• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

cyclinglady

Moderators
 View Profile  See their activity

  • Content count

    6,358

  • Joined

  • Last visited

  • Days Won

    202

cyclinglady last won the day on April 19

cyclinglady had the most liked content!

Community Reputation

960 Excellent

About cyclinglady

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Female
  • Interests
    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

Recent Profile Visitors

21,342 profile views
  1. What are you eating? Many of our DH members swear that they must eat a non-processed gluten-free diet and often have to reduce iodine temporarily (for some reason it causes issues). Please read through our DH section. Member SquirmingItch and Ravenwoodglass usually offer excellent advice. You can read some of their previous postings. Rice is safe. Buy plain rice (not parboiled or instant just to be extra safe), wash it three times while looking ( this is a RAW agricultural product which does have some arsenic) and cook it. Avoid ANY gluten free grain that is not certified with the exception of rice which is not grown next to wheat, rye or barley. NO oats at all, even gluten free oats. Once you get relief, you can experiment with grains. Of course, your rash might not be DH at all. If your diet is strict, you should consider consulting with a dermatologist and find out Exactly what you are dealing with.
  2. The celiac blood tests are good, but not perfect. Despite a decade of researchers trying to use just the celiac antibodies tests in order to avoid the endoscopy which is more invasive, the reality is that the British and American GI Associations and all the celiac centers in the world, still rely on the endoscopy for a firm diagnosis. There are reasons why the endoscopy may not be ordered. You could be at death’s door and any procedure might kill you because you are so sick. You might not have access to a GI. You might not have insurance. You might have very long wait times (e.g. areas in Canada). If you can, get it. It can set a benchmark for celiac damage. It can also discover that you might have another concurrent illness like cancer, SIBO, H. Pylori or Crohn’s. Odds are that you do not have cancer, but it has happened to members. The villi can grow back in just a few weeks. Typically symptoms can last longer usually because 1) there is a steep learning curve to the gluten-free diet and 2) damage can be systemic (e.g. neurological). Eat gluten. Plenty. Between my blood tests and endoscopy, I ate all my favorite gluten filled foods. In reality one or 2 slices of bread, (make it fresh sourdough with blobs of sweet butter, please) should be plenty. My gluten fling, was a fond farewell.
  3. Reactions to alcohol may not just be autoimmune in nature, but due to a damaged gut from an autoimmune disorder. So, hard to say what can be blamed on wine and hard liquor. I know that when either my celiac disease is triggered or my autoimmune gastritis is flaring (no known trigger), I can not drink any alcohol. I follow standard celiac recommendations usually sticking with wine or some vodka. As far as Omission beer, I am going to continue to avoid it until the research is complete. I am adhering to th Gluten Free Watchdog’s advice: https://www.glutenfreewatchdog.org/news/can-individuals-with-celiac-disease-drink-barley-based-gluten-removed-beers-such-as-omission-a-gluten-free-watchdog-special-report/ I just had a recent endoscopy that revealed a healed small intestine. I would be interested to know that if you consumed an Omission beer daily for a few months and then had an endoscopy, what would it reveal?
  4. Well, you can always post the result here. Include all the lab ranges. We are not doctors, but we can read celiac lab results. Even the pathologist’s report (exact wording) would be useful. I would definitely get a second medical opinion. So, the biopsies revealed a lactose (milk sugar) intolerance. Why would he NOT recommend going lactose free? Ugh! Take her off all dairy for a week or so. Then start adding in dairy that has the least amount of lactose like hard cheeses or yogurt. Those items through fermentation have had lots of the sugar removed by the bacteria. The last bit of dairy to add back is regular milk or ice cream. If she has celiac disease, going lactose free can help with intestinal symptoms, but the damage villi that releases the enzymes to digest lactose will still be damaged. Once a celiac heals, they often can then digest lactose again, unless you are part of the world’s population who can not digest lactose for genetic reasons (e.g. not historically herders). The med prescribed? I would get a second opinion preferably from a Ped GI. I would make sure she has a firm diagnosis for the Colitis which is commonly linked to celiac disease and may resolve on a gluten free diet. This drug is powerful and we are talking about a kid. So, post the results and get a second opinion. In the meantime, get her off lactose ASAP. I am so sorry that you both are dealing with this!

  5. No relief

    cyclinglady replied to V123's topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)

    Three weeks is such a short time to expect dramatic healing from celiac disease. The learning curve for the gluten-free diet is steep! Don’t forget, damaged areas can be missed in the small intestine because it is the size of a tennis court! If your symptoms do not improve within six months or so (not perfect, but improved) ask about IBD (Crohn’s) testing. My niece had her Crohn’s diagnosis caught by a pill camera. All other tests, including celiac disease (unlike you, both blood tests and biopsies were negative).
  6. The gluten-free diet will work. It is RARE that it does not. Cross contamination is an issue but once you learn the diet, it become second nature. If you can, get the endoscopy. Why? You can rule out other concurrent issues. Some people do not have the option due to financial constraints or long wait times (e.g. Canada).
  7. I have read that the high numbers do not necessarily coordinate with a severe damage. I just had a repeat endoscopy done and my DGP IgA was high, yet I had no villi damage. The antibodies tests are good, but not perfect. It is one reason that the endoscopy to obtain intestinal biopsies is still the gold standard. I can tell you that it is nice to have a benchmark for future reference. I was glad to see that my small intestine had healed!

