Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by AlwaysLearning

  1. Also, get your thyroid hormone levels checked. Celiac and thyroid disease often go hand in hand. If you have a hyperactive thyroid, it will be difficult to gain weight because all of the systems in your body run too fast. If your B12 deficiency isn't caused by malabsorption due to intestinal damage, hyperthyroidism can cause B12 deficiency because it one of the fuels your thyroid needs to run. But iron anemia can/should improve once the gut heals on a strict gluten-free diet.
  2. I found this old thread because I just had a reaction to Udi's frozen pizza. I've been hard-core gluten free for many years and have been eating Udi's frozen pizzas for the past couple without complaint ... until last night. My stomach is now doing somersaults in ways that I haven't experienced since the early days of my going gluten-free. I figured it was worthwhile to mention the pizza to others to be cautious because the box was plastered with advertising about the "new and improved recipe" and "crispier crust". Udi's seems to be "improving" many of their product lines lately in ways that are making me stop buying their products altogether. In the cases of their bread products, it is the flavor and the texture that became inedible. But last night's pizza was different. It tasted great, but my entire immune system is now on high alert, and nothing in the ingredient list would cause me concern. Of course not every batch of food is the same and not every person's reactions are the same. In my experience, the better you do at eating gluten free and the fewer risks you take, the more sensitive you become to smaller amounts of gluten. There are plenty of people who react to the levels that are considered safe by the parts per million requirements that are currently the standard for gluten-free labeling in the U.S. You're very lucky if you're not one of them. It is sad to see previous posters arguing about who is right, when everyone is just discussing their own experiences ... which can vary widely. And ultimately, the goal for all of us it simply to avoid getting glutened.
  3. Ironically, I didn't have time to track down additional links because I was headed out the door to the dentist. But having a "moderator" treat me with so little respect, I have little interest in continuing. Goodbye celiac forum.
  4. The fluoride content is extremely relevant considering that this is a conversation about why a person might experience a reaction to wine. Here is a link to an entire article that goes into all of the details about the fluoride levels of grapes being beyond those allowed with links to the scientific studies. http://www.naturalnews.com/036753_fluoride_pesticides_grapes.html Here is a link that explains what fluoride toxicity is - from the National Institutes of health. http://www.nlm.nih.gov/medlineplus/ency/article/002650.htm And I personally see this as being considerably relevant to those who have celiac considering the effect that malabsorption has on bones.
  5. On another note, the anti-fluoride folks point out that most grapes are treated with pesticides that are high in fluoride which will persist through the wine-making process. I've had fluoride poisoning and can't tolerate it at all now. There is just way too much of this toxic, carcinogenic substance in everything these days. Organic wines could reduce those risks.
  6. Just an idea, but my health insurance plan does cover appointments with emergency medical practices. The ones in my area are pretty much the same as going to any other regular doctor's appointment, but they have broader hours and will even see you without an appointment. Perhaps they could cover some of your needs for having tests run? I know it would be odd to ask a second doctor to help out when you can't get to your primary, but could that type of thing be a stop-gap measure until you hit your one-year anniversary at this job?
  7. I'd definitely go get my hormone levels checked and get tested for vitamin deficiencies. They are both common in those with celiac and are easy to test for with just a blood draw. Get the actual numbers of the test results so you can do some of your research into the "normal" ranges. Though your doctor may say everything is okay, just being too far in one direction or the other can still cause symptoms even if the health insurance agencies don't want to pay for treatments. (No, I'm not jaded. lol) If those are all fine, I'm not sure what I'd try next, but you are in good company here. Fatigue seems to be the most common complaint of those who have been gluten free for a while but still have lingering symptoms.
  8. So sorry to hear that one night out did so much damage. I didn't like Greens' beer because the alcohol content was too high, but Redbridge wasn't bad for a pale and didn't mind the one Bard's that I tried. I was a Guiness girl before going gluten free so I definitely miss my stouts. When it comes to liquors, you can still enjoy, just have to figure out which types and brands are safe and hope that the establishment isn't putting cheap versions into expensive bottles. I was never a big fan of drinking and now I know why, but there are options out there. Also, if you can find a grocery store that specializes in organic or natural foods, they may also carry gluten-free beers that you can experiment with. And if your stores don't carry the brand's that get good reviews online, they may be able to order them for you by the case. I suppose if you end up not liking them, you could always have others over to help finish them off.
