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Celiac.com 01/29/2025 - Celiac disease is a chronic autoimmune condition triggered by gluten consumption. It is known that close family members of individuals with celiac disease face a higher risk of developing the condition themselves. To better understand this risk, researchers conducted a comprehensive review and analysis of existing studies to estimate the prevalence of celiac disease among first-degree relatives and explore the symptoms they experience. The results highlight significant patterns and offer critical insights for early detection and management strategies. Study Scope and Methodology The analysis included 34 studies encompassing over 10,000 first-degree relatives of individuals diagnosed with celiac disease. First-degree relatives are defined as parents, children, and siblings. These studies used anti-tissue transglutaminase antibody tests to screen for celiac disease and confirmed diagnoses through intestinal biopsies when necessary. The researchers compiled data from multiple regions to determine both the overall prevalence of the disease and its symptoms among these close relatives. The data was further analyzed to assess differences in prevalence between various family roles, geographical regions, and the presence of symptoms. Prevalence of Celiac Disease Among First-Degree Relatives The study found that first-degree relatives of individuals with celiac disease face a significantly elevated risk of developing the condition compared to the general population. Approximately 11% of these relatives tested positive for celiac disease antibodies, and 7% had biopsy-confirmed celiac disease. Family roles played a key part in determining risk levels: Daughters had the highest prevalence rate, with 1 in 4 (23%) affected. Sisters were the second most impacted group, with a 14% prevalence rate. Brothers and sons showed lower but notable prevalence rates of 9% and 6%, respectively. Parents, particularly fathers, showed the lowest prevalence rates, around 5%. These findings emphasize the importance of targeted screening for close female relatives, particularly daughters and sisters, who appear to be at the greatest risk. Regional Differences in Prevalence The prevalence of celiac disease among first-degree relatives varied widely across different countries and regions. Some of the highest antibody prevalence rates were observed in Hungary (24%) and Cuba (19%). Similarly, Serbia (16%) and the United States (15%) reported the highest rates of biopsy-confirmed celiac disease. This variation may be influenced by genetic factors, dietary patterns, healthcare access, and cultural awareness of celiac disease. Regions with higher awareness and diagnostic capabilities are more likely to report higher prevalence rates. Symptoms and Asymptomatic Cases The study also examined the symptoms experienced by first-degree relatives with celiac disease. The majority of cases presented with gastrointestinal symptoms: Abdominal pain was the most commonly reported symptom, affecting 42% of cases. Bloating (39%) and flatulence (38%) were also frequent complaints. Interestingly, a substantial portion of relatives with celiac disease (34%) reported no symptoms at all. This underscores the silent nature of the disease in many individuals, making routine screening even more essential for early detection. Non-gastrointestinal symptoms were also noted, with pallor being the most frequent (54%), possibly indicating anemia or nutrient deficiencies. Implications for Screening and Management Given that approximately 1 in 14 first-degree relatives of celiac disease patients has the condition, routine screening of this population could play a critical role in early detection. Early diagnosis allows for timely dietary interventions, reducing the risk of long-term complications such as nutrient deficiencies, osteoporosis, and other autoimmune conditions. Daughters and sisters, who exhibit the highest risk, should be prioritized in screening programs. Additionally, healthcare providers should consider screening asymptomatic relatives, as they may unknowingly harbor the disease and its associated risks. Why This Study Matters for Families Affected by Celiac Disease This research underscores the genetic connection in celiac disease and highlights the need for vigilance among family members of diagnosed individuals. It provides a clearer picture of which relatives are most at risk and the range of symptoms they might experience—or not experience at all. For families managing celiac disease, these findings emphasize the importance of open communication with healthcare providers about familial risk and the value of proactive screening. Early detection in first-degree relatives can help prevent unnecessary suffering and improve quality of life through timely dietary changes and medical support. In conclusion, this study sheds light on the significant prevalence of celiac disease among close family members and calls for a more comprehensive approach to screening and education. By identifying high-risk individuals early, healthcare systems can better support those affected by this lifelong condition. Read more at: journals.lww.com Watch the video version of this article:

Celiac.com 11/11/2022 - You are either diagnosed with celiac disease, are gluten sensitive, or perhaps you have latent or silent celiac disease, which may mean that you seem to have few or even no health problems at all, yet you sill are a celiac. Latent and silent celiac disease seem to occur more often in adults, but they can also affect children as well. Did you know that there are several types of celiac disease, and experts don't always agree on how to deal with each type? Researchers Now Recognize Several Types of Celiac Disease: Classic Celiac Disease This version manifests with the classical GI symptoms of abdominal pain, diarrhea, nausea, and possible vomiting, which can also cause dehydration, dizziness, and lead to vitamin and mineral deficiencies. This type of celiac disease is usually the easiest form to diagnose. People in this category will end up having positive blood antibody and endoscopy (biopsy) test results for celiac disease, and all doctors should recommend that