Jump to content
  • Sign Up

All Activity

This stream auto-updates     

  1. Today
  2. Thanks Elrond for your clarification. I’m Celiac and with 14 years of misdiagnosis my career was seriously disrupted and I just don’t trust others to be as vigilant as I always try to be. Perhaps a residential setting is different in the US. I was always able to microwave, grill on a George Foreman grill or make sandwiches, eat fruit, veggies, nuts, salads etc in my dorm in the UK or ask the kitchen to “heat up” a frozen or prepackaged meal or soup for me. That way I never had to worry about cross contamination. I totally agree that our condition warrants serious attention from the institutions but I also worry that the gluten-free “fad” has created a double edged sword. It has given us more choices on the one hand but not all of those are actually “Gluten Free” because of where they are manufactured and the possibility of cross-contamination. Also, the growing numbers of people choosing a gluten-free diet with no consequences can sometimes lead to less attention being paid by the food preparers to “getting it right”. This is just my observations being Gluten Free now for 17years.
  3. thank you Posterboy for your reply. I already stopped my PPIs when I started my gluten free diet, and I feel a better, still having little acid reflux from time to time... I just need to be patient...
  4. Thank you cyclinglady for your reply. This morning I already had my testing done... and I have decided to go back to Gastroenterologist when I get my results.
  5. Hashimoto’s can be pretty easy to diagnose. Just have any doctor run a thyroid panel and include thyroid antibodies, especially if he or she can feel thyroid nodules or an enlargement. I have not heard of adrenals being involved or destroyed by Thyroid antibodies....maybe another autoimmune issue like lupus? https://www.thyroid.org/hashimotos-thyroiditis/ https://www.verywellhealth.com/adrenal-fatigue-exhaustion-3231648 Fatty liver is another easy to run blood test. Fatty liver can improve by avoiding excess sugar (specifically corn syrup) and/or alcohol. http://sugarscience.ucsf.edu/the-toxic-truth/#.XL6OHRplChA https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893377/ Did you also get an endoscopy? I am confused. The title post says May 2 as your endoscopy, yet your doctor recently did a colonoscopy? Why not together to save prep and surgery time, etc. ? If negative for celiac disease, then have them rule out Crohn’s. My niece had her Crohn’s diagnosis caught using a pill camera as the damage was out of reach of both scopes. Just something to consider.
  6. Thanks this was helpful. I love my PCP she is wonderful luckily my appointments are happening pretty quickly so I’m not too worried.
  7. Ugh! Primary care physicians! Can they at least take the time to Google before offering recommendations that they know nothing about? Yikes! Consider a new PCP! What else might this doctor miss? GFinDC is correct about the times needed to do celiac disease testing. Unless you live in country that has very long wait times to see a specialist (e.g. UK or Canada), stay on gluten and get that endoscopy done as soon as possible. Going off gluten and then reintroducing it can be extremely .....awful. Some members did just that and could not even stand being on gluten for a few days and had to give up. They are permanently in diagnostic limboland unless they have a nice doctor who will give them that diagnosis without the intestinal biopsies. But then, if you get that sick, you know for sure Gluten is the root cause. Just do not plan on a nursing home, jail or college housing to accommodate you in the future. Yeah, kind of out there...but ”nicer” people have been arrested for little things like lying about their kids sports abilities and cheating on SAT and ACT scores to get into a university. Bet they will not get gluten-free food in the Federal Prison system. I took seven weeks before I had my endoscopy due to work constraints. Anemia was my only symptom, so I took the time to indulge in all my old favorites (home baked goods, bakery items, food at top restaurants, and packaged process junk food. I seriously consumed a loaf of sourdough a day! By the time I had my endoscopy, I was sick. Sicker than just anemia. Made it very easy to give up gluten for life. I had no doubt that my diagnosis was correct. None.