  9. I've been using Country Life Superior B12 tablets for supplementing my B12 and they do get absorbed. You don't have to rely on shots. You just have to make sure you get a sublingual tablet that dissolves in the mouth. Though the dose is huge, not all of it gets absorbed, but enough to have dramatic increases in my test results in just one month, as well as making my painful symptoms disappear. I'm having a more difficult time with my vitamin D and iron supplementing, much slower going. But I'm getting there. I still haven't figured out which one of them gives me kidney pains so I haven't been taking them as often as I should. When it comes to veggies, you may have the power to overcome some memories from the past. I used to despise asparagus, but it turns out that my mother was just overcooking it. I do spears in a pan with some butter, water, and a lid and let them steam for about 4-5 minutes on low heat, then only eat down from the top until I hit any parts that are tougher that I missed cutting off enough of. They are now one of my favorites. Same goes for brocolli and I've even enjoyed a brussel sprout or two if they were young, fresh and prepared right (though I'll still never buy these myself). So that is three of my least favorites that I've learned to live with. There have also been some psychological studies that show that we have a tendency to dislike foods until we have tried them 10 times. I used to dislike both yoghurt and strawberries but after learning this, gave them another try, and then another, and then another and can now enjoy both of them. And I wouldn't overlook texture aversions when it comes to some veggies. Different cooking methods could help overcome that. If you aren't a fan of zuchini now, try slicing them into a pot that has some butter melted in the bottom, slices about 1/4" thick, salt them and stick a lid on it at low heat for about 10 minutes, maybe a little longer. You can see that they are finished when they start to go from white to a more yellow color. The salt makes them release their liquids and they can turn a little mushy, but they end up tasting rather sweet. Otherwise, you could try putting just a little of the veggies that aren't your favorite into stews or soups until you've learned to appreciate the flavors. Or add some items to salads. You could make a game of it and try adding a new vegetable to your repertoire every month, perhaps experimenting with different cooking methods as you go. They won't all be winners, but it could be fun and you could end up discovering that you actually like more than you realized.
  10. Thanks for sharing this. This does remind me that I'm supposed to be starting a food diary so that I can note any additional intolerances or reactions I may have.
  11. I'm not sure if I believe them when they say that the gluten has to be ingested. They claim that the protein is too large to pass through the skin but I read stories here and there about people having to make sure they switch to a gluten-free soaps and shampoos after going gluten free in order to avoid rashes. The medical establishment seems to know so little about gluten reactions that I wouldn't be surprised if they focused only on the damage being done to the small intestines when they say that skin contact wouldn't have any effect. I used to break out in hives on my hands and get rashes on my wrists back when I was still consuming gluten, but only here and there. Of course, I can't remember the meals back then, but I have to wonder if it was from when I ate foods that were picked up rather than eaten with utensils. I can tell you that I don't risk it these days. I definitely react when I breath in dust in the air that contains gluten, which would be a problem if you worked around flour. For me, it just feels as if I have a sinus infection, lots of pressure in the cheeks and forehead and some ear aches, plus a little more phlegm production overall. But I've also never had DH as a symptom.
  12. I'm gaining weight more so than I ever have before, though age isn't on my side on this one either. I think I'm up by about nine pounds in the past nine months. I know that plenty of my issue is that I've been eating too much and not the right things, especially in the first six months when I went through the phases of buying all of the gluten-free products so that I didn't feel deprived, then cooked lots of really rich foods in my own kitchen ... so that I didn't feel deprived. I'm back to a more normal routine for me, but I still have a penchant for the high-calorie foods so I'm trying to curb that. At first, I also seemed to crave food all of the time. I don't think this was emotional. I got tested for vitamin deficiencies and had some which may have been why my brain was telling me to eat more. Getting those straightened out does seem to be helping. But I've told myself that I'm not going to worry about my waistline until I get my vitamin D levels up again. Vitamin D is more like a hormone and deficiencies are linked to weight gain. I'd also be wary of the gluten-free equivalents of many gluten-free foods because they are higher in calories (and often lower in fiber). I'm also trying to up my exercise a bit in frequency, just adding a few more 30-45 minutes walks into my week. I know that it will be more difficult to lose weight now that my body isn't dropping weight without even trying, but I'm trying to stay focused on my health rather than worrying about my size for now.
  13. Another thought, I wouldn't underestimate just how far you have to go in order to actually be gluten free or the emotional strain getting a diagnosis has dumped on you, first not knowing what was causing problems, and now, starting to discover how much your life is going have to be modified going forward. Just the amount of learning that needs to be done in the first few weeks is pretty huge. But it does get easier once you've figured things out. I had a friend who thought he was doing okay at being gluten free for years. In hindsight now that I know that I have a gluten problem too and have more knowledge, I realize that he wasn't gluten free at all, and probably still isn't. I'd watch him eat the hotdog out of the bun at ball games, and he didn't realize that all vodka wasn't made from potatoes! He still eats out regularly, and I know I've been glutened from the same meal that he ordered when he doesn't notice it. When I see him online in the middle of the night, unable to sleep, I have to wonder if he glutened himself again. If you put in the time and effort up front to get really informed about cross contamination and hidden sources of gluten, you could save yourself a lot of hassle down the road and get back to the healthy form you desire. There is the newbie thread here on this forum, and I'd research hidden sources of gluten so that you don't get whalloped with them accidentally. Seek out the natural and organic grocery stores for more gluten-free options than what you can find in regular stores (they may even be able to order gluten-free beers for you). Every accidental glutening often comes with days of recovery, so the better you are at avoiding them, the sooner you'll get back to top physical form. And feel free to keep updating those profile pics with the topless shots. We women will appreciate it.
