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      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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  1. 3 points
    jherm........welcome to the forum! I can offer up some advice on a number of issues you have as I had/have the same problems. I have Celiac, Hashi's thyroid disease, Reynaud's and Sjogren's Syndrome. Yes, I did lose the genetic lottery, didn't I? I have been diagnosed and strictly gluten-free for 12 years this April. As stated by cyclinglady, time will heal things but you must realize that by time we mean anywhere from 1-3 years. I will add that the longer I am gluten-free, as each year passes, I improve and now I feel as normal as anyone else out there without all my problems. I am also disgustingly optimistic...which really does help. Humor is another favorite of mine. The dizziness was a HUGE problem for me and that can come from a number of different causes. I mean, room upending, gotta sit on the floor kind of dizzy. I was severely anemic at time of diagnosis and for a long time before that. I am sure that contributed to the problem but gluten can have neurological effects on the body so that's another thing that will take time to heal. Blood sugar issues....ditto. I had a couple of major episodes with reactions (I am not diabetic) where I passed out but it all was due to undiagnosed Celiac and every one of those things disappeared, over time, after going gluten free. Please do not get really worried about it because these are common symptoms for many of us. When you are not absorbing your food properly, it wreaks havoc with blood sugar. My advice would be to eat frequent small meals with protein at every one. Get your good fats in there also but small amounts, as fat is the hardest food to digest. Eat fruits and veggies freely, as long as they don't bother you. Invest in digestive enzymes for awhile as they will help you to break down your food. Your body is not doing that properly right now. Take one with every big meal you eat, in the beginning. Make sure they are gluten-free. I used Digest Gold from Enzymedica but they are pricey so any good enzyme that is gluten-free will do fine. This is important advice I give to everyone. Your doctor needs to keep treating your thyroid, while keeping track of levels much more frequently as you heal. Your TSH is VERY high. Anything over 2.5 is treatable thyroid disease. These new ranges are not observed by all physicians. They also need to check your actual hormone levels which are Free T3 and T4....the total number. Press for them to do so. Checking only the TSH is half ass medicine. She may be correct in that your thyroid will normalize, over time, but mine didn't. I went too long with undiagnosed Celiac and now I have a half ass thyroid. Mine was also autoimmune, though. Your thyroid controls metabolism so if she does not treat it while you heal, it will slow everything down.....including your healing. Reynaud's Disease........pain in the ass but it can be improved. One of the biggest differences in my symptoms occurred with healing. Over time....sorry if I keep on about that........things got better. The blanching of my fingers and toes got less and less with time on the gluten-free diet. You are calming your overactive immune system down so the attacks should get less frequent and milder. After 4 years on the diet, I was energetic enough to start a rigorous exercise program. Had to because I also have osteoporosis in my spine. Yeah, I know, I look bad on paper but if you met me, you would be surprised that I don't look like I'm falling apart. Turns out, it was the best thing I ever did. Exercise REALLY helped the Reynaud's symptoms. Get all that blood pumping and amazing things happen. Exercise is one the single best things anyone with autoimmune problems can do. I was too weak for the first 4 years on the diet to do much of anything but walk or hike but I do half an hour of weight training and half an hour of cardio twice a week and it has helped me build muscle I never had, improved my balance, greatly improved my mental well being...and the list goes on and on. When you feel better and get some energy back, think about making it a way of life and you will not regret it. I still have some symptoms with Reynaud's but much milder and not as frequent as before diagnosis, which is amazing considering I live in New England and it's cold here right now. I actually love snow and cold and was not going to let Reynaud's prevent me from playing in the snow. The exercise has also helped my osteo. I have not lost any height, which amazes the docs because usually, those with it in their spine lose height as they age. I will be 58 years old in June and I consider it a success! Compression stockings are great if you have circulatory issues. I do because I am very small and have Reynaud's. I wear them from time to time but it really doesn't do wonders for the symptoms of Reynaud's. The exercise did and keeping fingers and toes warm. What cyclinglady said about those stupid gadgets doctors all use now because, really, you will die if they don't know your oxygen levels these days.......she says with sarcasm........she's right! They rarely work on me because of the Reynaud's. So, don't think you are dying or anything because pulse or oxygen doesn't register correctly. I give them one chance to do so and if it doesn't work then I tell them we are done. Not many people really understand this stuff. It gets annoying. I hope this has helped and know that you are not alone. It will get better, I promise. Just make sure that everything you put in your mouth is really gluten free and be patient. You may still have D because you are making small mistakes that we all make in the beginning or you are eating too much fiber and it is hard on your gut. I would suggest taking a good probiotic to help populate your gut with good bacteria. There may not be any and that isn't helping the D. Bananas are good for binding. Cheese is also but you are cutting out dairy for now. I get that. I have to eat dairy lite because large doses still kill me after all these years. But I can tolerate small amounts of good cheese, thank God! If you have any more questions, we are here to help!