they go on a gluten-free diet for life. Atypical Celiac Disease People with atypical celiac disease generally do not have GI symptoms, but they may have other health issues, for example autoimmune thyroid problems, unexplained skin rashes, undefined bleeding, and/or nerve damage like ataxia. Those with this form of celiac disease can often go undiagnosed for years, and many have to go from doctor to doctor before they finally get the proper tests done and get diagnosed. Those in this category will end up having positive blood antibody and endoscopy (biopsy) test results for celiac disease, and all doctors should recommend that they go on a gluten-free diet for life. Asymptomatic Celiac Disease or Silent Celiac Disease This category is also a form of atypical celiac disease, and it is categorized by those who have little or no symptoms, but it can still affect different parts of their body. Since celiac disease, in any form is a skin, gut, and brain/nerve disease, it can often be difficult to diagnose silent or asymptomatic celiac disease, and it is often found by accident while running other medical tests. Some may have abnormal liver tests, or low iron and/or B12 or other nutrient levels, and even though they may not have any symptoms they will still have various levels of villous atrophy of the small intestines. Many in this group are sent to numerous specialists, and end up having many medical tests done before discovering that they have celiac disease. Those in this group will end up having positive blood antibody and endoscopy (biopsy) test results for celiac disease, and all doctors should recommend that they go on a gluten-free diet for life. Silent or asymptomatic celiac disease tends to be the most difficult form of celiac disease to diagnose, and many in this category are totally surprised at the time of their diagnosis, and can often be skeptical about needing to go on a gluten-free diet. A minority of doctors may even tell silent celiac disease patients that a gluten-free diet is optional, however, all patients in this group should go gluten-free. Potential Celiac Disease or Latent Celiac Disease People in either of these groups may have positive blood tests for celiac disease yet a negative biopsy. Some experts believe that this may be an early stage of celiac disease, before the villi are damaged. Some doctors tell patients in this group that they do not need to be on a gluten-free diet, however, anyone who has abnormally high celiac disease antibody levels likely falls into the “non-celiac gluten sensitivity” (NCGS) category, and many experts agree that this could represent a pre-celiac disease stage, and if so it would be best to avoid uncomfortable symptoms and other possible related health issues, so people in this group should also consider going on a gluten-free diet for life. I used to feel very sorry for the atypical and silent celiac disease folks, but I stopped feeling so sorry for them because they usually don't have dermatitis herpetiformis, which I have, and my dermatitis herpetiformis symptoms can be horrible. While the some people in the asymptomatic or silent category may not want to go gluten-free, even though they should, I knew within twenty-four hours that I had been "bitten" with gluten because my dermatitis herpetiformis sores would itch and drive me crazy, but at least I knew I had ingested gluten. Whenever this happens I'm in for a tough itchy time for a ten day period, and need to use Dapsone for the itch and Atarax to help eliminate me continually scratching my scalp, arms and thighs. A big warning to those with potential celiac disease and latent celiac disease: If you continue ingesting gluten, one day you may be surprised that you have graduated to the classic form of celiac disease and end up with malabsorption issues and a host of related health issues, perhaps even dermatitis herpetiformis. Again, many experts agree that patients in these groups should remain gluten-free, which may help some to escape getting full blown celiac disease, while allowing others to avoid the many issues that can be associated with non-celiac gluten sensitivity.

Celiac.com 12/25/2020 - In Spring 2006, Journal of Gluten Sensitivity Newsletter published an article titled “To HAIT And Back” about my encounter with gluten-induced autoimmune thyroiditis. At the time I wrote that piece, I was confident that the elimination of gluten and proper level of thyroid hormone supplementation had me on a track back to full health. However, little did I know that my illness consisted of two syndromes. Every gluten-induced illness, no matter which of the body’s systems it affects, is accompanied by some degree of intestinal destruction. This is true even in cases of “silent” gluten intolerance/ celiac disease, where there are no obvious digestive symptoms. In fact, my health problems were layered: in addition to thyroid destruction, I also had significant, silent intestinal destruction. In addition to the autoimmune thyroid issue, a second issue of malnutrition had to be corrected before my health would return to a truly high level. As 2005 drew to a close, I realized that, although I was feeling generally much better, my health was not perfect. I was willing, at that point, to attribute this to what Ridha Arem M.D had said in his book, Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. For that reason, I used a small dose of Mirtazapine to help me feel better. I was able to maintain a fairly level state into spring 2006. By late spring 2006, however, my sleep had begun to deteriorate again in spite of the assistance provided by Mirtazapine and other prescription drugs. In May, I tried acupuncture a few times, and bought a light-box, but still could not get relief. By the time summer rolled around, I was back in the office of the naturopath who had originally convinced me to go gluten-free in June, 2003 due to gliadin antibodies. An adrenal test showed that my adrenal function had gone down to almost nothing. A continual downward trend in adrenal function was shown by tests in 2002, 2004, and 2006. The naturopath contended that I needed to go back on Cortef (hydrocortisone) and DHEA to prop up my adrenals. But that did not provide much symptom relief. By