Celiac.com 05/20/2019 - A stuffy and obscure-sounding scientific paper has more than a few people excited about a breakthrough breath test to help manage diabetes, celiac disease and other conditions.
Celiac is one of the most common and misdiagnosed disease. The process of getting a proper diagnosis can be long and convoluted. In part, that's because people with celiac disease may have few or no symptoms. In fact, these days, most people diagnosed with celiac disease report few or no symptoms.
In fact, it's not at all uncommon for a person with celiac disease to suffer for up to 10 years before getting a proper celiac diagnosis.
In diabetes, glucagon increases blood glucose levels. In diabetes treatment, DPP-4 inhibitors are used to reduce glucagon and blood glucose levels. According to Wikipedia, they do this by increasing levels of incretin, GLP-1 and GIP, "which inhibit glucagon release, which in turn increases insulin secretion, decreases gastric emptying, and decreases blood glucose levels."
The excitement arrises because a team of scientists has developed a selective, non-invasive breath test that could be used to diagnose and treat celiac disease and Type-II diabetes.
The development team set out to develop a selective, non-invasive, stable-isotope 13C-breath test that can detect dipeptidyl peptidase-4 inhibitors (DPP4i), a class of orally available, small molecule inhibitors for the management of Type-II diabetes.
The team included Roger Yazbeck, Simone Jaenisch, Michelle Squire, Catherine A. Abbott, Emma Parkinson-Lawrence, Douglas A. Brooks & Ross N. Butler. The team's paper carries the very weighty title: Development of a 13C Stable Isotope Assay for Dipeptidyl Peptidase-4 Enzyme Activity A New Breath Test for Dipeptidyl Peptidase Activity.
If you read that title, and understood only the words "breath test," you are not alone. The title and the paper are highly scientific. The takeaway is that the test they developed could be useful in diagnosing, treating, and managing diabetes and gastrointestinal diseases, including celiac disease.
The team's paper describes in detail their development process for the stable-isotope 13C-breath test for DPP4. The test could potentially help to treat and manage diabetes, celiac disease, and other conditions, including certain cancers.
"Furthermore," the paper reads "the significant pool of DPP4 in the small bowel and in inflammatory conditions suggests that a DPP4 breath test could also have potential application as a non-invasive method to measure intestinal function/integrity and immune status. Certain cancers also exhibit high expression of DPP4 as exemplified by the adenocarcinoma cell line in this study and this may provide a measure of cancer activity and response to therapy."
Imagine a quick non-invasive breath test that can do all that. That's exciting stuff. Among other things, it could mean better treatment, and less unnecessary suffering. We say: Yes, please!
Do you find the idea of a breath test for diabetes and celiac disease an exciting prospect? Share comments below.
Read more in Nature.com Scientific Reports; volume 9, Article number: 4906 (2019.
Also of interest is D Detel, M Persic, & J Varljen's paper titled "Serum and intestinal dipeptidyl peptidase IV (DPP IV/CD26) activity in children with celiac disease," and published in the Journal of Pediatric Gastroenterology and Nutrition; 45, 65–70
Celiac.com 05/18/2019 - Want to feel like a gourmet chef and dazzle your pickiest eaters with a simple juicy, delicious meat dish? This classic beef tenderloin is just the ticket. A little cooking twine, some salt, pepper, olive oil and butter give this beef tenderloin all the love they need. The result is a timeless classic that is also timelessly tasty, and naturally gluten-free.
1 (4-lb.) trimmed beef tenderloin, tied with cooking twine
4 teaspoons kosher salt
1 tablespoon coarsely ground black pepper
2 tablespoons unsalted butter
1 tablespoon avocado or olive oil
Coat the beef with kosher salt, and pepper, and put it in the fridge uncovered overnight uncovered for 24 to 48 hours. This will give it a flavorful crust.
Remove beef from refrigerator, and let stand at room temperature 1 hour.
Heat oven to 250°F. Place beef on rack in a pan, and roast on center oven rack until a thermometer inserted in thickest portion registers 125°F for rare, 1 hour and 10 minutes to 1 hour and 30 minutes, turning midway through.
When beef reaches desired temperature inside, remove it from oven, and turn on the broiler.
