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Showing content with the highest reputation on 02/07/2017 in all areas

  1. 1 point
    Inspired by Gary Taubes (Good Calories Bad Calories; Why We Get Fat; and The Case Against Sugar; his numerous podcast and online videos, op eds in the NYT, etc), as well as nonstop reading on the endocrine system and a series I first saw advertised on this site, called "Betrayal" about autoimmunity, I have been sugar-free going on five days now (really six, since I fasted on Saturday, but I don't really count that). What does that mean? It means things like, no chai latte, basically no milk, nothing I would eat for that "sweet taste" including yogurt, no jelly/jam, not even any potato chops or salsa chips, I've had a total of about 1.5 GF biscuits. What it has amounted to is practically no snacking between meals. I have carried walnut pieces mixed in with sugar-free carob nibs to work and that's been my only between meal snack. What it further has amounted to is cutting down on the CRAVINGS and this is huge. It's amazing how sugar drives the hunger for EVERYTHING ELSE IN THE WORLD, of course including sugar, but just everything else, until our minds can think of nothing but meals/snacks/flavors/cravings - we are driven driven driven for that ultimate...whatever. Nonstop thinking/talking/whining/reading about food. Is it dull? Well, yeah, a little bit I must say. The experiment technically ends on Sunday morning. If I feel by then that it has really helped (with a modicum of weight loss, and that's what it's been for me so far and I expect it to continue, slow and steadily; less bloating - this is the HUGE thing), then I will once again give up sugar for Lent. Anyway, just thought I'd share. Plumbago
  2. 1 point
    Before I found out I was celiac, I was sent to many different doctors and went through a barrage of tests for allergies, spinal issues, brain issues, thyroid menieres, etc. Everything came back normal and no one could tell me what was going on except the occasional scare from a doctor guessing it might be this or that. I went to e.r several times for severe dizziness, shaking, chills, blurred vision, tinnitus, joint swelling and heart palpitations. I was told I was having anxiety and sent home. I rooted top explain that the anxiety was occurring due to these other symptoms but no one listened. 5 years ago by simple luck I was diagnosed by a gastroenterologist with celiac. Finally. The gluten free diet made a huge difference. I can tell immediately if I am poisoned because the first symptom is dizziness. When I told a doctor that he told me I was crazy because that's not a textbook symptom of celiac. But it clearly is. In a glutened state, the body reacts in many ways. This is a type of allergic reaction and because your bodies defenses are down in regard to that it can cause any number of symptoms and some severe problems if left untreated. Celiac is also an autoimmune disorder. Autoimmune disorders affect the entire body and one can be linked to or cause another. So celiac, thyroid problems, arthritis, lupus, ms, diabetes, and such are commonly linked together. These are definitely systemic diseases. This group is a wonderful way too confirm that we are not crazy or imagining things and we certainly are not alone.
  3. 1 point
    Hi Celina, It took my family ten years to take it seriously and it is because I did. I realised that I could say I only eat food I prepare myself. When I knew my mum took it seriously I would eat food she cooked for me. I could have offended her recently when she made me a cup of tea but took out the tea bag after eating a sandwich, but she and I have a closer relationship because I am honest with her. I said I was really sorry but I can't accept tea from anyone who doesn't wash their hands first after eating gluten food. I said I don't even accept a cup of tea from my husband without him washing his hands first. I had realised that I had started to eat food people prepared me, just to please them. I'd then go home and suffer for four or five days unbearably. My mum began to realise that if I was going to eat her food she would have to take it seriously, because I explained to her what I considered 'safe'. She made me a big chocolate cake for my birthday once and assured me that before making it, she and Dad had cleaned the kitchen and checked every utensil over before baking. They were laughing about how careful they had been and I believed them because they were finally taking me seriously. They even remove the toaster from the kitchen now when I go and visit because I plucked up the courage to tell them I react to airborne cooking or baking smells. You feel like a hypochondriac when you know you are not, especially without a clinical diagnosis. You don't need one to know what your symptoms are and what you need to avoid. I used to get migraine and other symptoms whenever I visited and still struggle to say that I need to avoid being in the kitchen. The thing about parents is that they feel guilt. They want to carry on looking after you and being hospitable even when you grow up and have kids of your own. They want you to trust them too. The cake my mum and dad made that day was delicious. I went home with migraine and hid my head under a pillow in a darkened room and said nothing. My mum called later to see how I was and my husband told her I was lying in a dark room with migraine and asked why she was asking. She said that after all the effort they went to she realised she had used baking powder with wheat flour in it. I was so excited, because I knew it was not cross-contamination and it was like a placebo effect experiment because my mum and I both knew I believed it was gluten free. From that day, even though she believed me before, this was like a breakthrough for me and I was happy with my symptoms and told my mum I was so happy to know I hadn't imagined it, knowing that she believed me. If your mum is no experiencing your symptoms, she is not going to be as careful as you. When you work out how to look after yourself, you can tell other people how to. Only you know how bad you feel when you're not careful. I always take a mug and teabag to friends' now and they don't bat an eyelid and I can relax knowing the tea is 'safe'.