September, I was feeling really bad. The naturopath and her assistant decided that I should be tested for heavy metals. The test came back positive: significantly elevated level of lead, and somewhat elevated level of mercury. Shortly thereafter, I started chelation therapy with the chelating agent DMSA. This continued for eleven 2-week rounds, into Feb. 2007. Although I had periods where the chelation seemed to be making me feel better, the result was not as successful as I expected. Three months after the chelation ended, a follow-up test (non-provoked) showed an undetectable lead level, so it seems unlikely that I have a large amount of lead stored in bone. In spring 2007 I was back in my thyroid doctor’s office, and we discussed other treatment alternatives. Who in the area was likely to come up with new avenues of investigation? The result was a referral to see a “holistic” M.D. in March 2007. Improvement thereafter was rapid. On my second visit to the “holistic” M.D., he recommended that I do a urine test for the stress disorder pyroluria. The results came back positive, although not strongly so. He recommended starting treatment anyway, with a high-dose vitamin and mineral preparation. This preparation contains vitamins B6/P5P, niacin, and pantothenic acid, along with zinc, manganese, and magnesium. I was skeptical, but had no serious objection to trying something that was highly unlikely to be toxic. The result was that I felt almost completely well within three weeks. However, I started feeling worse after about five weeks. Because of my long experience with drugs, I suspected that the very high dose of “pyroluria formula” I was taking might be too high. Cutting back the dose brought me to a state in which I felt clear, calm, collected, and slept well. Because my read-out on the pyroluria test was in the gray zone between no diagnosis and firm diagnosis, it seems sensible that I would not require a mega-dose. I was later to determine that my negative response to large amounts of the preparation was probably due to the high levels of pantothenic acid it contains, and eventually began supplementing the formula with plain B-6 and zinc. To augment my treatment by the “holistic” M.D., I shortly thereafter began seeing a Certified Nutritionist he recommended. On the very first visit, the CN looked over my case history and made a couple recommendations. The first was to add a supplement regimen designed to heal gluten enteropathy. That regimen included large doses of ground flax-seed, Metagenics’ Glutagenics (glutamine/licorice/aloe), probiotics, and minerals. The second recommendation was to do a trial elimination of dairy products, based on her previous observation that people with gluten enteropathy, often cannot digest dairy foods. Going dairy-free turned out to be a positive step. Within a few weeks, I noted that my digestion was working much better. Based on this result, I was ready to follow more of the CN’s advice. At our second visit, she recommended changes to my supplementation plan. She also noted that I am one of a few patients she and the “holistic” M.D. are monitoring to see if pyroluria improves with intestinal healing. The theory is that, when “pyroluria” is actually due to intestinal damage, the pyroluria will recede if the intestine can be healed. These recommendations proved to be good ones. Within about six months, I noticed that I could skip supplement doses without negative effects. I also noticed that my previous sensitivity to dairy foods had disappeared. By the end of 2007, I was finally able to reach the correct, therapeutic dose of thyroxine that would give me a TSH just above 1.0. This ended 17 years of hypothyroidism. Today, I religiously take 118mcg of T4 each night between bedtime and arising. For me, thyroxine acts almost as a sleeping pill. And as before, I am religiously avoiding all traces of gluten grains in my diet, as I have for more than 4 years. This latter bout of illness has taught me an interesting medical fact that I hope I’ll never have to use again: the (relatively) inexpensive test for pyroluria, is an excellent way to diagnose malnutrition caused by destruction of the intestine. Summary In retrospect, the most important things I learned from this last 2 years of illness, on top of the previous 15 years, were: Every gluten-induced illness is going to be accompanied by some degree of intestinal destruction. If you have gluten problems but no obvious digestive symptoms, you probably have the silent form of gluten intolerance/celiac. It is possible to heal gluten-induced destruction, but it can take a very long time. And, you probably cannot do it yourself; you will need a RD or CN who is knowledgeable about gluten-induced destruction, to help you along. Most M.D’s don’t know how to diagnose malnutrition. In fact, most of them are completely unaware of pyroluria. However, the pyroluria test appears to be a fairly reliable way of diagnosing intestinal destruction leading to malnutrition. Of course, genetic pyroluria is a real disorder, but the utility of the test as a diagnostic tool for intestinal destruction, in people who do not have a past history of genetic pyroluria, cannot be denied. The co-existence of HAIT and “pyroluria” (malnutrition) in my case, suggests a hypothesis as to why “Hashimoto’s Anxiety Syndrome”/”Hashimoto’s Encephalopathy” occurs in some people, but not others. Obviously, HAIT by itself causes some anxiety, since ridding myself of HAIT antibodies reduced anxiety related to administration of thyroid hormone. It seems a reasonable hypothesis that any of several biochemical syndromes that are known to cause anxiety, could add anxiety to that caused by HAIT, greatly amplifying overall anxiety. Among the many symptoms of “pyroluria” (in my case, malnutrition), whose functional deficiency of B6 and zinc disproportionately affects the neurological system, are anxiety and atypical/unusual reaction to drugs and hormones. It is known that high oxidative stress can create food allergies (per William Walsh PhD of the Pfeiffer Treatment Center). Since pyroluria (i.e. malnutrition) causes oxidative stress, it is a (unproven at this point) theory that my food allergies may have been worsened by co-existing malnutrition.