Member Testimonials...typical personal histories

Not feeling well and wondering what it is?  Read this section to hear some of the typical stories that are all too common to celiacs.  You are not alone, and remember that there are very few conditions where you don't need a medication to get better.  For a celiac, all you need to do is to go gluten-free!

"I was always feeling fine but my iron levels were always so low without finding the root cause.  I eventually needed intravenous iron to combat my anemia but again the root cause was never determined.  Finally after moving to the local area I was diagnosed as a celiac, a disease that I had never heard of.  I was in a state of denial 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......anonymous member, female, 30's

"I had been from doctor to doctor trying to find out why I constantly had headaches and spotty memory periods.  After years of hearing it was nothing from physicians, I read an article on Celiac Disease.  After going over my case with my GP, my concerns were warranted enough for the physician to order the necessary serology tests.  Sure enough, it came back positive and have since gone gluten free.  It is a long process to return to a 'normal' state but I feel better and everyday I am stronger......anonymous member, male, 50'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).  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 a constant urges to have bowel movements, and I continually had pressure and stomach pain.  My doctor simply told me to research where restrooms are 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.  It’s been two years since my diagnosis, and I have never felt better in my entire live......anonymous member, 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 diagnosis must be consuming gluten until the time of testing. Back to my doctor, I agreed to start a gluten containing diet for 3 to 4 weeks and then get retested. This time, my tests were inconclusive. My doctor recommended a biopsy, which confirmed damage in my intestine. My friend and I now have gluten free picnics together......anonymous member, male in his 60's, 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 the blood tests are IgA based and I wasn’t ingesting much gluten, I believe that’s the reason my biopsy didn’t show damage. I could have had repeated biopsies, 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 for 5 years and my nutritional deficiencies are all gone. My ‘IBS’ symptoms are all gone. My lactose intolerance disappeared. My depression is all but 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......anonymous member, female, 45

"My child was 18 months old and not thriving.  She was irritable, cried often, and always refused to eat.  She alternated between diarrhea and constipation, and my once alert baby became withdrawn.  I took her to her pediatrician several times as she continued losing weight. Her belly protruded at times.  After a repeated bout of diarrhea, our pediatrician wanted to admit her to a hospital for ‘further testing’.  I got the feeling he thought that I was somehow doing this to my child.  I called a friend of ours who is a pediatrician and explained the whole thing.  He advised me to call the office back and request that a pediatric gastroenterologist in Los Angeles see my child.  She was diagnosed with celiac disease at age 2.  Her sister, age 5, tested positive as well, despite having no symptoms whatsoever.  Neither my husband nor I have celiac disease. It can definitely skip generations!  My children are both healthy and growing well following a nutritional gluten free diet......anonymous member’s Mom, mid 30's

"I was 40 pounds overweight. I read an article on celiac disease where Isabella mentioned that gluten could cause weight lose, or weight gain. After reading the article, I came to the realization that every time I ate pasta or breads I got stomachaches and felt bloated. My face looked puffy all the time. I had thyroid problems, vitamin A and B12 deficiency, and pernicious anemia. I also had acid reflux, and I was diagnosed with IBS four years ago. My hair was thinning considerably, and I had severe sinus problems. Over the last ten years, I had been diagnosed with lactose intolerance, could not tolerate beef, corn, shellfish, or nuts. I was also allergic to pollen, dust, cat, and dog dandruff. Consequently, after I read the article on CD, I went to my doctor and requested a complete celiac panel. My doctor refused. He said “I did not fit the profile”. He explained that people who suffer celiac disease lose weight; they certainly would not be gaining weight. I explained that I was told that some people never lose weight, and that I was probably overeating because my body was starving without absorbing nutrients. I was reassured that he knew enough about celiac disease to help me save my time and money. I was comfortable with his explanation. However, I moved out of the county a year later and had to switch doctors as a result. This doctor did test me for celiac disease without me having to even request it. It turns out I do have celiac disease. I thought Central Coast Celiacs would be happy to hear the news. Since I went gluten free, I have been eating much less and choosing healthy food groups. I have lost 20 pounds and I look younger than ever. All my nutritional deficiencies are gradually improving, and best of all, my other food and environmental allergies are all gone!......anonymous member, female, 40's

“For over ten years, I went from doctor to doctor trying to find an explanation for my skin rash. Every time I went to a new MD, I was given a different ‘diagnosis’. Among others, I was told that I was making everything up in order to get attention from the docs. One physician even went as far as telling me that the scars left on my skin were cigarette burns…and I don’t even smoke! I was also told that I had Obsessive Compulsive Disorder and therefore, my skin rash was self-inflicted. My diagnosis was ‘imaginary’ itches. One dermatologist said to me “the itching is only in-your-head….get over it!” However, my favorite was yet another dermatologist. He concluded that I must be allergic to water. The treatment: No showers. I took powder baths forever, yet the rash did not go anywhere. Finally, one doctor knew the typical manifestations of my condition. Twelve years after the first onset, it was my lucky day. I went to the ER for a broken arm (and yes, I have osteoporosis). There, the ER physician noticed that my rash was consistent with Dermatitis Herpetiformis, a skin disease that some patients suffering from celiac disease develop while ingesting gluten. I had never heard of CD or DH in my entire life, let alone gluten. He spent time explaining everything to me. Gluten was first described, the autoimmune reaction, my rash patterns, following a mirror image in my arms, legs, buttocks…everything he said was like music to my ears. I kept saying to myself “Finally, this doctor knows I am not crazy”. Knowing that my mental health was properly understood was very important to me, and after he was done explaining, I told him all I had to go through. I was actually suffering from depression at that time, and cried while I spoke. The ER physician said to me “Considering your case, let’s suppose you are ‘crazy’…who wouldn’t be crazy? This rash would make anyone mad!” A skin biopsy confirmed it. Be aware that blood tests, even while ingesting gluten, may not be as accurate on people suffering from DH - the skin manifestation of CD. Dapsone alone did not do anything for me (I didn’t want to follow the GF diet at first). Only when I finally went strictly GF for two entire years, the rash disappeared. Thanks to this brilliant ER physician, I finally got a diagnosis. My depression disappeared, and I gained my dignity back when I was able to explain to other doctors that I really had a ‘real problem’ called Celiac Disease and Dermatitis Herpetiformis. CD/DH awareness is extremely important. For obvious reasons, pharmaceutical companies are not behind CD. This is why everyone should help spread the word of Celiac Disease and Dermatitis Herpetiformis. If I would have heard of it on the news, at the doctor’s office, etc, I would not have suffered needlessly for over ten years.” anonymous member, female, mid 50's

Central Coast Celiacs provides basic information about Celiac Disease/Dermatitis Herpetiformis. Physician packages are also available upon request. Information shared by this support group does not constitute medical advice. Betty Guthrie and Isabella Porter are not physicians. Central Coast Celiacs does not recommend initiation of a gluten free diet without first consulting a physician familiar with CD/DH.