  2. 3 points
    Welcome to the forums, this is a great group for support. I have multiple issues (check profile) related to Celiac disease myself. It have been a great experience here over the years. And I often find myself helping others or coming out about my issues here. Feels like a nice understanding family most the time. I also post often on recipes, suggestions on supplements, and help finding foods for people and cooking instructions. Feel free to talk about your issues and ask questions, many of us are have years of experiences dealing with the disease.
  3. 3 points
    Funnily enough my eye twitch, a muscle just below my right eye started again yesterday which along with some other stuff is making me think I've slipped up somewere on the diet. Anyway, lot's of good advice above. One suggestion. Try writing down in advance of your doctor's visit exactly what you're experiencing and what you want - exclusion of celiac. Do it in bullet form, don't put too much detail, just make a small number of well worded and powerful points, reviewing what's happened so far. eg: Diagnosed with hypothyroidism Anxiety Muscle twitching Stomach problems Family history Positive reaction to gluten diet Apparent lack of any gluten testing so far Then have one sentence which expresses what YOU want from the visit: In view of the above points I would like celiac testing to confirm or exclude the reaction to gluten. I understand I will need to eat gluten for accurate results and I've already resumed eating it. and don't allow yourself to be fobbed off with the doctor citing anxiety as a catch all for everything you've experienced. It's a very simple blood test, doesn't cost as much as the MRI. Be calm but assertive, it's your health and you know more about your own body than anyone. If they refuse get another doctor because as Cyclinglady says, it sounds like you may be on the right track. One final point, if once all testing is complete the results are negative, please DO NOT assume that gluten isn't a problem for you. A lot of my neuro symptoms are similar to yours and I tested negative and had negative biopsy too. The good news is that the gluten-free diet resolved a whole load of things, some of which I'd not even realised were symptoms. Best of luck!
  4. 3 points
    And I agree with Karen. You're a troll. I am un-watching this thread. To my fellow celiacs and NCGS on this board: This is only my opinion but continuing to answer or reply to this person will only exacerbate his/her continued arguments. This person wants to cause disruption. I will not be a party to it & I advise none of the rest of you to either.
  5. 3 points
    I haven't been able to get a straight answer about his dad. so what if he eats glutened and has no issues? He hasn't been diagnosed with Celiac from what I can gather from all these posts. So I don't think that's a real good reason for others to follow this's guys belief system or " theories" of Celiac disease. We have given him our opinions and links to reliable info about Celiac disease on 2 recent threads and in his previous incarnation as Astrongtower. He can read and decide what he wants to " believe". I doubt anything else we say will change his mind.
  6. 3 points
    As someone who tested negative for celiac but reacts to microscopic quantities of gluten I would never knowingly ingest any gluten but you're by no means the only person who feels this way. I know a diagnosed celiac for example who drinks lager because 'my stomach has healed now'. If you're celiac of course then the science is very much against you and him as others have said above. You're free to ignore it but do expect to be challenged on those views here because there are people with greater knowledge and experience and false statements should be challenged before they cause harm to others. Nothing personal in it and ultimately you remain free to make your own informed decisions on your health If you're going to adopt a mix and match approach to the gluten free diet however it's very important that you never self categorise yourself as celiac or I would argue as gluten intolerant / sensitive. When people see individuals such as yourself saying 'I'm normally gluten free but as it's a special occasion / such a great pizza / just a small slice / second tuesday in a month etc. I'll make an exception' they may draw erroneous conclusions about the medical importance of excluding gluten for others. That's very damaging to the reputation of those following the diet strictly and potentially may cause restaurant staff to fail to treat others requests seriously. So I'd argue you have a responsibility to make your own particular status and approach clear and differentiate yourself from those that have to follow the diet strictly. If on the other hand you're actually celiac and just one of those people that slip through the diagnostic net then you should be aware that you're potentially taking a risk and going against the scientific consensus. Best of luck with your ongoing diagnostic adventure!