  4. 1 point
    That is the point, Gemini. You do not do well without grains, but some people are reacting to lots of foods, without knowing what to. Some people need to cut out food groups in order to heal and then bring them back one at a time. Without elimination we don't know what we are reacting to. Some people are suffering and confused because something is causing them symptoms in addition to gluten, probably because their guts need to heal by eating only easily absorbed and digested foods. If that means cutting out all grains for a month it is worth it. Nuts are a great source of energy and so are bananas and other fruits and veg.
  5. 1 point
    Hello - It's been a very long time since I have posted here. I have a 12 year old boy who was diagnosed with celiac when he was 3 1/2 years old. Everything has been going well for him health wise for many years. Only a handful of times has he been sick from being glutened - which we consider a blessing! He is an active kid, plays a sport every afternoon, has a rigorous school workload, and participates in other activities such as piano and skiing on the weekends. We noticed over the past month or so that he seemed sluggish on the basketball court, saying he didn't feel well but couldn't pinpoint why, claiming he wasn't hungry when we sat down for a meal, acting exhausted when he didn't have a real reason to be tired, and has twice vomited but from nothing we could identify. Just a week or two ago my husband and I really tried to brainstorm what was happening, and he mentioned that he had been eating a lot of cheerios. In the past year I rarely bought them, but in the past few months I have been buying the regularly. He had been eating them approx 4 times a week just this past month! I started looking online and saw conflicting accounts of people's experience with Cheerios. Needless to say - we stopped allowing him to eat them. Lo and behold, he is a changed boy. He has energy, full appetite, no signs of sickness and says he actually feels better! I don't know if it is because he was eating them often, or if any exposure to them would have the same effect. He is a kid that doesn't complain about anything, and will keep it to himself if he doesn't feel well. I truly believe he knew he didn't feel well, but because he couldn't pinpoint where or why, he couldn't tell me. Just wanted to share our experience, in case any parents or others with celiac are eating cheerios assuming they are safe!
  6. 1 point
    I tried reading the original Wheat Belly but couldn't get through the book as it had too much incorrect and yes, fear mongering, information. The actual science of Celiac Disease is very well understood today and the original book was just nonsense in many parts. You can call anything science today without actual proof of anything and people will believe it. I am in the science field, but not medical science, and I see it happen all the time. If people want to go grain free, I have no problem with that. But to take the leap and say that all grains are damaging to everyone today is just not true and is pseudo-science. As far as grains being different today, yes they probably are. That stands to reason but wheat is wheat is wheat. If you have Celiac then or now, you can't eat the stuff. We had this same "discussion" a while back about eating wheat in Italy. Some people have said that they don't react to the wheat in Italy because, they think, it is less processed than American wheat and contains less gluten. I can say from 12 years experience as a very sensitive Celiac, whether you feel the reaction or not, if you eat the wheat in Italy, you have just inflicted damage on your gut. What I have noticed over time from my perspective, is that once you really heal well, reactions change. My reactions are now less severe and they should be, because my gut has healed well and it isn't a total wasteland anymore. But I am sure if I continued to cheat, over time, I would right back to square one and my reactions would revert back to horrible and debilitating. I think everyone needs to make their own decisions about what they eat but no Celiac should ever be told that they should ditch all grains because they are being damaged by them. Ditto for non-Celiac's. If you have a reaction that can be traced back to a particular grain, every time you eat it, then common sense should prevail and you drop that grain from your diet. You may trial it again down the road when you heal. I do not do well without grains. I exercise hard to combat osteoporosis and without grains, I run out of steam. They are an important part of many athletes diet. That does not imply I am in any way an athlete because I am not. But my first cousin is a triathlete who does Iron Man competitions and grains are an important part of her training diet. I think it is a very individualistic decision. One mans pleasure is another's poison. I just don't think we need to cut any more food groups out of our diets without knowing for sure whether they are actually a problem.
