Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

lcarter

Advanced Members
  • Content Count

    85
  • Joined

  • Last visited


  1. We are living most of the year in PANAMA (in Panama City) now that we are retired. We visit the kids and grand babies in the US two times a year, Spring and Fall. It has been interesting living in a different culture and attempting to learn a new language, Spanish. Since I am gluten and dairy free, food also has caused some adjustments. The traditional Panamanian diet is based on rice, meat or fish, mostly roots or squash vegetables, and lots of tropical fruits. So, there's a lot that's safe here to eat. However, Panama is very much a melting pop of cultures from around the world because of the Canal, and so are the available foods and restaurants. The supermarkets, very similar to any of those in the US, carry quite a variety. But, I find I need to go to a number of different places to get what I need. I find that Ribba Smith (chain of stores all over town), and Super Kosher Deli (bottom floor of Multicentro Mall), and one small "health food" store in Paitilla called Organica, are the best places to shop for specialty items. I also, can find some things in El Rey and Super 99 (especially tapioca/yuca flour). There are NO gluten-free dedicated bakeries here, so if you want bread you will need to bake it yourself. Items come in by ship through the Canal, so at times there may be stretches when items are missing from the shelves. Plus, there is not the variety of flavors or bands that are available in the US. So, we pack very light when going to the US and plan to do lots of shopping to bring things back. Medical care here is excellent, and in some ways we are finding BETTER than what we experienced in the US...certainly a lot less expensive! There is much medical tourism because of this.


  2. TiffLuvsBread, my gosh, you sound like you are having classic seizures. Have you been to a neurologists? They usually do an MRI and an EEG to check brain waves. Mine showed some slight calcifications and irregular variations in brain waves in the area just behind my right ear. Two different neurologists have dx'd it as either as Simple Partial Seizures or Migraine w/o Headache. One was leaning toward SPS and put me on a seizure med which did help to slow down the frequency or the aura episodes. Then the newer neuro, a few years later, said, "No, I think it is M w/o H", and took me off the medication. That was about 1 1/2 yr ago...I have been gluten-free for 3 1/2 yrs now, and haven't had but 1 mild episode during that time. So, who knows? Here is the article I found:

    VISUAL DISTURBANCES REPRESENTING OCCIPITAL LOBE EPILEPSY IN PATIENTS WITH CEREBRAL CALCIFICATIONS AND COELIAC DISEASE: a case series

    Journal of Neurology Neurosurgery and Psychiatry 2004;75:1623-1625


  3. I just recently discovered that my visual auras [DX'd as either Simple Partial Seisures or Migraine w/o Headache] are probably related to the Celiac - I found an article in a Neurology journal recently that made the connection and made me wonder if anyone else out them has had similar experiences in connection with having Celiac. This is the first mention I have seen on a blog. Wow, I never would have guessed that the auras and Celiac are related. None of my doctors ever even mentioned the possibility. But, come to think of it, I have not had an episode since October 2008, and it was only one by itself and very mild. I was having them in clusters of 2-4 about every 3-7 months before that. I started the gluten-free diet about 3 yrs ago. Hummmm!!!!!


  4. I'm another one of those "unofficially diagnosed celiacs". Out of total and complete frustration with doctors, I finally diagnosed myself a few years ago going on a gluten free diet myself. I realized that over the years I could pretty much check all the symptom boxes. I have been to soooo many doctors (including 3 gastroenterologists over the years) who were clueless and told me all sorts or things..mostly IBS or just a "nervous stomach", stress, even one idiot said it's "psychosomatic illness"(of course, all this with NO celiac disease testing). When I was an infant a pediatrician had the gall to tell my Mom that she was holding me wrong to feed me because I was having projectile vomiting, diarrhea and rashes...but, then that was in 1942. Who knew? Years past, and I suffered all the usual symptoms, but no doctor ever even mentioned Celiac. They just said I was sickly, underweight, and seemed to catch the flu a lot! In 1970, at 5'3" I weighed 98 lbs when I got pregnant the first time. I had such sever episodes of diarrhea and vomiting that they feared I could lose the baby. Fortunately, I didn't. Then, an allergist did skin testing and a few diet challenges. We found out all the dairy factions was problematic. So, no more dairy protein or lactose -- that was 1975. Things improved...but not completely. Three more little folks came along; but during that time I continued to develop more symptoms. I was put on therapeudic levels of vitamins and minerals because of blood tests. Also, I began having sporadic episodes of visual auras without the headache (recently there have been medical articles published that associate similar episodes with Celiac Disease in some patients who show occipital calcifications and spikes, as I do, on EEG and MRI tests). Then, there was carpel tunnel surgery on both hands for peripheral neurological problems, and an ER visit for intestines almost totally swollen shut (the hospital gastro wanted to remove part of my colin...fortunately, I declined!) That's when the internet search popped up with celiac disease and I begun the gluten-free diet on my own. Three months later my GP tells me he wants to run a Celiac blood panel...when it comes back negative he tells me, "there's no way you have celiac disease or something would have shown up." (I tried to tell him that was because I am careful and compliant with the diet). He would not authorize any more test except a colonoscopy, which I tried to explain is not diagnostic for celiac disease). Went to see the gastro anyway that he sent me to for the colonoscopy, but he was clueless too! Incredible!! That was only 5 yrs ago. Now, I am going to a new family doctor who thinks I need an "official diagnosis". HA! There is no way I would put myself though all that agony again just so some yoyo can say, "ya, you got it"! The gluten-free diet has all but cured me...plus, I haven't had a visual aura either in over 2-1/2 years (and, that last one was very mild) - I have been on the gluten-free diet for 3+ yrs I am convinced that I have Celiac since the diet made such a dramatic difference. What is the point of testing now?


