Celiac Disease and Dermatitis Herpetiformis Testimonials

ABOUT OUR PHYSICIANS: California’s Central Coast takes pride of having many local physicians familiar with celiac disease. Since our support group was implemented in 2003, we have substantially noticed an increased awareness among the general public and our local health care providers, including, but not limited to, our local gastroenterologists, pediatricians and internists.

CME Programs related to celiac disease in San Luis Obispo, Santa Maria, and Santa Barbara counties have increased dramatically since 2005. Central Coast Celiacs has been able to help GI experts who were invited to present CME approved programs on celiac disease in SLO, Santa Maria and Santa Barbara in the past. Our local support group refers our members to national celiac authorities when needed, such as pediatric gastroenterologists not available in our county. But we also know that many local physicians, including pediatricians, internists, gastroenterologists, orthopedic surgeons, dermatologists and others, are well versed on CD and DH.  We want to thank all these local physicians for their support.

Recognizing celiac disease can be difficult as symptoms sometimes mimic other disorders. The degree and type of symptoms that untreated celiacs experience vary widely among individuals. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, depression, chronic fatigue syndrome, "silent" migraine headaches that manifest in the gut, and many other conditions. Asymptomatic patients, and those presenting with unexplained elevated liver enzymes, osteoporosis, unexplained anemia, skin rashes, migraine headaches, epilepsy, alopecia and more may never think of consulting with a gastroenterologist. As a result, celiac disease could be under-diagnosed or misdiagnosed. As both health care professionals and patients become further aware of the many varied symptoms, and reliable blood tests became more available approximately twenty years ago, diagnosis rates are increasing.

We provide free CD awareness brochures from the NIH and The Celiac Disease Foundation for doctors' practices. Literature is available for diagnosed patients from the Celiac Disease Center at Columbia University Medical Center, NIDDK, CDHNF, NASPGHAN and others.

  thecentralcoastceliacs@gmail.com

 

Members Testimonials

 Commonly undiagnosed for years, the burden of living with undiagnosed and untreated celiac disease and/or dermatitis herpetiformis may cost celiacs thousands of dollars, and years of misery.

Do you or someone you know suffer from any of these symptoms? Perhaps you should exclude celiac disease by requesting a complete celiac panel from your physician. Please check below for the recommended tests.

I was always feeling fine but my iron levels were always low without finding the root cause.  I visited a hematologist, and I was told that I had unexplained iron deficiency anemia and that I just didn't have the ability to absorb iron. I eventually needed intravenous iron therapy to combat my severe unexplained iron deficiency anemia. For over 15 years, the root cause was never determined.  Finally after moving to the local area I was diagnosed as a celiac by a local doctor, a disease that I had never heard of.  I was in a state of denial at first, since I never felt sick after consuming wheat-based products, but eventually I found that I felt better and better on the gluten free diet. Of course, my anemia has been resolved and life is good! I feel healthier than ever. Female member in her 40's
 

I know my story is like hundreds of other celiac member’s stories.  It happens all the time.  My gastroenterologist diagnosed me as having spastic colon and IBS (Irritable Bowel Syndrome).  I already knew that my bowel was "irritable", but went home with that diagosis. He said the condition was chronic in nature and is aggravated by stress and anxiety. He also prescribed Prilosec for acid reflux and sent me home.  I was plagued with constant urges to have bowel movements, and I continually had pressure and stomach pain.  My GI simply told me to research where restrooms were located before leaving the house.  I was desperate to find some relief that would allow me to return to a normal function.  At work, I was known as BB, for ‘Bathroom Break’.  On my way to work one early morning I was listening to the radio news, and Central Coast Celiacs was invited on Paul Kelly’s show.  I just knew I had to get tested immediately. Astonished, my gastroenterologist mentioned that celiac disease was just a “Hollywood Trend”.  I switched doctors right away and got tested at Stanford University, where they confirmed that I had celiac disease in 2005. Since my diagnosis, and I have never felt better in my entire live. Female, mid 30's.

 

I tried the no flour, no sugar diet for about a year and I felt wonderful. However, whenever I had dinner with friends, I would occasionally have a piece of bread. The morning after I was always bloated, and my stools had a sandy color appearance. One day, I ran into a friend who had been recently diagnosed with CD. He explained some of his symptoms, and they sounded just like mine. Unfortunately, I tested negative for CD, and I called my friend to inform him. He then explained that a person seeking preliminary diagnosis must be consuming gluten until the time of testing. Back to my doctor, I explained to the doc what my friend told me and we agreed that I would start a gluten containing diet for 3 to 4 weeks and then get retested, though my pleasant doctor was reluctant and doubted it was CD. His thoughts comforted me, but I really wanted to know by getting properly tested. The second round of tests were inconclusive. My doctor then recommended a biopsy and referred me to a local gastroenterologist. By that time I had been consuming gluten for months, and even though the blood tests were still inconclusive, my GI confirmed damage in my small intestine (villi). My friend and I have shared many GF recipes and cook together often. Our wives have learned a lot of great GF recipes as well. Male in his 60s, and feeling like 40.