  7. 1 point
    Hi, You might be allergic to soy. I had awful fatigue in the morning about 2 hours after I got up. I was so tired every morning I couldn't function and had to lie down for an hour. I literally thought that I had some horrid disease. One morning as I was lay on the couch the View was on and Elizabeth (who has celiacs) said that most people with celiacs are allergic to soy. Well I got up and checked the ingredients in everything I'd ate that morning and bingo, there is was...soy in my gluten free vitamins! I stopped taking them and am fine, although I accidentally get soyed from time to time at least I know what it happening to me. Check for soy..it's everywhere. Hope this helps you out!
  8. 1 point
    Gemini, you certainly WERE on a roll. Firstly, the book was not the original Wheat Belly, BUT Wheat Belly Total Health as I stated. I'm not sure if you actually read either book, but the physiological/metabolical pathways are described fully in the Total Health book. It's not made up or fear mongering. It's science. I'm a nurse and it has been fascinating to find out these things. And in case you want to say how our ancestors have been eating these things since Biblical days... it's not the same grains that are talked of in the Bible. Those no longer exist. JM34- I get confused by your posts. Have you ever gone fully gluten free for 6 months? In spots you say you do, but when your Mother or Doctor says to eat gluten, you do. As has been mentioned before, whole foods would be your safest route. NOTHING out of a box or can... just fresh/frozen veggies/fruits and meat. There are many foods that can cause reaction and until you FULLY eliminate for 28 days, you can't know which things are bothering you. I understand we are losing something in translation, but you NEED to stick to the basics for more than a day or 2. Sometimes the reaction to a food can be delayed for 2-3 days. In some cases people react to pesticides or herbicides in food. You could also be reacting to what the animals were fed. You could be reacting to the mold spores on the grains. Anything stored in bins can be contaminated. Your case is not typical, and it will take some hard work on YOUR part. You've gotten some good options here, but I don't see that you have fully committed to ANYTHING. You seem to try something for a couple of meals and when it seems to fail... you drink COKE! THAT certainly has no magical healing powers. They do use it successfully to remove corosion from batteries, so that tells you what it can do to your stomach. It would be great if just removing gluten would end your problems, as it seemed to for Gemini. That didn't work for you and it didn't work for me or my husband. When these feeble attempts fail, your anxiety gets worse. It is a self-perpetuating cycle of illness... UNLESS you stop all of it and get to basics for 28 full days. No home remedies, no COKE, no eating a bit of wheat to "feel better". As one person said, I'd like to bring you to my house for a month. You would certainly have a better handle on what you do and don't tolerate. Just because tomatoes are listed as healthy, doesn't mean YOU can tolerate them or any food. If you have high heavy metal levels, you will react differently to things. Doctors only find what they are testing for. That's how testing is done. If you aren't looking for HIV, it won't jump out on a standard blood test. Until YOU commit to eating consistently, you will continue this cycle of unwellness, I fear. I can't imagine being so young and so ill. I pray you find the strength to commit to sticking with a plan. Best of Luck! Debbie
  9. 1 point
    Even if you do not have autoimmune thyroiditis (high antibodies), your doctor should probably continue to treat your thyroid with hormone replacement. Why suffer? A small dose migh help you feel better while you are healing. Retest the thyroid in six weeks to see if it is helping (or to measure if your thyroid is getting worse. Treating your celiac disease might very well even out your thyroid. The purple hands might be Raynauld's, another bothersome AI issue. My kid has it. We have invested in wool socks (we live in Southern California). No meal plans. Just eat foods you like and are varied. I use my crockpot a lot. I cook in big batches and freeze meals. When you feel yucky, it is hard to cook. It will get easier!