Combine butter and avocado oil in a small saucepan, and heat over medium until butter melts.
Brush meat with butter mixture, and place under the broiler until browned, turning once, about 1-2 minutes each side.
Transfer to a carving board with board dressing, if desired, and let stand 15 minutes before slicing.
Serve with Creamy Horseradish Sauce
Gluten-Free Creamy Horseradish Sauce
1 cup well-drained prepared horseradish
½ cup sour cream
½ cup mayonnaise
2 tablespoons fresh squeezed lemon juice
1 teaspoon kosher salt
¼ teaspoon freshly ground black pepper
2 teaspoons Worcestershire sauce
Few drops Tabasco sauce
Add ingredients to a bowl, and mix well, until creamy. Serve.
Celiac.com 05/17/2019 (Originally published 10/08/2010) - There are many ways in which the immune system is compromised in the context of celiac disease. A lack of fats (due to fat malabsorption) can limit production of eicosanoids and other fat-dependent immune system components. Malabsorption of minerals such as zinc, copper, iron, selenium, or magnesium can also impair immune function in several ways. Malabsorption of non-metalic elements such as iodine can also impair our immune function through impairing T cell production by the thymus. The leaky gut, a chronic feature of untreated celiac disease can induce autoimmunity and deplete the very resources that protect us from infection and toxic agents. The recent successes of Larazotide are highly suggestive that it is the leaky gut that is at the very root of celiac disease, since many celiacs can consume gluten with little harm when taking this drug.
Our cells can make use of three separate sources of energy. They can burn glucose, from carbohydrates, amino acids, from proteins, or fats which can be saturated, monounsaturated, or polyunsaturated fats. Any or all of these can be used for fuel at the cellular level. Celiac disease has long been characterized as a condition of fat malabsorption, and some fats are essential to our survival and wellness. Stephen Cunnane makes an excellent case for these essential fats in his book about the evolution of the human brain titled “Survival of the Fattest”. He shows that the human brain cannot develop normally without adequate supplies of omega 3 fatty acids. We also need fats to make many elements of the immune system. We must consume and absorb omega 3 and omega 6 fatty acids because our bodies are unable to efficiently produce them.
Similarly, as our understanding has expanded, we have come to recognize that absorption of other nutrients such as minerals can also be compromised in untreated celiac disease. (Some people with celiac disease continue to battle mineral malabsorption for many years after adopting the gluten-free diet.) Patients with iron deficiency that does not respond to supplementation should be investigated for celiac disease, as refractory iron deficiency is common in untreated celiac disease (1). Iron is an important constituent of immune function and Stephen J. Oppenheimer has identified seven separate dynamics through which iron deficiency can compromise immune function. These include:
Reduced neutrophil function which can be reversed through iron supplementation;
Reduced numbers of T-lymphocytes;
Reduced T-lymphocyte responsiveness;
Impaired natural killer cell activity;
Impaired interleukin 2 production;
Altered macrophage migration;
Altered cutaneous hypersensitivity (2).
Magnesium deficiency, in the context of celiac disease, has been identified as a factor in damage to the parathyroid gland and consequent bone demineralization. Rude et al have shown that magnesium supplementation alone will reverse this problem (3).
Similarly, mineral malabsorption may impede our supplies of zinc, copper, and selenium, each of which may have a negative impact on the immune system. Even a mild zinc deficiency can impair T cells, interfere with hormonal regulation of the thymus, and activation of tumor necrosis factor and natural killer cells (4). I have previously reported that natural killer cells are the body’s first line of defense against malignancy (5). Natural killer cells also help to protect us from a variety of infectious agents.
Malabsorption of non-metallic elements such as iodine can also impair immune function. Not only does the thyroid gland require iodine to function properly, the healthy thymus gland contains large reserves of iodine and a wide range of immune functions require iodine. The antibacterial uses of iodine have a long history and this element was discovered early in the nineteenth century. Although iodine is now added to most table salts in the industrialized world deficiency continues to plague the third world causing preventable mental retardation. Failure to absorb this important nutrient can cause disturbances to many facets of the immune system and impair heat regulation through compromised thyroid function. Added problems with the thyroid gland can also come to the untreated celiac through autoimmunity induced by a process called molecular mimicry (more on this later) which is one of the means by which the leaky gut can also create havoc with the immune system.
