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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 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 Itching 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?