolab’s stool panel combined with the genetic test they offer in order to test for celiac disease/gluten intolerance.

Genetic Testing

Genetic testing for celiac disease is available at such places as Prometheus Laboratories, Enterolab, and Kimball Genetics.

There are two genes currently associated with celiac disease that these companies are looking for via a blood sample or a cheek swab: HLA DQ2 or HLA DQ8. These tests are extremely accurate and without one of the two genes, you are practically guaranteed not to have celiac disease. These tests can also be helpful in determining your family’s predisposition for the disease. For instance, I am homozygous, meaning I have two of the genes associated with celiac disease. Thus, it is guaranteed that each of my parents has at least one gene and that all of my children will inherit one gene.

There are a few discrepancies with genetic testing. Most tests simply look for the beta subunit of the gene; however a positive alpha subunit could lead to celiac disease and is often missed.

While HLA DQ2 and HLA DQ8 are the genes for celiac disease, their absence does not exclude the possibility of gluten intolerance. New research is beginning to show that only the HLA DQ4 gene has been shown to have no association with gluten intolerance. Yet only 0.4% of the population in the United States contains only this gene. Currently, only Enterolab will tell you whether you have the genes associated with gluten intolerance. However, if 99.6% of the population contains at least one of the genes associated with gluten intolerance and celiac disease, is it necessary?

References

Fine, MD, K. (2003). Early diagnosis of gluten sensitivity: before the villi are gone. Proceedings of the Greater Louisville Celiac Sprue Support Group, https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm

Serological Tests

Serological tests can provide an effective first step for celiac disease. These tests typically look for three antibodies that are common in celiac disease:

Anti-tissue transglutaminase (tTG) antibodies
Endomysial antibodies (EMA)
Antigliadin antibodies (AGA)

These antibody tests can be of two classes, the immunoglobulin A (IgA) class or the immunoglobulin G (IgG) test. IgA tests are more sensitive and are more likely to be used. However, individuals with celiac disease are ten times more likely than the average person to be deficient in IgA. Therefore, total IgA and IgG should be tested. In the case of deficiency, IgG must be used.

The antibodies, tTG and EMA are more commonly tested for. AGA is not as sensitive or specific, however it is useful for testing children less than two years of age as tTG and EMA tests are inaccurate in infants.

The problem

Currently, there is not a set standard for ordering this test, and doctors frequently order incomplete panels.
As mentioned, patients with celiac disease are ten times as likely to be IgA deficient then the rest of the population. Unfortunately, this is typically the panel ordered, and when a negative test is found, IgA deficiency is not commonly looked for.
A positive tTG or EMA will not usually result in a diagnosis of celiac disease. Instead most are referred to their gastroenterologist for a small bowel biopsy. Only if the biopsy comes back positive they be diagnosed. However, tTG and EMA elevation directly correlate with gastrointestinal damage due to gluten.
Patients need to be on a gluten containing diet at the time the blood panel is taken. A gluten free diet will lead to a negative test.
With a negative test, patients and doctors often assume that it equals a negative diagnosis of celiac disease for life. This is not the case. These blood tests are highly specific, meaning there is little chance for a false positive. However, they are not extremely sensitive, meaning you need to have full blown celiac disease in order to yield a positive test. A positive blood test means the damage has already been done to your body. Why wait to go on a gluten free diet until this point?

References

Testing for celiac disease. (2009, April). Retrieved from http://digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/index.htm

Small Bowel Biopsy, a Tarnished Silver Test

If a positive serological test results, it is current practice that an intestinal biopsy must be done in order to determine intestinal damage. This “gold standard” for celiac disease diagnosis is considered necessary in the medical world in order to diagnose celiac disease and recommend a gluten free diet. However, many are beginning to recognize this test as no better than “tarnished silver”.

Small bowel biopsies are done during an endoscopy. When the patient is asleep, the doctor passes a long, narrow tube through the patient’s mouth and stomach into their intestine. Small instruments are then passed through the endoscope to remove tissue samples, usually in the descending duodenum. A pathologist can study these tissue samples to look for villi damage.

Dr. Peter Green discusses some of the drawbacks of the small bowel biopsy:

“In a large multicenter study, 10.7% of biopsy procedures were inadequate for diagnosis. This is mainly due to inadequate orientation of the small specimens…Not all endoscopic biopsy specimens are viewed and interpreted by GI pathologists…When the slides are obtained for review, only one or two biopsy specimens are on the slide…Villous atrophy in celiac disease is patchy, and orientation of the biopsy specimens is variable.”

In essence, the intestinal biopsy will only appear positive if the villi damage has been done to the portion of the small intestine being tested. Furthermore, the tissue needs to be cut at the appropriate angle and the pathologist needs to know what he is looking for. Lastly, why is this needed, if a positive serological panel for celiac disease already exists? After all, the autoantibodies directly correlate with the damage to the gut.

To answer this question we must step back in time. In the 1950s Sidney Haas began to recognize mild cases of chronic or recurrent diarrhea could be signs of celiac disease, where previously it had only been severe cases in children that were diagnosed. However, in 1956 Margot Shiner devised the first intestinal biopsy. With the new diagnostic tool, pathological changes in the intestine replaced clinical observation. It is important to note that these pathological changes are due to severe damage to the intestine, thereby eliminating the mild cases Sidney Haas had begun to diagnose. Quickly, celiac disease began to disappear from the United States repertoire of diagnoses.

My question to you is this: Why wait until the damage to the small intestine has already been done before going on a gluten free diet? Why not start it today and prevent yourself the harm in the first place?

References

Abel, E K. (2010). The Rise and fall of celiac disease. Journal of the History of Medicine, 65, 81-105.

Green, P H. (2008). Celiac disease: how many biopsies for diagnosis? Gastrointestinal Endoscopy, 67(7), Retrieved from http://www.charlotte-celiac-connection.org/files/Celiac_Disease_How_many_biopsies_for_diagnosis.pdf

Lapid, N. (2009, May 8). Celiac disease tests: diagnosing celiac disease requires blood tests and biopsy. Retrieved from http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm

The Problem with Testing for Celiac Disease

There are several testing options available in order to determine whether you DO have celiac disease, yet we still lack an accurate test that will tell you whether you DON’T have celiac disease. Once ruled in with the condition, you’re in. However, it is nearly impossible to be ruled out.

Currently, if you ask to be tested for celiac disease by one of your doctors, the situation will go something like this: your doctor will order a blood test. If the test is negative, he/she will determine that you do not have celiac disease. If the test is positive, however, they will not determine that you do have celiac disease. Instead, they will refer you to a gastroenterologist for a small bowel biopsy, the ‘gold standard’ of testing. Only then, if the small bowel biopsy is positive will you be diagnosed with celiac disease.

But there are a few problems in these testing methods. Both the common blood panel and small bowel biopsy used for celiac disease diagnosis are fraught with error. Furthermore, other testing options are available such as genetic testing, stool analysis testing and even an over-the-counter blood test not yet available in the United States. The Gluten Free RN’s advice for the best way to determine whether or not you are truly gluten intolerant and the free at home test- the gluten challenge. Cyrex Labs is another great source for accurate blood antibody testing.

Click Here for PDFs of the recommended labs for baseline and followup testing:

Baseline

Follow-up