  8. I only had a positive on the DGP IgA, even on repeated celiac panels. I have NEVER had a positive on the TTG tests. The TTG test is good and catches most celiacs, but not all (like me) and it is cheaper to do just one test instead of the complete panel. (It is always about the money.....) My intestinal biopsies revealed some pretty severe damage. And then there are some celiacs (about 10%) who never have a positive on ANY of the celiac blood tests. The blood tests are great for screening, but intestinal biopsies remain the gold standard as your GI indicated. I guess you could have a repeat blood test, but insist on the complete panel: DGP, TTG and EMA (IgA and IgG versions). Include the Immunoglobulin A test too which is used as a control test when trying to help diagnose celiac disease. For example, if you are naturally low on Immunoglobulin A (IgA), then the TTG IgA, EMA IgA and DGP IgA tests are not going to work. You would have to rely on the DGP IgG and TTG IgG tests provided you are not one of those 10% celiacs who do not have positives on the celiac panel. Only you can decide if it is worth getting back on gluten because you and your GI have the whole health history. The genetic test? What if you are one of the oddballs who do not have the common genes? Researchers were so sure they had identified all the genes, but guess what? They have not. Kind of like when they thought only those of European decent could develop celiac disease and now it is found in many areas of the world. Need more proof? Feeling better on the gluten-free diet. Give it time though.......most of us took a year or longer to really feel normal. You might want to ditch the dietician. Unless she or he has celiac disease, they should not question the GI’s diagnosis. If she was wrong about being able to have celiac disease without a positive TTG, she might not know enough about the gluten-free diet. Yikes! She could keep you sick!
  9. Hi, The gene testing does not require you to be on a gluten diet. The blood test and the endoscopy do though. You might be able to get a positive blood test if you've only been a couple weeks off gluten. But you'd need to get your blood drawn right away. Since medical tests are expensive it might be better to go ahead and start eating gluten again now for the testing to have the best chance of detecting a reaction. The ttg is just one celiac test. They also can do the DGP IgA, DGP IgG, EMA and total IgA tests. That combination is sometimes referred to as a celiac panel.
  10. Hi Amy, Yes, you need to be on a gluten diet for the testing to be accurate. Many doctors are not aware of proper celiac testing requirements and will tell patients to go gluten-free before testing is done. Going gluten-free ahead of testing can and often does interfere with getting accurate test results. You should be eating gluten for 2 to 4 weeks prior to an endoscopy and 12 weeks before a blood test.
  11. Hi, I'm in Canada and had a lot of trouble finding beans initially. I use Unico canned beans, and their other products that are CCA certified (canned tomatoes, pizza sauce etc.). I am careful to look for the symbol as we sometimes get cans manufactured at their US plants, which do not have it. Unico does dried beans as well that are certified. There is another major brand that has their dried beans certified, but the name escapes me at present. One or the other is usually available at most major grocery retailers.
  12. Edgymama, Don't do anything different before your Endoscopy so you can have a baseline. I found this approx. 5 year old research recently about IBS that might help you entitled "Tryptophan: ‘essential’ for the pathogenesis of irritable bowel syndrome?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ It takes 15 or 20 years for doctor's practices or clinicians to catch up with the latest medical research. Then try getting foods high in tryptophan in you diet. https://www.livestrong.com/article/247974-list-of-foods-high-in-tryptophan/ It can also be taking by supplement ...it is one of the 9 essential amino acids which means you must eat it everyday or your body can't synthesize it. Luckily it is a component of many healthy meat proteins. ...like chicken and turkey. .. and in many healthy plant proteins like Nuts and Seeds. Tryptophan is also important in the synthesis of Serotonin which might help take the edge off. I hope this is helpful but it is not medical advice. Posterboy,
  13. So I recently tested positive with a blood test. I was seriously surprised because I thought I had been eating gluten free but clearly I had missed something that contained gluten. I am waiting for my next appointment coming up in 3 weeks to start to full process of diagnosis and I was told by a friend that I would have to reintroduce gluten for a set amount of time prior to the endoscopy? Even though my primary doc told me to eat gluten free should I start introducing it back now even before my initial consult? At this point I do not have a day set for the endoscopy. amy