  10. 1 point
    JM34, Are you taking Niacin? You seem to have had diarrhea for quite a while now. You mentioned your acne came back. You say you get irritated easily. These are symptoms of Pellagra....diarrhea, dermatitis, and dementia. https://www.ncbi.nlm.nih.gov/pubmed/2084620 This is an article about irritated esophagus in people with Pellagra. They responded to treatment with niacin within a week! Niacin is a water soluble B vitamin. It is lost quickly when one has diarrhea. Dementia starts out with irritability and anxiety. Perhaps you could discuss pellagra with your doctor. It should be considered in cases of malabsorption, but is often underdiagnosed. You might want to reconsider eating corn. Corn has proteins in it that can trigger a reaction in some people. Here's a study on that. https://www.ncbi.nlm.nih.gov/pubmed/22298027 Try Organic Basmati rice. What is your Betaine HCL made from? Some comes from beets or spinach, but some comes from wheat.
  11. 1 point
    I'm glad you posted this. It's good to read accounts of others taking charge of their diet and it's a bit of an inspiration too. I gave / vastly reduced sugar in my diet maybe 10 years ago, before I learned of my gluten problem. I'd read a book called potatoes not Prozac and followed the diet plan there. It was a revelation, I had more energy, the cravings did diminish and as long as I had enough protein I wasn't hungry between meals etc. It helped with my mood, but it wasn't until I removed gluten that I saw a serious change there. Now I eat way too much sugar again. The gluten free snacks are my reward for the price of the Diet... I get proper cravings, think it's even possibly wrapped up with gluten intolerance just as alcohol may be. There's some interesting things out there about that. Anyway, whatever the truth of it I know I'm going to have to get much tougher as I don't feel great. So I may be following your lead in a little while. I am hopeful I can feel better than I do now. Good luck and please tell us the verdict on Sunday.
  12. 1 point
    My DD at 6 yo was having severe ataxia symptoms with gluten exposure - falling for "no reason", speech problems - both stuttering, forgetting words, losing track of what she was saying. After a severe episode that progressed in horrible ways last year, we tried to do more investigation with some terrific results. As hard as it is to find a doctor with gluten ataxia knowledge, the pediatric healthcare is even worse - her physical/occupation therapists and pediatricians just have no knowledge (other than what I have shared with them). I try to bring them the adult information in hopes that they will be able to apply it to their pediatric patients, but they have a hard time wrapping their heads around it being a possible pediatric issue. So, while our DD's serum B12 levels always looked fantastic, we used another test that helped demonstrate that she was not uptaking her B12 - it was all getting dumped. We were able to identify an intestinal infection that had left her gut unable to absorb well, and we opted to treat that infection. We also started supplementing her B12 sublingually. We also got her into physical and occupational therapy so that they could help her learn tools to overcome the struggles that she has due to incidental and environmental gluten exposures. We also got more proactive about further reducing her environmental exposures. Finding healthcare providers that understood how to evaluate her made a tremendous difference in our progress. While she maintains a very conservative gluten free diet, we have seen tremendous improvement for her with far fewer episodes (none of the falling - thank goodness, as that can be such a big problem! and far fewer speech difficulties *KOW*) with her treatment plan that targeted her complications. So, I think my DD has ataxia, and I think that nutritional complications (deficiencies created by not uptaking properly, as she was getting plenty in her diet) can severely complicate the ataxia problems. Her symptoms now are much improved. She continues to maintain a conservative gluten free diet, but she has been able to relax a bit now that she is doing so much better. I attribute her improvements to our healthcare team that better understood how to evaluate her biological function with the symptoms that I described, as they were able to identify, treat, and advise on some issues that were complicating her healing progress.