  5. It took years for me to be finally diagnosed: As an only child, I had a problem with dairy as an infant, with projectile vomiting after bottle feedings (Mom didn't breast feed), and was continually underweight. I was very sickly growing up with frequent flu like symptoms, yet no doctor suggested food allergies or intolerances all those years. At 27, I became pregnant for the first time. I weighed only 98 lbs at 5'3". So, the ob-gyn told me I needed to gain weight -- he recommended lots of high calory foods which usually seem to involve dairy. I did as told and got so ill they were afraid I would loose the baby. He sent me to a gastroenterologist who said, "oh, you have lactose intolerance, just limit the amount of dairy you ingest." That wasn't the answer! Out of desperation a nurse friend suggested an allergist who was also knowledgable about food problems. It was a long drawn out process -- but this wise, almost retired dr finally figured out that I was milk protein intolerant and could not tolerate even the faintist hint of milk in foods or meds. However...there was still something else which didn't show up on any of his tests. So, I continued to have minor (in comparison) problems thoughout another 15 yrs. It took an emergency trip to the hospital (after eating amost a 1/2 box whole wheat Tiscuits on an airplane flight), in sever pain with the small intestines almost swollen shut, and the surgeon threatening to take out part of my intestines, that it was ever sugested that it could possibly be gluten. A couple of months later I had a repeat experience and took seriously the idea of gluten being the culprit. I went on a gluten free diet imediately. I kept feeling better and better until all my symptoms gradually went away. My gp after a few months did a blood test for celiac when he found out I was eating a gluten free diet--of course, the test was negative. Then, he suggested that I have an endoscopy, but I refused as I knew these tests are not 100%. Besides, what was the point? The diet worked! Fortunately, I have to be such a bear about what I eat because of the dairy protein intolerance, gluten wasn't that hard for me to eliminate as well. It's been over 2 yrs now and I remain absolutely symptom free! :D


  6. Did you know that if you have IgA Deficiency the blood tests for Celiac may be false-negative, or at the best inconclusive? That's because IgA is what is used as the a marker for the current bloods that are done. Note the 2 following articles:

    1) DO WE NEED TO MEASURE TOTAL SERUM IgA TO EXCLUDE IgA DEFICIENCY IN COELIAC DISEASE?

    AU Sinclair D; Saas M; Turk A; Goble M; Kerr D SO J Clin Pathol. 2006 Jul;59(7):736-9. Epub 2006 Feb 17.

    "Screening for IgA deficiency in patients with coeliac disease is essential because of the increased incidence of IgA deficiency associated with the disease, which usually relies on the estimation of IgA levels in each case."

    2) WHAT BLOOD TEST HELP DIAGNOSE CELIAC DISEASE?

    Bonzo�K.�Reddick,�MD

    Department of Family Medicine, University of North Carolina, Chapel Hill

    "Two to 3% of patients with celiac disease have selective IgA deficiency. These patients often have falsely negative serum IgA assays (for EMA, tTG, and AGA), so IgG is a diagnostic alternative. In a cross-sectional study, 100% of 20 untreated celiac disease patients with IgA deficiency had positive IgG tests for tTG, AGA, and EMA despite negative IgA tests for the same antibodies. Eleven patients with celiac disease and no IgA deficiency all had positive tTG, AGA, and EMA tests, whether testing for the IgA or IgG forms."