  7. 2 points
    Hi TS Welcome to the forum. I am not perhaps the best qualified to answer all your questions, but I just wanted to say that as a person who suffered from debilitating anxiety very badly prior to my diagnosis, and has had the odd setback with it since going gluten free, there is nonetheless lots of room for hope. Please remember that, just because you feel this way today and have done for a long time does not mean you are going to always feel this way. I have read your post and unless I have missed something, I cannot see you mentioning that you have had your vitamin B12 levels tested. I cannot tell you how important it is to have this level checked - B12 has a huge role in mental health. If you find your levels are low or even low normal you need to speak to a doctor about getting this put right. Sometimes supplements are enough but some folk need injections, at least initially. On a similar tack - how is your blood iron (ferretin).? If you are a celiac your iron levels might be low and again there is quite a bit of research to show that this could cause depression. This needs to be tested as you shouldn't supplement unless you need to - too much iron causes problems of its own. Before I close, I would like to recommend a couple of books that might help you. The first is 'At last a life' by Paul David. David had anxiety very badly for many years so has been there, bought the T-shirt. And recovered. As for myself, I didn't even know I had anxiety when it struck - I felt so wretched and ill, and I was just googling in my symptoms, and then I found his website. It was if he was writing about me. It has been a lifeline to me and I still refer to it if I have the occasional setback. http://anxietynomore.co.uk/ Secondly - a book on depression. https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814 The author discusses why following the six steps combat depression. The six steps are introducing physical exercise; eating more omega-3 fatty acids; natural sunlight exposure; restorative sleep; social connectedness; meaningful, engaging activity. I have bought it for friends and two (one of whom is a GP) thought it was absolutely brilliant and very helpful. I hope others will chime in and help but I can tell you a lot of us have experienced anxiety, you are not alone.
  8. 2 points
    Most major chain grocery stores also have a gluten free product list that is available, you can look up this way to get a idea, if in doubt of anything you can always call the company or email them and ask. I have used Ore-ida hash browns when cooking breakfast for others all the time. I normally make my own fries in the oven with sweet potatoes my own seasoning blends. Frozen ones used to be nasty to me so I would never serve them to others. BTW nice list here of some other gluten-free products, https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ I know Ian's and Udi's makes nuggets, fish sticks, cheese sticks, onion rings etc and are available in Canada. PS if you need your to know how to make them in the oven real quick Sweet Potato Fries 1 Sweet Potato 2 tbsp Oil of choice Olive, Coconut both work fine for this Seasonings 1. Preheat oven to 425F 2. Cut off the ends of your potato then cut it in half, so each half should be about 3-4" long (you can season and use the ends separate if you wish) 3. Cut your potato into fries desired thickness (I normally cut them over 1/4" thick but not quite 1/2") 4. Put them in a bowl, top with the oil and sprinkle your seasoning over the top of them and toss them around in the mixture coating evenly 5. Place on parchment paper lined baking sheet and bake for 25mins. I have 4 seasonings I make myself I like to use on them like my homemade vegan versions of Nacho Cheese Doritos Powder, Chili & Cheese Powder, Ranch Powder. But you can use what ever you want. and nothing wrong with just black pepper and salt.
  9. 2 points
  10. 2 points
    Yes, I did mean endoscopy, not ultrasound - uggg! Well, got new test results back, and my AT IgA is now at 1.7 (>7 is questionable, >10 is danger). YAYAYAYAYAY!!!! Got a bunch of other bloodwork done, thyroid, liver, pancreas, Vitamins, etc... Everything was good other than Iron which was a bit low, and Vit D which was borderline (normal for this latitude in the wintertime, though now i'll be bumping up my Vit D from 2000 IU to 3000 IU daily). I've been feeling really good lately too. I do still have times where I get the autoimmune fatigue, but they are few and far between
  11. 2 points
    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.