 

I tested negative for celiac disease. It is a long story, but I was basically gluten-free for years and I also have IgA deficiency. Therefore, since some of the blood tests are IgA based, I tested negative in the blood tests. IgG levels were high. I wasn’t ingesting much gluten and I believe that’s the reason my biopsy didn’t show damage to the small intestines. I could have had repeated biopsies after a gluten challenge, since I was told that sometimes the villi has a ‘patchy’ appearance and several samples should be taken. However, my doctor believed that I had some form of gluten intolerance. I may not be a celiac, but I certainly feel the gluten. I have been strictly gluten free since 2007 and my nutritional deficiencies are all gone. My ‘IBS’ symptoms are all gone. My lactose intolerance disappeared. My depression is all gone. My headaches have diminished. I have gained 10 pounds, which I absolutely needed. My hair has much more volume and my nails no longer have white spots. To me, that’s confirmation enough that the gluten free diet works for me. I feel happy and proud to be gluten free. Female, 45.

 

DH. I started having skin rashes on and off as a teenager. The condition worsened over the course of time, and also seemed to disappear for months and even years. For over 30 years I suffered from this, and as the rash progressed I spent more than 12 years going from doctor to doctor trying to find an explanation for my skin rash. Among other misdiagnosis: psoriasis, poison oak, shellfish intolerance, allergy to detergents, perfumes, clothing material, grass, ant bites, flea bites, hotel bed bugs… However, even taking extreme precautions I had no improvement after treatment.  One doctor thought that I must be allergic to water. The treatment: no showers. With only powder baths and no improvement, I used a real shower again and found another doctor. Everytime I made an appointment with a new doctor I felt so embarrassed. Finally, I gave up my search for a diagnosis when a doctor suggested that I was creating the itching in my mind, just to get attention from docs! His guess was that my scars from itching were self induced.  For two years, despite having horrible rashes, I avoided physicians and even wondered if I was crazy. Then in 2003, I broke my arm (osteoporosis) and had no choice but to go to the ER. That ER physician changed my life. He said: “How are you treating your Dermatitis Herpetiformis? Are you following the gluten free diet consistently?”  I was shocked.  I had never heard of Dermatitis Herpetiformis in my entire life! The ER physician explained that he couldn’t know for sure if it was indeed DH until a skin biopsy would be performed, but he felt that my rash was consistent with DH. He sent me to a dermatologist interested in DH (the skin biopsy should be done by a dermatologist familiar with the biopsy procedure and I think after I explained my luck with doctors, he didn't want to take any chances). As he explained, the biopsy should be performed on skin immediately adjacent to an area of inflammation, as the biopsy results on involved skin may be negative. My skin biopsy confirmed I had Dermatitis Herpetiformis. Interestingly, the IgA was present in the skin, but the blood test was inconclusive. The expert explained that 70%–90% of patients with dermatitis herpetiformis test positive to the celiac panel in blood tests, but that 10%–30% of patients with dermatitis herpetiformis may be IgA endomysial antibody negative and IgA tissue transglutaminase negative in serological tests. Because 10%–30% of cases of dermatitis herpetiformis would be missed on serologic screening, celiac disease would be missed if patients with DH did not get a skin biopsy. (John J. Zone, M.D. Skin manifestations of CD. Gastroenterology 2005). * Third page, upper right. I was finally diagnosed.

 

Since I lived in the Central Coast at the time, I was referred to Central Coast Celiacs. Besides going gluten free, I was treated with Dapsone (diaminodiphenylsulfone) for a while.  The rash had clearly improved within weeks but it didn't completely disappear after months after following the gluten free diet. Also, my general health improved dramatically over time. For example, all my life I had been told that I suffered from depression. Who doesn’t suffer from depression when untreated for Dermatitis Herpetiformis? The rash itches like crazy! As I followed the GF diet and my skin condition improved, so did my spirits. By the way, all patients with Dermatitis Herpetiformis have some form of celiac disease (but not all celiacs develop dermatitis herpetiformis). Female, diagnosed in her 50s.


DH. I went gluten free about nine years ago trying to solve a lot of digestive issues I had, such as heartburn, constipation, diarrhea, and more. This was a recommendation from a well intentioned holistic practitioner I consulted with. Understand that back then I had not heard of celiac disease, but had heard a lot about the gluten free diet, not knowing it was related to any disease. All I heard was how the GF diet could help people with gastrointestinal issues. I went gluten-free for eight months and felt great.

My job required lots of traveling and keeping GF was very inconvinient. I decided to quit the GF diet and for a while I didn’t feel sick at all. Then I got a very itchy rash on my face and was misdiagnosed with impetigo, which according to the dermatologist had gotten infected with “staph” when I scratched it. My dermatologist thought I was getting razor bumps. I started using an electric razor, lotions, special soaps as my doctor recommended, but nothing improved.