Jon Meddings has characterized the gastrointestinal tract as a long tube running through our bodies that contains materials from the outside environment (6). Unlike our skin, we have only one layer of cells in the intestine that protects us from the outside world. These cells must selectively absorb nutrients from this material, while providing a protective barrier against constituents of our food that might harm us. These nutrients are absorbed through the epithelial cells and are released on the other side of the cells into the bloodstream.
The leaky gut, as induced by gluten, is a state where excessive zonulin is produced in the intestinal lumen. This protein attaches to the epithelial cells that line the intestine. The epithelial cells move further apart leaving gaps between the cells, thus allowing matter to enter the bloodstream on the other side of the epithelial barrier. Depending on the size of these gaps, various toxins, infectious agents from our food, undigested and partly digested food particles, and even the friendly bacteria that inhabit our intestines may reach the bloodstream and beyond.
Whether in the form of partial or complete proteins from foods, microbes from the external environment, or friendly bacteria from our intestines, once in the bloodstream our immune systems recognize these proteins as foreign. We produce antibodies to attack and destroy them. If these same proteins arrive in the circulation repeatedly, we will have elevated serum antibodies specifically sensitized to these proteins. Protein structures can contain enormously variable sequences of amino acids. Perhaps for the sake of efficiency, these selective antibodies recognize only one segment of the foreign protein structure, in the form of a single sequence of amino acids. According to the theory of molecular mimicry, this or a very similar sequence of amino acids may be found in proteins that form some of our own tissues. If we have elevated levels of antibodies that are made to attack such a string of amino acids, they will also attack self tissues. This is process results in autoimmune disease.
Because it is difficult to predict what sequence of amino acids the immune system will choose, we cannot predict the specific self tissues that will be attacked by our immune systems. Nonetheless, if the theory of molecular mimicry is correct, gluten may be at the root of many forms of autoimmunity because of its impact on zonulin production.
Celiac Disease vs. Gluten Sensitivity
The greater hazard appears to lie with celiac disease rather than non-celiac gluten sensitivity, as celiac patients not only have to contend with all the problems that come from a leaky gut, they also have all the problems associated with malabsorption. However, Anderson et al report that people with gluten sensitivity showed a greater rate of all cause mortality as well as significantly increased rates of non-Hodgkin’s lymphoma and cancers of the digestive tract than were found among patients with celiac disease (7). These unfortunate data may be the direct result of the many physicians and other health care practitioners who consistently urge their patients to continue to consume gluten despite the clear evidence, in the form of anti-gliadin antibodies, that these patients are mounting an immune reaction against the most common food in their diet. Peter Green, professor of Medicine at Columbia University, has called for more attention to be paid to “the lesser degrees of intestinal inflammation and gluten sensitivity” (8).
Farhad Zamani, Mehdi Mohamadnejad, Ramin Shakeri, Afsaneh Amiri, Safa Najafi, Seyed Meysam Alimohamadi, Seyed Mohamad Tavangar, Ardeshir Ghavamzadeh, Reza MalekzadehGluten sensitive enteropathy in patients with iron deficiency anemia of unknown originWorld J Gastroenterol 2008 December 28; 14(48): 7381-7385
Oppenheimer Stephen J, Iron and Its Relation to Immunity and Infectious Disease. The American Society for Nutritional Sciences Supplement, Journal of Nutrition. 2001;131:616S-635S.
Rude RK, Olerich M. Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy. Osteoporos Int. 1996;6(6):453-61.
Prasad AS. Zinc and immunity. Mol Cell Biochem. 1998 Nov;188(1-2):63-9.
Hoggan R. Considering wheat, rye, and barley proteins as aids to carcinogens. Med Hypotheses. 1997 Sep;49(3):285-8.
Meddings J. National Conference, Canadian Celiac Association, Calgary, Alberta, Canada, 1999
Anderson LA, McMillan SA, Watson RGP, Monaghan P, Gavin AT, Fox C, Murray LI Malignancy and mortality in a population-based cohort of patients with coeliac disease or ‘gluten sensitivity’. World J Gastroenterol 2007 January 7; 13(1): 146-151
Green P H R, Mortality in Celiac Disease, Intestinal Inflammation, andGluten Sensitivity. JAMA. 2009;302(11):1225-1226.