  14. itsme42, If it is truly yellow and not just clay colored (or earth colored which is normal) you might have a problem. Here is a couple of charts that might help you. https://www.google.com/search?q=stool+color+chart+pictures+for+adults&tbm=isch&source=iu&ictx=1&fir=8m2odvTyvn8RlM%3A%2C8Dldcwe5EPe7BM%2C_&vet=1&usg=AI4_-kTFSSx4h0PbzLfJ50x8jWqZb_7nMQ&sa=X&ved=2ahUKEwii6L7xieXhAhUMLK0KHaDWCkgQ9QEwAHoECAgQBA#imgrc=8m2odvTyvn8RlM:&vet=1 https://www.google.com/search?q=stool+color+chart+pictures+for+adults&tbm=isch&source=iu&ictx=1&fir=8m2odvTyvn8RlM%3A%2C8Dldcwe5EPe7BM%2C_&vet=1&usg=AI4_-kTFSSx4h0PbzLfJ50x8jWqZb_7nMQ&sa=X&ved=2ahUKEwii6L7xieXhAhUMLK0KHaDWCkgQ9QEwAHoECAgQBA#imgrc=UmbCjZzJo1WudM:&vet=1 All I did was a google search for these ....but many people don't know these charts exist. There is also a Bristol Stool chart that might help answer some of your questions. I would try taking a H2 blocker (ending in "Idine" like Ratidine etc.) instead of a PPI if you can for your GERD/Heartburn....PPIs can be notoriously hard to quit cold turkey. Just quickly swap over to something like Zantac 150 twice day. .. and it will give you options of stepping down in doses to get you off the PPIs before you take them too long! Here is why you should not take PPI's long term ... more than 6 months max.... https://www.drugwatcher.org/nexium-lawsuits/ Try this dose 150mg or similar product (H2 reducer) for 2 weeks then you can step down to 75mg morning (cut pill in half) and 150mg Zantac (Rantidine) at night until you have found a balance that works for you....reducing all your CARBS not just gluten from your diet will help the GERD ....because CARBS ferment.... I hope this is helpful but it is not medical advice. Posterboy,
  15. Hi, Back in January I'd had the TTG blood test done and it came back negative (while still eating gluten). Fast forward to now, I had an endoscopy this month and last week the results came in positive for celiac, so I began going gluten-free. After seeing a dietitian, it was brought up that it was atypical to blood test negative and then have the biopsy be positive, and that I should ask my GI. I did that, and the GI said the biopsy is the gold standard, but that since I got the blood test at a different location, that I should schedule another blood test at the same location of the endoscopy, as well as checking "celiac genetics" - which I would need to resume consuming gluten for. Obviously my GI is a doctor for a reason and I should heed her advice, but if the biopsy is the gold standard, I'm curious as to whether or not it's even worth getting those other (re)tests, as I'm loath to start consuming gluten again to further delay my recovery. Anyone been in a similar situation?
  16. Yesterday
  17. To All, This is good research! I had recently ran across the Kynurenine (KYN) pathway in my own research. It is now been shown as the pathogenic cause of IBS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ And even earlier than that it was linked to Celiac disease Circa 2007. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1941917/ this research confirms that AGA IgG in Schizophrenia patients are linked conditions in Celiac disease. https://insights.ovid.com/crossref?an=00006842-201610000-00007 Maybe other's will run across this research and bee helped. I am never surprised when I find earlier research has been done on a topic but always surprised nobody seems to know about it....yet it has been a couple plus years since the earlier link to AGA IgG and Schizophrenia symptom's in Celiac's has been established as related. This is not medical advice but I hope it is helpful.. .and it doesn't take another 10 + years (Circa 2007) for doctor's to recognize this connection... of the Kynurenine (KYN) pathway as a regulator of immune response in Celiac's. Posterboy,
  18. Makes for a bit of a gritty gravy, the egg yolk method works well. Coconut flour general rule is 1/3 the amount vs flour. It works GREAT for making taco meat roux, IE add in 1-2tbsp with some stock and seasonings after browning the meat, garlic, onions and this is how I recreated my mother's taco salad meat. The egg yolk method, take your drippings/stock and run through a wire mesh into a pot assuming you have 20-30oz as I did. Reduce til you have 16oz, then in a small bowl whisk 2-3 egg yolks, add 1tbsp at a time of the stock to the bowl with yolk stirring constantly until you get about 1 cup of the mix then pour back into the pot and simmer over low til it thickens. Made a good brown thin gravy.