  12. 2 points
    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.
  13. 2 points
    Hi Celina, Welcome to the forum! This site has loads of info and a lot very knowledgeable folks who have been through very similar experienced. So you've not only found a great resource, but hopefully you won't feel so alone in this also. There's a lot in your post I identified with: I also went through coeliac testing and wound up with a negative diagnosis. It's strange, normally when you're told you don't have a serious condition it's a total relief, but when you're looking for an answer to symptoms which are both scary and life impairing it's almost a disappointment that leaves a bittersweet feeling. Like you I was left with NCGS as a diagnosis via exclusion and other than the gastro telling me to avoid gluten for life based on my reactions to it that was the end of the medical profession's interest. So first things first. You have this hard won knowledge: Which is the most important thing of all. YOU know how you feel on gluten and off it. You know this is real and you know how important it is to stick to the diet. You have a lot of healing and recovery in front of you. So your task is twofold, you need to find a way to eat safely at home and you need to communicate this to your family so they can get a better understanding of you and your condition. For the first I think you have to respectfully and tactfully begin preparing your own food. You could do this in batches at the weekend if college doesn't leave you much time. Make some bigger meals you can freeze into portions etc. Make sure you tell your family that this is not about them or their cooking! It's something you need to do to heal and to train yourself to live with this restriction. You can still eat with your family, share the washing up etc but this will both ensure you can avoid any mishaps and also demonstrate how seriously you're taking this. You'll need a cupboard and your own chopping board, mixing spoon, colander and a pan to avoid the risks of cross contamination. As above the newbie thread will help. Taking those steps will also help in the second job of communicating this to your family. If they can see you're taking this so seriously they'll begin to see it as less of a fad and more of a considered adult choice. You also need to educate yourself and then them about this condition. They react this way because they don't understand. When the average person thinks of gluten free they think fad diet, first world problems, neuroticism etc. They may understand digestion from their own point of reference. They may see gluten as something that 'doesn't agree with you' like they experience with spicy food or similar. They therefore translate their own experience and think 'a little bit won't harm you'. They don't understand gluten is triggering an immune response and our immune systems only need the faintest trace of something they perceive as a threat before they leap into action. They also won't have any idea how widespread gluten is, it's in our 'staple' foods which they've been told since childhood are an essential part of a healthy diet. It's in soy sauce, soups, condiments, chocolate bars. Even in some things that dont have gluten ingredients due to cross contamination. Everything in their past experience is telling them that this isn't serious and your lack of a bona fide celiac diagnosis just makes it that much harder to dispell their assumptions. You need to stop! They're not listening and the process is just frustrating you both. Tell them once, properly and then don't revisit it again unless they bring it up. Just focus on what you eat, and the healing process. They will see by your actions how seriously you take this and once they realise this isn't a reflection on them or some sort of attention seeking on your part they'll begin to adjust. Ultimately they're lucky enough not to need to become experts on gluten, you don't have that luxury however. Oh God yes! It's not properly understood yet, there's lots of scientific enquiry needed, much ongoing at the present and there's debate as to whether gluten or other proteins are the primary cause, but it exists, your symptoms are real and you need to treat it seriously. The better understanding you have of it, the better placed you'll be to tell others: Here's some fun bedtime reading: A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 I think you'll find the process of taking control over your food, your health and managing your intolerance empowering. When it comes to your body, you're the world's leading expert. When it comes to your health, you have to take it seriously and when it comes to what you eat, you HAVE TO BE SURE. One final point. The rest of your life started the day you went on the diet. You can look forward to improving health and losing symptoms you may not even have been aware of. You've found this out whilst you're still young which is fantastic! I'm jealous! Once you've nailed the diet nothing will stop you. Best of luck Matt
  14. 2 points
    So sorry to hear this it must be so hard and upsetting to worry for your son. I was diagnosed 1.5 years ago and i can tell you that as hard as it may be, try not to worry. It takes a while to overcome the gluten "withdrawal" and the symptoms do not just go away that quick. It will take at least a few weeks maybe longer for things to turn positive, but they WILL turn positive. He will heal fast children heal much faster than adults. He will be ok trust me, he will be ok. Stay the course and take care of him and yourselves as you start this tough journey. It gets better don't worry
  15. 2 points
    Welcome! I encourage you to read postings in our DH section. I do not have DH, but from all the posts I have seen over the years, DH can take longer to resolve. DH seems to have a mind of its own. You must be extremely strict on the GF diet. More so than celiacs with intestinal symptoms. Best to stick to Whole Foods and avoid going out to restaurants at least until you have mastered the diet. Temporarily avoiding foods with high iodine levels can help too. Remember, CD is an autoimmune disorder. When exposed to gluten antibodies start to increase (flare up). The antibodies can keep going and going. Everyone has different responses. For me, an exposure can last three to six months. The good news is you know the source of your rash -- gluten!