Celiac.com 05/17/2019 - If you're lucky a product's name will tell you exactly how it will taste. Most of the time this isn't the case, and its name may not tell you much about its flavor. I got lucky when I tried Riceworks' Salsa Fresca, Sea Salt & Black Sesame, and Sweet Chili chips, and found that each flavor of these wonderful gluten-free snacks perfectly fit their names.
Riceworks chips are lighter than normal tortilla chips, probably because they are made using brown rice and rice flour, in combination with corn flour. They are similar to corn chips, but definitely lighter, crunchier, and easier on your teeth than a typical corn tortilla chip. Each flavor also contains sesame seeds.
The Riceworks Salsa Fresca tastes as good as it sounds—like you are eating a light, crispy tortilla chip covered in the best salsa ever—except you don't need the salsa. These chips really pack a ton of flavor in each bite, and this makes it hard to stop eating them! The Salsa Fresca flavor is perfectly balanced and the salsa flavor comes from the generous amount of herb and spice flavoring that cover each chip. They have a zesty and slightly spicy taste.
The Riceworks Sweet Chili chips also taste like they sound—sweet up front, with a nice chili pepper finish. I love the combination of sweetness and chili. Even though the seasonings are generously applied, the chips were not too spicy, so it was easy to eat far too many of these as well...which I did! The Sweet Chili chips were my favorite flavor of the three.
The Riceworks Sea Salt & Black Sesame chips were light and crunchy with a nice sesame aftertaste. I think these chips would be the best out of the three flavors to use for dipping, and they work well with every dip I tried, including hummus, ranch-style dip, and good old salsa.
Overall Riceworks Gourmet Rice Snacks have done an outstanding job with these snacks, and they also make three additional flavors that sound great, including: Sundried Tomato, Sea Salt, and Black Japonica Rice. I can't wait to try them!
Visit their site for more info.
Celiac.com 05/16/2019 - People with potential celiac disease show positive results from blood tests for tissue transglutaminase antibodies (anti-TG2), but show no damage to the intestinal lining. Such patients are all Marsh stage 0 or 1, meaning they have healthy, normal gut mucosa.
Clinicians are still sorting out the best way to treat these patients. To provide some answers, a team of researchers recently set out to assess risk factors for villous atrophy in children with potential celiac disease.
The team included R. Auricchio, R. Mandile, M.R. Del Vecchio, S. Scapaticci, M. Galatola, M.A. Maglio, V. Discepolo, E. Miele, D. Cielo, R. Troncone, and L. Greco. They are variously affiliated with the Department of Translation Medical Science, Section of Pediatric, and European Laboratory for the Investigation of Food Induced Disease (ELFID), University Federico II, Naples, Italy, and the Department of Medicine, University of Chicago, Chicago, IL, USA.
For children with "potential" celiac disease who do not follow gluten-free diets, possible risk factors for villous atrophy include age at diagnosis, gamma delta lymphocytes and HLA haplotype, researchers say.
The team conducted a prospective study of 280 children between 2–18 years old in Italy who had suspected celiac disease, and followed the children from 18 months to 12 years. Each participant had two consecutive positive results from tests for anti-TG2, tested positive for the endomysial antibody (anti-EMA), had total serum levels of IgA in the normal range, normal Marsh 0–1 duodenal condition in 5 biopsies, and HLA DQ2- or DQ8-positive haplotypes.
The children underwent serologic tests and clinical analyses every 6 months and a small bowel biopsy every 2 years. Two hundred ten patients of the original group were checked after 9-years. The team conducted multivariate analyses of clinical, genetic, and histologic data to spot factors associated with villous atrophy.
The team's long-term study showed 43% cumulative rates of progression to villous atrophy over the 12-year study. The team identified factors that can be used to spot children with the highest risk for villous atrophy.
This approach might be used to assess whether children with suspected celiac disease should immediately start a gluten-free diet or be monitored on their regular diet.