  19. Sorry to hear all but corn are causing you issues. I have problems with gluten and corn. I hope you get some answers and clarity soon. I have had vitamin D, folate, and B12 issues in past too. In addition to multivitamin i take liquid magneiusm, liquid vitamin d and sublingual b12 if I get cc as I don't seem to adequately absorb them by capsule. Gluten attacks many areas for me just not intestines. My stomach and esophagus visually were noted as inflamed as well on endoscope after my gluten challenge. Good luck
  20. Either way I'm hungry now!!!! In this house the spouse loves garlic. So the entire bulb would work😀. I am going to steal that thicken the stock with coconut idea sometime in the future.
  21. Well I am back after continued grain issues....not just gluten but pretty much ALL grains I have found irritate me. Corn is tolerable it seems in small doses. I am one of those that has been on the warpath for answers I would say on and off for over 15 years. Blood tests have been negative. I have IBS say the doctors. Met with a functional medicine doctor at the start of this year as I decided THIS would be the year I get answers. She suspects Hashimotos but Adrenal fed as opposed to thyroid. Also mentioned I may have fatty liver. Blood tests only showed low Vitamin D this year. I have had anemia show in the past. As soon as grains are in my diet I BLOAT, have unpredictable D issues with my IBS C/D, and heartburn. As soon as I took grains out of diet the heartburn disappears within days (I am talking I can have red wine, onions, peppers and have NO issues with heartburn-but as soon as grains are in the mix- WHAM pass me the tums!). So I went without grains from January to start of April. Bowels were finally normal and predictable and heart burn gone. Gastro doc ordered colonoscopy and endoscopy and for me to start on the gluten train. The bloat that happened day 2 was insane and uncomfortable. My lethargy is back. Heartburn hasn't kicked in yet thankfully....stomach issues have just started to get unpredictable again. Hands feel swollen. A couple sores inside mouth. Colonoscopy only showed one tiny polyp and diverticulosis. Still waiting on biopsy. Just wanted to post here as I bide my time....I know if it is "just a sensitivity" I will at least have had all the tests possible at this time to rule out celiac. My 23andme came back increased celiac and my raw data had celiac, crohns, colon cancer all as traits I carry.....so maybe I am being paranoid. I call it being proactive
  22. Millets are now available at the several grocery stores in the city. ... They are also gluten-free, which makes them perfectly safe foods for people suffering from Celiac disease -an illness marked by a severe allergy to wheat that affects ... View the full article
  23. That's not an option here. We're talking about a residential setting, not "eating out." This is the equivalent of home for the students, and they don't have their "own food." I have sympathy for campus food operators who get a steadily increasing number of requests for special diets. But this isn't just a diet fad ("I want paleo...Mediterranean...Martian!"). This is a bona fide medical necessity. That's not to say it's reasonable to expect every medical necessity to be handled by the campus cafeteria, but a GFD is not outlandishly rare or expensive, and reasonable accommodations seem, well, reasonable.
  24. Celiac disease is a derived autoimmune disorder and gluten from grains can cause damage to the digestive system, especially small intestine.View the full article
  25. Gluten is found in items like barley, oats, rye, triticale (a cross between ... For those with conditions like celiac disease —an immune response in the ...View the full article
  26. Having read more articles about the university experience now, I am more aware that many universities have already added separate kitchens and dining rooms on their campuses. This is a move in the right direction and I love the “food court” idea where each separate station only concentrates on preparing one dish (preparing it well and in great quantities) so the gluten-free or the Kosher or Vegan ones are all non-contaminated as best as possible.
  27. I agree that the University needs to be aware of and enforce procedures that are required for students with Celiac Disease or other allergies but to expect them to have a separate kitchen is perhaps a little too demanding I think. My friend owns a catering company and she has color coded separate utensils to avoid confusion but there are still times mistakes are going to happen with she or her staff. Even with a separate kitchen mistakes of cross contamination can happen. It’s a real pain but my suggestion is to bring your own food everywhere in order to be safe when forced to eat out.
  1. Load more activity
  • Create New...