• 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

trents

Advanced Members
  • Content count

    484
  • Joined

  • Last visited

  • Days Won

    1

trents last won the day on June 7

trents had the most liked content!

Community Reputation

10 Good

About trents

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Male
  • Location
    Centralia, WA

Recent Profile Visitors

7,721 profile views
  1. I was diagnosed almost 15 years ago and have been conscientious about avoiding gluten. Yet, follow up endoscopies during those first three years showed continued SB inflammation. Other issues, like elevated liver enzymes resolved, however. So there was partial victory but also some disappointment. Another impact of Celiac on my body was that my total protein and albumin levels were below normal. I suspect that was the result of leaky gut syndrome or the aforementioned stress on the liver or some of both. Finally, in the last two years those total protein and albumin levels have both crept back into the normal range. I consider that evidence of gut healing but it has been very slow. I'm in my 60's now so the old bod doesn't heal as fast as it used to and I had celiac disease for at least 15 years before the dx in my early 50's. So this whole experience has been like the rest of life, not all I had hoped for in the naivete of my youth but there has been a measure of healing, a measure of success. Complete healing in all of life's many facets awaits eternity.
  2. Bigchan, welcome to the forum! Your narrative is not an uncommon one. Many report that after going gluten free they still show inflammatory disease markers in followup testing. I wish it were the case that going gluten free is the magic bullet that we all have expected it to be at the outset of the Celiac journey. As more evidence mounts over the years from medical science studying this disease it turns out it is more complex than was first thought. Gluten may not be the only trigger of inflammation for a lot of Celicacs. And there is something called refractory Celiac disease (unresponsive to a gluten free diet, no reversal). Sorry, I don't mean to discourage you. And certainly, don't give up gluten free eating. I think there is still so much medical science doesn't know about these kind of autoimmune conditions. In the mean time, do the best you can and enjoy life. Each day is a gift. Having a condition like this can take over your life if you let it. Don't.
  3. Good point, Posterboy about the lag time between research and findings becoming common knowledge in the medical community.
  4. That article cites a pretty dated study. Doesn't necessarily make it invalid but does make me a little cautious about buying into the premise.
  5. Do you have references that support this assertion? Oats producing a Celiac reaction has always been a controversial topic, anecdotally, anyway. But as far as I know all the studies done have not supported this when cross contamination with wheat is ruled out. Here is an example from a pretty recent study: https://www.livescience.com/59002-can-celiac-disease-patients-eat-oats.html
  6. There is a question in my mind as to whether the canker sores are actually caused by your celiac disease. Sounds like the doctors pinned it on celiac disease as there was laboratory evidence proving you were a Celiac. And having canker sores is in fact one of the documented medical conditions associated with celiac disease. But there are many other possible causes. Have you had follow up lab work and endoscopy to check the response of your celiac disease to gluten free eating?
  7. Before I say anything else I just want to make sure you realize that Celiac Disease is not an allergy. Neither is gluten intolerance and allergy. I could not be sure from your question whether or not you understood this. Celiac Disease is an autoimmune disorder. People who have it get an autoimmune reaction that does damage to the lining of the small bowel when they consume wheat, barley or rye. Autoimmune disorders are where the body attacks its own tissues and is different than an allergy. With allergies the body reacts to a foreign substance as an invader and begins to attack the foreign substance but not the body's own tissues. In the case of allergies this attack of the invader may cause inflammation such as nasal discharge and congestion and swelling of the tissues that lining of the airway (which can be life-threatening) but it is a byproduct of the effort to rid the body of the invader or neutralize it. The autoimmune reaction of Celiac disease is a very different immune system process than is an allergic reaction. Gluten intolerance is neither an allergy or an autoimmune response. It is very similar to lactose intolerance in that both are caused by the lack of specific enzymes in the digestive track needed to break down substances in food. These undigested substances upset the microbiology of the bowel causing gas and diarrhea but do not attack the tissues of the intestines themselves. As I recall, my skin prick allergy testing and my blood analysis allergy testing (or one of them at least) showed I had a mild allergy to wheat but none to gluten per se. Yet, by way of intestinal biopsy I am a confirmed Celiac. Since gluten is found in wheat that really shed light for me on the fact that Celicac disease is something different than an allergy to wheat. My whole point is that skin prick testing is useless for diagnosing Celiac disease or gluten intolerance. So testing positive for allergies to wheat or even gluten says nothing about whether or not you have Celiac Disease or gluten intolerance. And in fact, there is great deal of skepticism in the medical community as to whether allergy testing of any kind (as it is presently practiced) has much value. The correlation between tests results and real symptoms experienced by exposure to the substances you test positive for is often very poor. And this is confirmed in my own personal experience.
  8. If you are not getting any cooperation from your healthcare providers you can also just try a gluten free diet for a few weeks/months and see if symptoms improve. You would need to educate yourself on where gluten is found, especially how it is hidden in prepared foods like canned soups and condiments. You would need to become a dedicated fool label reader and educate yourself on terms used by the food industry that can mask the presence of wheat, barely and rye. Because your pain could be caused by other things, some of which could be serious, you still need to stay engaged with the medical community. And do realize that if you go with a gluten free diet it would render some celiac disease diagnostic tests invalid. If you were having testing done after going gluten free you would need to start eating gluten again before the testing was done.
  9. If this is a pattern I would see an gastroenterologist but I would not put much emphasis on one incidence of abnormal colored stool. Many things we eat as well as certain medications can change the color of our stools but so can certain diseases. If this is a pattern I would certainly get liver enzymes checked and gall bladder.
  10. I tried to quit PPI cold turkey this summer. Went without them for 3 weeks and by then I thought the rebound would be past but my symptoms just got worse. I can go without the PPI for two days and the heartburn starts to come back. Not sure if a more gradual titration would have helped or not but it would have to be very incremental to work at all. And I gave up my one cup of coffee per day to help with process at the same time but began to get migraines every day. Had to go back on both.
  11. I'm very skeptical of food allergy testing. I had an eye opening experience with it when I had two different labs evaluate the same test samples but report vastly different results. I also saw poor correlation between symptoms and test results. And I think if you do some research you will see there are a number of variables that often render food allergy testing ineffective. Many or most MDs don't put much stock in food allergy test results. And what do you eat when your testing turns up 30+ foods that supposedly are fighting with your body? I'm with you on that one. It makes it pretty tough to sort out the real offenders through and elimination diet before you die of starvation. Concerning your mucous issue, have you had opportunity to spend time in another climate or sleep in other beds (dust mites) and if so do you see any improvement?
  12. So I'm not clear on a couple of things after reading your narrative. First, are you a confirmed Celiac or are you saying you are suspecting you have Celiac disease? Second, is this excessive mucous a new phenomenon after being put on the anti Gerd meds or was it present before?
  13. Sure sounds like low thyroid symptoms to me. I understand thyroid level assessment can be tricky and the tests ordered by most doctors often aren't much help. Do you have access to an endocrinologist? And concerning B12, are you taking folate? Folate supplementation can render B12 level testing invalid.
  14. Subtle D