The takeaway, Dr. Auriccio told reporters, is that potential celiac disease affects "a very heterogenous group of patients [who]...have to be carefully managed by expert pediatric gastroenterologists."
Studies like this one by Dr. Auriccio and his team are highly valuable, because diagnosing and properly treating celiac disease as early as possible is important in helping to prevent the development of associated conditions later on.
Read more at Gastrojournal.org
Celiac.com 05/16/2019 - Diagnosed with celiac disease when he was just two years old, Smith spent most of his life avoiding gluten, including the stray grains of wheat and rye that can contaminate otherwise gluten-free grains, like oats.
Sith began sorting and rolling gluten-free oats as a high school student, armed with a loan from the FFA Parent Support Group, a tabletop mill, and a 50-pound bag of groats.
He began the first year by selling to his oats to fifteen family members, who also had celiac disease. The next year, Smith reached out to a group of local residents with celiac disease. The group gathered once a month for support and potluck suppers, and became regular buyers of his gluten-free oats. That year, he sold 500 pounds of gluten-free oats.
At a show in Casper, Wyoming, during his junior year, Smith met a writer from California and a doctor from New York. As word of Smith’s oats began to spread, his company, Gluten-free Harvest, began to grow. Gluten-free Harvest currently employs more than a dozen people, and the company’s mill runs 24-hour a day, four days a week.
At that time, his tabletop mill could only roll 1 pound of oats in 15 minutes, and keep pace with the growing business was tough. Smith found a mill that could handle the load, but the machinery needed 150-man hours of cleaning to prevent cross contamination before the oats could then be processed quickly.
gluten-free Harvest now ships gluten-free oats to Scotland, Australia, Mexico and Chile, and is exploring markets in Taiwan. Sales are mainly internet-based, though some brick and mortar stores in Wyoming stock gluten-free Harvest products. Amazon ranks the company 11th among purveyors of oatmeal.
Smith currently sources conventional oats within 30 miles of Powell. He's working on nailing down the trickier supply chain for organic gluten-free oats. Look for gluten-free Harvest oats online at Glutenfreeoats.com.
Celiac.com 05/14/2019 - A strict gluten-free diet is the only proven treatment for celiac disease, yet researchers still don't know what effect, if any, the diet might have on risk factors for cardiovascular disease.
A team of researchers recently set out to determine whether following a gluten-free diet influences risk factors for cardiovascular disease among newly diagnosed pediatric celiac disease subjects. Their results suggest that a gluten-free diet does not increase cardiovascular disease risk, at least in the short-term.
The research team included E Zifman, O Waisbourd-Zinman, L Marderfeld, N Zevit, A Guz-Mark, A Silbermintz, A Assa, Y Mozer-Glassberg, N Biran, D Reznik, I Poraz, and R Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach-Tikva; Pediatric Gastroenterology Clinic, Pediatric Division, Meir Medical Center, Kfar-Saba; Sackler Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel; and the Clinical Nutrition and Dietetics Department, Schneider Children's Medical Center of Israel, Petach-Tikva.
For their study, the team prospectively enrolled pediatric patients receiving upper gastrointestinal endoscopy for suspected celiac disease. Team members recorded physical and lab data related to cardiovascular disease risk, both at celiac diagnosis and after 1 year following a gluten-free diet, and assessed any variation in risk fo cardiovascular disease. The team used both paired tests or Wilcoxon nonparametric tests, as needed.
In this study, children with celiac disease showed no increase in cardiovascular disease risk factors after one year on a strict gluten-free diet. The results did show a small increase in median fasting insulin levels, but no increase in insulin resistance as measured by homeostatic model assessment. During the same period, rates of dyslipidemia remained steady, while median high-density lipoprotein levels increased. The long-term implications of these small changes is not clear.
So, at least in the short run, it looks like a gluten-free diet doesn't increase risk for cardiovascular disease in children with celiac disease. Further study is needed to determine if that's true long-term.
Read more at the Journal of Pediatric Gastroenterology & Nutrition; 2019 May;68(5):684-688.
Celiac.com 05/13/2019 - You might remember earlier headlines touting lower celiac disease risk in people who smoke cigarettes compared with people who never smoked. Several studies have shown a negative association between cigarette smoking and celiac disease, but results have been inconsistent.