Along with feeling horrible all over, my face was itching like crazy. It was driving me nuts. Then I got a similar rash on my feet, between my toes, and I was told it was Athlete's Foot. But just like the face, the feet did not improve with the prescribed treatment. I decided to ditch the Dermatologist and go on a gluten-free diet on my own. The rash on my face cleared up after a few months, the feet cleared up whithin weeks. My strength improved and I was having less intestinal problems. However, once I started feeling better I convinced myself that it was a coincidence that I went GF and my skin I improved.

Every time I cheated or accidentally had something to eat with gluten in it, I would get the rash, mainly in the face. Eventually, I also got it in my chest, back, knees, elbows and legs. Finally, I consulted with with a dermatologist experienced in Celiac Disease and Dermatitis Herpetiformis. I tested positive for Dermatitis Herpetiformis through skin biopsy and to celiac disease serologically. The complete celiac panel was positive: everything was positive, including the genetic HLA. Since I already had a skin biopsy, an endoscopy procedure with a gastroenterologist (where they take a few biopsy samples of the small intestine) was not necessary. I was finally diagnosed.

I went to the Department of Dermatology at the University of Utah School of Medicine in Salt Lake City, Utah. I lived only hours from SLC at the time. I can't help but think that if I would have known about celiac disease earlier, I could have asked my doctors to order the tests for CD when I only had gastrointestinal symptoms, and maybe I would have never developed DH. I encourage everyone to promote celiac disease awareness and speak more often about dermatitis herpetiformis. Dermatitis Herpetiformis may be the only manifestation present in some patients. I would like to add that I was lactose intolerant for years and did not know that about 50% of undiagnosed celiacs are also lactose intolerant before being diagnosed with CD. I wish I would have known the lactose intolerance "clue" 10 years ago and I would have asked to be tested for CD right away, when I was told to avoid dairy products. Luckily, after 6 months gluten free, I began producing lactase again and ever since then, dairy products are not a problem. I am so glad to be diagnosed. I know that most likely I avoided further health complications related to untreated CD/DH. Male.

 

COMPLETE CELIAC PANEL

Anti-tissue transglutaminase antibody (tTG-IgA and IgG). Commonly used whether or not symptoms are present and the most sensitive test available.

Anti-endomysial antibody (EMA-IgA). Highly specific marker for Celiac Disease.

Anti-deaminated gliadin peptide (DGP-IgA and IgG). Used when tTG or EMA is negative and in cases where patient is IgA deficient.

Total Serum IgA. A very important test to resquest. This test is used to check IgA levels to exclude selective IgA deficiency that may result is a false negative test.

Anti-gliadin antibody (AgA IgG and IgA). NOT considered sensitive or specific enough for adults, but sometimes used for children under 2 because tTG and EMA antibodies may be absent. The anti-DGP test is sensitive in this group.

NOTE: YOU MUST BE CONSUMING GLUTEN CONSISTENTLY UNTIL THE DAY OF TESTING FOR THE BLOOD TESTS TO BE AS ACCURATE AS POSSIBLE. 

Human Leukocyte Antigen Testing (HLA DQ2, DQ8). Genetic testing does not diagnose Celiac Disease; its largest benefit is that the absence of DQ2 and DQ8 excludes Celiac Disease. This test is requested when the complete celiac blood panel is inconclusive or unceratin. If you have already eliminated gluten from your diet, genetis testings will identify if you carry the markers that can place you at risk for celiac disease. Genetic testing never changes, therefore, you do not have to be consuming gluten when tested. 

 

THE GOLD STANDARD TO CONFIRM DIAGNOSIS

Endoscopy procedure. Biopsy of the small intestine to check for damaged villi, perfomed by a gastroenterologist familiar with celiac disease.

Note: Please ask your gastroenterologist how many biopsy samples they will be taking to confirm or rule out Celiac Disease. Celiac experts recommend taking 4-6 samples, since the villi may be patchy.

Skin Biopsy. When Dermatitis Herpetiformis is suspected, a skin biopsy of the skin adjacent to the rash/blister is the gold standard, also performed by a dermatologist familiar with Dermatitis Herpetiformis (DH). IgA deposits are higher in the skin adjacent to the lesions. The dermatologist needs to be familiar with DH, and use the recommended techniques and methods.

Epidermal Tissue transglutaminase 3.

Note: According to the experts, approximately 10-30% of patients with DH may test negative serologically. Since the IgA deposits may be present mostly in the skin, these celiac patients may be missed if their skin rash is not linked to CD and/or the skin biopsy is not performed properly.

NOTE: YOU MUST BE CONSUMING GLUTEN CONSISTENTLY UNTIL THE DAY OF TESTING FOR THE BIOPSY PROCEDURE TO BE AS ACCURATE AS POSSIBLE. 

 

 

 

 

 

 

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