  14. You seem to already be doing the right things, looking into hormone imbalances and vitamin deficiencies, though getting the actual numbers from your tests so that you can do your own research may be a good next step. Often the "normal" ranges are too wide, and many can still have symptoms when they are near the edges, though many doctors won't consider this for some unknown reason. I don't get fatigue per se, but I do sometimes get what appears to be something like reactive hyperglycemia which got better for a while, but seems to still arise here and there. My cold feet went away completely when I went gluten free nine months ago but have returned in the past couple weeks, back to throwing a heating pad into my bed so that I can get to sleep at night. I don't yet know if I'll have to wipe out all of the products that are being sold as being gluten free in order to eliminate the parts per million. I do have low vitamin D and iron levels that I'm working on. I'm hoping that the vitamin D will help keep me from feeling tired after eating, and that iron helps with the cold feet, but I really don't know yet. Getting my B12 up seemed to help with some other symptoms though I also throw in a multivitamin about once a week just to be on the safe side for everything else. But I think it is time for me to start keeping a food diary, and seriously. I've been avoiding some of my old favorite foods like my smoothies because I'm reacting to something in them, but haven't figured out what. So it may be time to start playing around with some modified versions to narrow things down. At first, I didn't think that dairy was a problem for me, but now I'm not so sure. I know, not specifically an answer to your question, but sometimes it helps to see what others are considering trying. On another note entirely, I was doing some research into the causes of celiac and came across some scientific studies that found the molecule, interleukin 15, which actually tells the body to overproduce T cells. Interleukin 15 also has some connections to the Epstein Barr Virus which can cause Chronic Fatigue Syndrome. Once you've had mono (and most of us have, even if you don't remember it), the virus is with you for life so there may not be a solution, but perhaps looking into it could give you some other ideas for how to overcome your fatigue? Mono is also one of the illnesses that some people suspect as a trigger for "turning on" their celiac genes.
  15. Congratulations on getting a diagnosis. I say that because I so wish I had figured this whole thing out 20 years sooner. I had plenty of weight loss issues, but they did improve when I wasn't eating gluten. It sounds as if you have a great motivator for staying gluten free so I'd also see this as a positive. I'd get tested for vitamin deficiencies due to the obvious malabsorption issues as some can't be fixed with just a multivitamins or by eating the proper foods because of damage that is still in the process of healing. Otherwise, I would probably consider modifying your work-out routine for these first few months so that you're not overtaxing your body as it is trying to heal, then slowly work back up to the higher levels again. And already finding and using this forum is huge. I still learn things all of the time. You'll probably have all sorts of accidental glutenings in the beginning, but it does get a lot easier, especially if you take advantage of sources like this for less-well-known information. And for phase two of your gluten-free life, I'd plan to get into the kitchen and cook more foods from scratch rather than relying on foods sold as gluten-free. They are really good at helping you to feel as if you're not deprived of anything in the beginning, but like any pre-made or processed foods, they generally aren't the best thing that you can be eating. Speaking from experience, I can tell you that making a huge batch of potato salad with eggs, black olives, and spices, is a great way to tack on a pound or two.
  16. My pain in this area appears to have been caused by the B12 deficiency that came from malabsorption. It persisted after going gluten free, but has improved since getting my vitamin levels tested and supplementing. I'm two months pain free after six years of recurrent issues so I'm hoping this was the answer. But if you do get tested for deficiencies and they exist, don't just treat them and move on because you fear having to give up wheat. Look for the cause of the deficiencies so that you don't end up with even more problems.
  17. Yes. Most people mention that they can't go into bakeries that make gluten products because of the dust in the air, and I've walked out of a restaurant where I was seated too close to their prep area for making pizza. I have been glutened from cleaning an area where wheat-based kitty litter had previously been used, though without gastro symptoms, just sinuses and all of the anger/headache/brain fog after.