A study published in 2004 in the European Journal of Gastroenterology & Hepatology, found that cigarette smoking provided protection against the development of adult celiac disease.
In a 2015 letter to the editors of the American Journal of Gastroenterology regarding the study "Incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades: population-based study" by West et al., Dr. S. Veldhuyzen van Zanten, MD, PhD, of the Division of Gastroenterology, University of Alberta in Edmonton, Alberta, Canada, wonders whether lower rates of cigarette smoking in the preceding decades "might help explain the study findings."
So, do cigarette smokers have a lower risk of celiac disease than non-smokers? To find a conclusive answer, a team of researchers recently set out to summarize all available data, using meta-analysis, and to demonstrate any decreased risk of celiac disease among current smokers compared with people who never smoked.
The research team included Karn Wijarnpreecha, Susan Lou, Panadeekarn Panjawatanan, Wisit Cheungpasitporn, Surakit Pungpapong, Frank J. Lukens, and Patompong Ungprasert.
The team used MEDLINE and Embase databases to identify all group studies and case-control studies that compared the risk of celiac disease among current and/or former smokers versus people who never smoked. They then extracted the effect estimates from each study and combined them using the random-effect, generic inverse variance method of DerSimonian and Laird.
The team's meta-analysis of seven studies, with 307,924 total participants, showed that current smokers have a substantially reduced risk of celiac disease compared with those who never-smoked.
However, they found no significant difference in celiac disease risk between former smokers and those who never smoked. The team suggests that the impact of cigarette smoking on immune system and gut permeability are the likely biological reasons for earlier findings.
Read more at Sagepub.com
The researchers are variously affiliated with the Department of Internal Medicine, Bassett Medical Center, Cooperstown, USA; the Division of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, Mayo Clinic, Jacksonville, USA; the Department of Medicine, University of Minnesota, Minneapolis, USA; the Department of Biochemistry, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; the Department of Medicine, Division of Nephrology, University of Mississippi Medical Center, Jackson, USA; and the Clinical Epidemiology Unit, Department of Research and Development, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand.
Celiac.com 05/11/2019 - Zucchini is one of the early stars of spring, and this delightful recipe allows zucchini to shine. This simple blend of shredded zucchini, potato starch, eggs, and a bit of Parmesan cheese gets a quick fry in oil. A dollop of sour cream and a pinch of chives rounds them out. Perfect for spring, and even more perfect for sharing, these crispy, salty zucchini fritters will be the standout dish at your next meal.
4 medium zucchini, grated
¾ teaspoon kosher salt, divided
⅓ cup potato starch, or tapioca flour
⅓ cup grated Parmesan cheese
2 large eggs, lightly beaten
2 garlic cloves, finely chopped
3 tablespoons cooking oil
4 tablespoons sour cream
3 tablespoons finely chopped fresh chives
Heat oven to 250°F.
Stir together zucchini and ¼ teaspoon of the salt in a large wire-mesh strainer set over a large bowl.
Let stand until zucchini has released water, about 15 minutes. Discard liquid.
Place zucchini in a kitchen towel, and squeeze to remove excess water. Add zucchini to a large dry bowl.
Add potato starch, Parmesan, eggs, and garlic to bowl with zucchini; stir until combined.
Heat 1 tablespoon of the olive oil in a large nonstick skillet over medium.
Add 1 heaping tablespoon zucchini mixture to skillet, and use a spoon to flatten into a 3-inch round.
Repeat to make more fritters.
Cook about 2 minutes, until golden brown and slightly crisp.
Flip and cook another minute or so, until bottom side is crisp and golden.
Place cooked fritters on a large baking sheet lined with a wire rack.
Move rack to a warm, 250°F, oven.
Working in batches, cook the remaining fritters. Place on rack as you go.
When done, sprinkle cooked fritters with remaining ½ teaspoon salt.
Top with sour cream and chives, and serve warm.