    Long post and, excuse the pun, there's a lot to digest there! How many grams of fiber per day do you figure you are getting with all that? I would look at the 1500 mg of C you are taking. That's a lot of ascorbic acid and may be changing the PH of your gut to contribute to the soft stools. Same with coffee/caffeine.
  15. Wheat provides certain nutritional elements that would need to be compensated for after going gluten free. This is especially true with commercially produced wheat containing foods because they are "fortified" with added vitamins. Does your daughter eat healthy and does she use a quality brand gluten-free multivitamin? If you live near a Costco they sell vitamins and supplements that are gluten-free. Personally, I use their Kirkland multivitamin, B complex, B12 and D3. I also take iron. Even though I am a male and eat gluten free I find I start to get anemic if I don't take the iron. Even after going gluten free many Celicacs find their assimilation of nutrients never returns to being fully normal due to leaky gut or permanent damage to the villi or whatever. There are still things that we don't fully understand about celiac disease and going gluten-free, as essential as it is, does not necessarily restore the gut to normal health. There probably is a greater likelihood of more complete healing if the disease is caught quickly and at a relatively young age. Your daughter has that in her favor. Having said all that, I would suspect the real issue is something not related to nutrition. The fact that this menses issue started soon after going gluten free may be coincidental. And I agree with what others have said. Your daughter needs to have follow-up blood work done for the Celiac antibodies and I would also think a follow-up endoscopy is in order to see what is the condition of her villi. And recommending the thyroid check is also an excellent suggestion.