• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

  • Days Won


cap6 last won the day on March 25 2016

cap6 had the most liked content!

Community Reputation

86 Excellent


About cap6

  • Rank
    Advanced Community Member

Profile Information

  • Gender
  • Interests
    Diagnosed 3/3/10. Finally (!) well and loving life! I kayak, walk, rv, do crafts & love life with my partner of 18 yrs & 3 our furkids. Loving this new life of ours in Central Oregon.
  • Location

Recent Profile Visitors

18,289 profile views
  1. Gluten withdrawal is very real. The length of time varies from person to person. How long were you sick, how severe, your age. All factors. Give yourself a couple months. I would also cut out processed foods, at least until you heal. Pure, whole foods are best. If it has ingredients - stay away.
  2. Have your iron levels been checked.
  3. Very interesting post! When first diagnosed my ferritin levels were so low they talked about iron infusions. Lucky to bring it up to acceptable levels with prescription iron supps. On and off through the years I would feel the old tired feeling and go back on the iron supps. Flash forward 8 years and I had those old tired feelings again so went in to have my irons levels tested. This time my ferritins were 1200, normal should be about 50. Seems I have genetic hemochromatosis, an inherited disease (a gene from each parent) where my body keeps on making too much iron., Now I have to go in for weekly bloodletting of 1 pint a week until the levels go down , then monthly maintenance blood lets for life. All of this said, I would find a good hematologist to assist you. Don't mess around with iron!
  4. There are some that may not agree with me, however, here goes...... Beans (lentils included), oats, quinoa can be difficult to digest. They can also cause glycemic spikes. I am not saying not to eat these items, just be aware, especially if you are fairly newly diagnosed. Eating difficult to digest foods can cause glutened type reactions. Everyone is different and our reactions are all different. 8 years and I still can't eat oats. It took me (and I am older......) about 3 years before I could eat beans without the "glutened" feeling.
  5. Some time back I met an elderly lady that was one of the banana babies. She had recently been rediagnosed with celiac. It is amazing at the strides that have been made in just the 8 years since I was first diagnosed. Hope for the future that as many won't endlessly suffer.
  6. As was explained to me - Your gut heals and yes, you probably could eat gluten again and not feel any ill affect, for a while. However....! The damage is starting all over again. Like picking a scab off of a sore. Sort of a nasty comparison but accurate. Celiac never goes away. Google the banana babies. Very interesting as it fully explains why celiac was once thought to be a childhood disease,
  7. Ovens?

    I wouldn't worry about the oven. We moved in a rental house short term while waiting for our current home to go through and I wiped out the oven and then used it. No problems. When visiting a friend who cooks pies all the time I just pop a loose piece of tin foil over my stuff. I think covering the stuff is more for my mental health than anything else!
  8. Wouldn't! Couldn't! Shouldn't! Oh my! I hear what some are saying about keeping areas clean, but no way. I get not wanting to cook for a big group but a couple pretty easy, and cost effective, thoughts are a simple crock pot or two of chili, taco bar, potato bar or a salad bar. I just did a Xmas party for 22 people, only 4 of us are gluten free, and did crock pots of chili. for bread I bought gluten free hamburger buns, sliced them and then quartered them. It made great bread garlic bread..
  9. Interesting on your ferritin levels. When first diagnosed, in 2010, I was very low iron and I was started on iron supps. Fast forward 7 years and my iron levels were at 1,200! Just diaqgnosed with genetic hemochromatosis, a genetic iron overload. Now starts the struggle to lower the iron levels with weekly blood draws of 1 pint of blood. I have the same symptoms of exhaustion, no energy, constipation as when I was low iron. Sigh!!!!! No solution for you, just sympathy!!!
  10. Flu Shot?

    Flu shots, as per my doctor, are safe. As a rule I never get them but only because I rarely get the flu. Think the last time was about 10 years ago. I am considering it tho this year as I was recently diagnosed with Hemochromatosis (along with the celiac of 8 years). The dr thought it might be a good idea since my body is already fighting with this new disease.
  11. Hi ~ Haven't been on site for quite awhile now but back and searching for answers! I am almost 8 years celiac, totally gluten free, paleo diet for past 4 years, and yippee, now I find that I have Hereditary Hemochromatosis with genes provided by both parents. (thanks mom & dad!). My ferritin levels are at 1200, should be 50, and am currently doing the weekly blood letting. Sigh. Just feel like I am getting weaker and weaker. Muscle and joint pains, my vanity is shot as hair and eye lashes are falling out. Feeling quite like an ugly sloth. How was that for a Pity Party??! Basically just looking for anyone else out there going through this and any words of advice. Help????
  12. Dr. Newton is affiliated with the Wm. K. Warren Medical Research Center for Celiac Disease. The mission of the Center is to Advance the knowledge of celiac disease pathogenesis and to develop novel diagnostic and therapeutic advances, Increase the medical and local community's knowledge about celiac disease, and Provide expert clinical care services to optimize health and quality of life in patients with celiac disease. As of 3 years ago (we have since moved from the area the Celiac dept there gave workshops and other training sessions. Def check it out. Excellent facility!
  13. There is no "standard" time line. Everyone is so very different. Age, degree of illness, surrounding factors of life, it all counts. You do your very best, read suggestions and take from that what you feel would work for you!
  14. I just turned 65

    I was diagnosed when I was 59, I am now 66. I suspect there were problems all my life as I have always had constipation, tummy issues etc. That said, yes, given our age, we have messed up our body. However !!! Good things can and do happen! Our body can heal. And it will. It may take longer for those of us that are a little older but it will happen. Not to sugar coat anything, but for me, it took about 4 years before I felt really well. Before I felt like my system was "working" properly again. Somethings never heal completely, like I will always probably suffer with low iron/energy, but stick to the g.f. plan and you will heal, you will feel better. Just a side note, if you can, try to stick with good old-fashioned plain foods as much as you can. Stay away from processed foods. You will heal faster. Processed foods have so many ingredients in them that just aren't healthy. Your husband sounds like a supportive guy!