Celiac.com 05/10/2019 (originally published 10/08/2010) - After giving birth to my first son in 2003, my OB/GYN tested me for diabetes due to a sore on my leg that would not heal. The diabetes test came back negative but my thyroid stimulating hormone (TSH) level was extremely high. Further testing revealed Grave’s disease. After seeing an endocrinologist I underwent radioactive iodine ablation to “kill” my thyroid gland. After ten months of unsuccessful thyroid replacement therapy, following radioactive iodine ablation due to Grave’s disease, I was diagnosed with celiac disease in April of 2005.
Once I had begun Levoxyl, a thyroid replacement hormone, things got worse instead of better. I had monthly blood work done to check my TSH levels in order to see if I was on the proper dosage of medication. Over the next ten months, my TSH levels continued to climb, eventually reaching a high of more than 150, (the normal range is from 0.4 to 4.5.) despite being on a very high dosage of Levoyxl and having added another medication for the T3 hormone (Cytomel).
During this time, it felt as though the life were being sucked right out of me. I was extremely lethargic, gaining weight at an unnatural rate of 2—4 pounds a week, despite being on the Weight Watchers program, and I fell into a deep depression. I was prescribed a series of antidepressants, none of which did any good. Life was borderline unbearable, especially while caring for a toddler.
In April of 2005, after being at his wits’ end as to why I was not absorbing my thyroid hormone, my brilliant endocrinologist thought to test me for celiac disease and the blood test was positive. He did not recommend doing the biopsy. I think that was because there was an urgency to get control of my TSH levels. Within 4 months of going on the gluten-free diet, my TSH levels dropped from the 150’s to 5.52.
I wish I could say my story ended there and that I have been happily gluten-free ever since, but that is not the case. Once I began to feel better from having a normal thyroid level, I foolishly began to question my celiac diagnosis. From what I read at the time, the diagnosis did not make any sense. I did not have chronic gastrointestinal issues, vitamin and mineral deficiencies, or any of the ‘classic” symptoms of celiac disease. Neither did I have a known family history of celiac disease.
The social impact of being gluten-free was devastating for me. I did not have a supportive family who embraced my diagnosis. My mother was the biggest influence. She was confused and overwhelmed by all the changes I needed to make and instead of learning about it with me, she quit including me in family meals. My mom couldn’t understand why I couldn’t just have a “little” gluten a few times a year, like at Thanksgiving and Christmas. She thought I was too demanding in questioning her food and its preparation, so she felt it was easier to just have me there when food was not involved. I felt lonely and guilty for ruining her holidays and my depression worsened from the isolation.
To make matters worse for my uneducated mind, I began to take information I read about the inaccuracy of the AGA blood tests and use it to convince myself that I did not actually have celiac disease. When I was diagnosed with celiac disease, it was based on only two tests that were ordered by my doctor: Anti-Gliadin IgG and Anti-Gliadin IgA. My AGA-IgG results fell in the “Equivocal” range at 25.2 EU (positive was greater than 30 EU). My AGA IgA was positive at 42.7 EU (positive was also greater than 30 EU).
Without consulting my physician, I foolishly went off the diet for the next year and I was included in my family again. Follow-up visits to my endocrinologist showed that my TSH levels were still in the normal range (despite resuming gluten consumption) and I was not suffering from any GI issues, so I was fairly confident my blood tests fell under the “false positive” category.
When my husband and I decided to have another baby, I was at least aware enough to get the biopsy first. Knowing about the fertility issues that can accompany untreated CD, I had to know for sure before getting pregnant. I may have been reckless with my own health, but my children are another story. When I met with my gastroenterologist for the first time and presented my case, he agreed with my assessment and said I probably didn’t have celiac disease. The biopsy showed otherwise. It was positive. When I questioned him on my lack of symptoms, he said a few things to me.
It was likely that my celiac disease was recently triggered by my pregnancy with Sam, thus the damage to my intestine wasn’t as severe. The damage to the intestine is patchy at first and the areas of my intestine that were damaged didn’t affect my absorption of iron, vitamin D, etc. Celiac Disease is progressive, meaning the longer I consume gluten during active celiac disease, the more intestinal damage and symptoms I would incur.
After giving birth to my second son in July of 2007, I cheated on the gluten-free diet again because the hospital could not accommodate my diet.