  8. Don't Eat

    cyclinglady replied to rc12126's topic in Celiac Disease - Coping With

    Sounds yummy!

  9. Need help desperately now!

    cyclinglady replied to gluten-free girl 67's topic in Celiac Disease - Coping With

    Packing a lunch was what people did 50 years ago. They took lunch to work, school or on a daily adventure (called picnics). Rarely people ate out. People had dinner parties or BBQs. That was “eating out”. My Dad had an extended lunch break at school so that he could go home to eat at hot meal. That is what kids did in the city. I think you need to re-think bringing food along. Celiac or not! We would probably would not have such a huge obesity problem. Fast food or processed food has surely contributed to a nation of fat people which was rare sight when I was a kid. Start a new trend! Be cool! 😎 I reeled in my hubby as a result of a picnic lunch! I do not think I would have landed him with a fast food burger. 😆

  10. Don't Eat

    cyclinglady replied to rc12126's topic in Celiac Disease - Coping With

    Go to the grocery store, grab some wings, plop them into a hot oven, bake for about 20 minutes, pull them out, brush on some gluten-free BBQ sauce (you do not even have to make it from scratch), bake another 10 minutes or so. Not comfortable with cooking? You tube it. You can learn to do anything with some instruction from a Free You Tube video. You had to quit working because of celiac disease? Perhaps you need some follow-up celiac testing. Maybe you have developed something else or you are getting exposed to gluten. Learn about follow -up care: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Granted having to cook all the time can be a bummer. I get that. But when I am a bit down, I think of my SIL who is on chemo. Celiacs do not have it that bad when you put it into perspective. Gluten free food is yummy. I am having some fresh blueberries and vanilla ice cream now. It is already 88 degrees here!
  11. Did you receive the complete celiac panel? Some celiacs are seronegative and some test oddly, like me. I only had a positive on the DGP IgA (even on follow-up testing), yet I had some severe intestinal damage per my biopsies.
  12. I do not get it. You have had a positive and an equivocal on the panel. Okay, no positive to the TTG IgA despite having a normal Immunoglobulin A result. So what? I have ONLY had a positive DGP IgA (even on many follow-up tests after my dx), yet I had moderate to severe intestinal damage per my biopsies. You can not rule out celiac disease at this point. Go see a Gastroenterologist would be my advice. Taking medications to relieve your systems and not finding the root cause of your GERD and IBS is not the way to go. But I am not a medical doctor, just a person who values feeling good!
  13. It sure does seem like he is getting gluten into his diet. http://www.cureceliacdisease.org/faq/in-follow-up-blood-testing-why-would-ttg-be-negative-and-dgp-be-positive/ How does he feel? Was he symptomatic when he was first diagnosed? Cross contamination can be a huge problem. Best to avoid eating out until those elevations are reduced. I never had a positive on the TTG tests only the DGP. I struggled last year after taking a hit (unknown source). I buckled down and did not eat out (even at a 100% gluten free restaurant) for a year. My house is 100% gluten free as we have two people who need to be gluten free. Just recently a new study has shown that too many celiacs are getting gluten exposures: https://www.npr.org/sections/thesalt/2018/04/03/598990638/when-going-gluten-free-is-not-enough-new-tests-detect-hidden-exposure I would try to stick to non-processed foods as much as possible. I wish you both well.
  14. Good to hear that despite the negative TTG, the Doctor ordered an endoscopy. Keep in mind that not every diagnosed celiac has ever tested positive on the TTG. I personally only get a positive on the DGP, even in follow-up testing. I hope you and your mother are able to find answers to both your issues.
  15. Sure, you can do that. But give your doctor credit for trying. (I have heard much worse on this forum). Let’s say you do not have celiac disease at this time. Maybe you have Crohn’s. A gluten free diet or AIP diet (which includes being gluten free) can cause IBD (Crohn’s or UC) disorders to go into remission based on a new small study out of La Jolla in San Diego. Isn’t the goal to feel good all the time? Trying a diet over a biologic drug would be a great place to start. Then talk about antibodies testing for other AI issues that might be the root cause of your current issues. Diagnosing a patient is like an onion. You have to unpeel one layer at a time. Or think of your 5th grade science project. You picked a hypothesis and then worked through it. You did not change the variables throughout the experiment, because if you did your hypothesis might be invalid. That is what your doctor is trying to work through. Wait for the results. Make sure you have all your medical records in hand to share with the next doctor. I am a big advocate for second opinions. But if the pathologist’s reports shows villi damage, there is no doubt. No need for a second opinion. You have it....the pathologist!