  18. Congratulations on getting a diagnosis and starting down the right path. That first month is sure to be full of accidental glutenings so I wouldn't beat myself up too badly about it. Gluten is hidden in so many foods (and kitchen utensils) that it can be tough to get rid of hidden sources right away. Just keep at it. In three or four months, the accidental glutenings should be few and far between. You'll become a pro at reading labels and knowing what to look for and you'll get the kitchen items figured out. When it comes to pans, I'd get rid of any that have non-stick coating and I'd be wary of pans made of softer metals that have deep pitting. Track down information about how to cleanse and recondition the cast iron. But the rest that are made of smooth metal - they can be cleaned. That said, if you're still sharing a kitchen with others who aren't gluten free, I'd consider rewashing even those before you use them to make your own food, every time. Wooden spoons, cutting boards, even plastic spatulas (anything porous) would be suspect.
  19. My sinuses like to participate in my glutening parties, even playing host if the source was from air-born particles.
  20. This was years ago, but the only thing off during the testing at a yearly physical was extremely low cholesterol levels. Despite that my doctor asked me if I was a vegetarian and my answer was no, and that I had never been, his treatment recommendation was "Eat more steak." and he sent me on my way. For years I complained that I had abdominal pain. I can't tell you how many times I've been tested for the same three STDs without the doctors telling me that they are going to run the tests, if I've been tested before, or if I've done anything to acquire an STD. Most of the time, I find out that they've run the test when I get the bill for the lab work! Of course, that is better than the doctor who insisted that I must have been raped. I have dozens more, but they are all pretty depressing and I don't want to revisit them. I have yet to find a doctor that I respect.
  21. I can say that all of my stool issues went away within two days of going gluten free though abdominal pain seems to be related to additional vitamin deficiencies that I'm still working on. This is the first time I'm hearing the phrase "end stage" in relation to celiac. And as far as I know now, even those with celiac sprue can heal if they manage to figure out additional food intolerances (dairy being a common one) or imbalances and go hard-core on avoiding gluten - no parts per million. It sounds as if you are already planning on taking the right steps needed to monitor healing in the future, an endoscopy now that can be used for comparison should the vilii be damaged. But the fact that you already notice a problem with dairy but are still consuming it may mean that you could use some additional motivation in order to pass on it in the future. If you haven't started a food diary yet, that could help you pinpoint your specific issues. I'm presuming that you're still eating gluten now, but even if your endoscopy didn't show any damage, I'd still consider giving gluten-free a try as you could have the sensitivity. They are still learning a lot about gluten reactions so better to find out if your body does better without it than waiting for the science to catch up.
  22. First, I just wanted to say that I'm soooooo sorry to hear that you have had to go through all of this. For years I had abdominal pain above and to either side of my belly button, my one symptom that persisted even after I went gluten free. Mine appears to have been caused by a B12 deficiency (easy to test for, easy to treat) and has gotten much better with supplements. Any levels below 400-500 can have symptoms despite that still being in the accepted normal range in the U.S. When I was doing research into my pain, there were about 9-10 serious health issues that people had in relation to pain in this area. That list included things like Crohn's disease, diverticulitis, gallbladder disease, pancreatitis, appendicitis, hernias, ovarian cysts, vein issues, endometriosis, and more that I can't remember now, though none of them mentioned stomach polyps. The bad news is that there are literally hundreds of people posting online about pain in this area who still have no idea what is causing it despite lots of testing, and even some unnecessary surgeries to remove things that aren't diseased. Though it sounds as if you've already had a lot of testing done, getting a couple more blood tests to rule out a few more possible causes certainly can't hurt. Best of luck in finding some answers.
  23. Someone here had the idea of combining keeping a food diary with foods changing every four days to try to narrow in on possible culprits. I love that. Much better than eliminating everything and ending up eating too much of the same thing. The four day cycle could help you get more variety back into her diet and split up some of the things she is currently eating into different day groupings to help eliminate them as culprits. Just throwing out ideas to consider: It sounds as if she's had full-on celiac for all of her life. Has she been tested for vitamin deficiencies? They have some pretty crazy symptoms. And has she taken any medication or supplements lately that could have thrown her intestinal bacteria or system out of balance? Bacterial overgrowth does come with diarrhea as a symptom, but that should have been one of the first things they tested for, along with parasites.
  24. Vitamin deficiencies are common for those who have been malabsorbing and can cause all sorts of symptoms all on their own. I'd get those tested. Otherwise, a food diary could help you figure out if you have any additional food sensitivities. Most doctors seem to know a lot less than the people here who have lived it, so you're in the right place. Knowing how long you've been gluten free, if you've already had an endoscopy, and how well you're doing at avoiding accidental glutenings would probably help others give better advice, but what you're mentioning seems to be pretty common here.
  25. In addition to any gluten testing, I'd definitely get my vitamin levels checked if you haven't already. B12 deficiency can cause severe abdominal pain which can come and go and is common amongst those who don't eat animal products. Then keep getting all of the vitamins checked for the rest of your life so that you know how much you need to supplement. Vegetarian and possibly malabsorbing due to gluten would be a double whammy for vitamin deficiencies. Best of luck getting things figured out.
  • Create New...