Five months after my son was born, my father’s brother died from non-Hodgkin’s lymphoma just 9 days after he was diagnosed. My pleas for the hospital to test him for celiac disease were ignored as they were trying to save his life. I knew he wouldn’t make it but I thought it was important to know for our family-tree. After his death, I learned that my uncle battled severe asthma as a child and approximately 10 years prior to his death he was diagnosed with “tight belt syndrome” after seeing his doctor for gastrointestinal symptoms. Nothing else was done.
Ironically, while at my uncle’s memorial service in July of 2008, I fell off the diet for the final time. This time was different though, and about 7 weeks into it, I broke out in a blistering rash all over my torso and scalp. I also had a bruise 10-inches in diameter on my back as the result of trying to relieve the intense itching by rubbing my back on a doorknob. I went to my dermatologist for a skin biopsy to confirm my suspicion of dermatitis herpetiformis.
Once the Dr. confirmed it, I asked her if she saw dermatitis herpetiformis often in her practice. She said she had a few patients with it, but it wasn’t common. I then asked her if she knew that it is related to celiac disease and she responded with, “I have heard the GF diet can help some patients with DH, but Dapsone is a more effective treatment” (as she handed me a prescription).
I never filled that prescription, especially after my doctor told me that I would need regular liver tests while I was on it. Knowing that untreated celiacs run the risk of liver diseases like autoimmune hepatitis and biliary cirrhosis, adding a medication that could further jeopardize my liver seemed foolish.
It turns out that my DH diagnosis was the key to further understanding my lifelong problem with gluten-sensitivity. While I have not had the classic GI symptoms, I have been dealing with chronic atypical symptoms my entire life. One of the physicians I saw most frequently, when growing up, was a dermatologist. I have recently acquired my medical records from that doctor and this is part of what they say:
1980 (age 6): Diagnosed and treated for chronic eczema (on my feet—duration of treatment was at least 7 years)
September 1980 (age 6): Diagnosed and treated for Impetigo* (on my scalp)
August, 1982 (age 8): Diagnosed and Treated for Impetigo* (on my buttocks)
In 1997 (age 15): I began to develop a minor itchy rash on my knees. My allergist chalked it up to my environmental allergy to grass and later the dermatologist said it was related to the humidity. (I was never tested for dermatitis herpetiformis.)
1998 (age 16): I developed a rash consisting of flat scales on my torso, arms and scalp on a trip to Florida. Upon returning home and seeing my dermatologist, he diagnosed me with psoriasis. After spending a year in light therapy, I went into spontaneous remission and have not had a recurrence in 20 years.
From 1999—2008, my DH was sporadic and fairly minor with limited irritation. Until my final outbreak, I never exhibited a rash that looked anything like the photos I have seen in medical journals.
Looking back, I can also make several other connections to undiagnosed gluten sensitivity. I have had many behavioral issues over the years, including extreme emotional highs and lows, anger management issues, depression, and trouble concentrating. I was diagnosed with Adult ADD by a psychiatrist in 2009 and now take medication for it.
In 2008, after suffering from severe constipation, my then 5 year old was diagnosed with celiac disease via a positive tTG blood test. His biopsy came back “clean,” and I was originally told to bring him back when other symptoms developed. I decided to ask his doctor an “off the record” question regarding what he personally would do if this were his son. He said that he would put him on a gluten-free diet immediately, so that is what I did.
I am now 2 years into a strict gluten-free lifestyle, and have never felt better or been happier in my life. Not only are my celiac son and I gluten-free, but so is my husband and our other son, neither of whom have been diagnosed with celiac disease. My husband is so enthusiastic about our diet (he not only feels better, but has lost 20 pounds after going gluten-free), that he has never been tempted to eat gluten. I no longer feel a sense of loss or deprivation on the diet, and in so many ways, we are all better for it.
*According to the Mayo Clinic, the following are some of the signs and symptoms of Impetigo:
Red sores that quickly rupture, ooze for a few days and then form a yellowish-brown crust
Painless, fluid-filled blisters
Dermatitis Herpetiformis is also characterized by an itchy, blistering rash commonly found on the knees, elbows, scalp and buttocks.
I often wonder if the Impetigo was actually DH?