  16. 2 points
    Gerald it's exhausting enough to read that, so I can only imagine how you feel. I sincerely hope that you can get some relief from all of this. As I finished reading Kareng's reply above appeared and I have to agree with her. You've seemingly had a combination of western and alternative medicine and have also been exposed to so many different and conflicting ideas on what may be going on. I think this, in itself, is harmful. I know I came to a point when I had to stop researching, stop going on paleo blogs and even this site and just focus on myself and some very simple and achievable goals. Your body is ultimately one system so even though there are things going wrong with specific parts it can't hurt to take a step back and focus on overall health and good practice? Couple of minor suggestions that may help. It's good to get everything down on paper, but if you're planning on seeing a new doctor the level of explanation above is too much and they will likely 'switch off' long before the end. It may be useful to you to condense this into some very short bullet points. Try to keep it very matter of fact, include dates where you can and don't prejudge any diagnosis. Just focus on symptoms and any reactions you've noticed. If you have a go and post it here we can maybe help you get it into the best shape? If you can find a supportive physician you can then work together to pursue any further diagnosis. If you wanted to explore gluten as a potential cause (and it can cause an awful lot) then there's an faq stickied above and lots of useful info here via the search. Secondly, eggs are your friend There's little to no evidence that cholesterol in eggs has any impact on blood cholesterol. They're packed with protein and amino acids, I think 7 out of the 8 essential ones from memory. Unless you have a specific intolerance to them I wouldn't keep them out of your diet. Myself and many people here have been in comparable places and have experienced both physical and mental affects. You have found a good site. Welcome!
  17. 2 points
    We use "Find me GF", but......we carefully review the comments. We only trust reviews that mention celiac disease. Otherwise, the comment could be just a GF dieter who is trying to lose weight and does not consider cross contamination. Even then, we talk to both the manager and the head chef. We do not place much faith in wait staff (no offense, I was one all through college). Honestly, we do not eat out often. However, we dine with friends. We just eat before we go and order drinks. It is really all about relationships and not the food.
  18. 2 points
    First, I want to thank you for your work on this, which won't be lost. I'll look it over and try to incorporate it into our existing FAQ.
  19. 2 points
    Today (1/30/17) I called OraLabs (1-800-290-0577; oralabs.com) and asked their customer service rep if their lip balm was gluten-free, and if their manufacturing facilities may have any cross-contamination issues. The rep quickly responded, 'Good news for you! All OraLabs products are made with gluten-free ingredients, are gluten-free, and are manufactured in a plant that does not allow any wheat, barley, or rye and are impeccably clean.' Good news for me since my dental hygienist gives them to me if I've been a good patient.
  20. 2 points
    I can understand why you are frustrated. The child should not have been taken off gluten before the all testing was completed. The University of Chicago celiac center is a great resource for information on celiac disease. The usual testing process is blood antibody testing followed by an endoscopy to take biopsy sample from the small intestine. They use a microscope to check the biopsy samples for celiac type damage to the villi that line the small intestine. Gut damage can lead to malabsorption of nutrients, resulting in small stature, slow growth and dental problems in children etc. I suggest you do a search for a celiac support group in your area. They may be able to recommend a good doctor for celiac testing. ************************************************* http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ What is a gluten challenge? A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 *************************************************
  21. 2 points
    I thought the style of your post was funny I've recently been dealing with a similar situation and have finally gotten to the bottom of it (I think). I like you, live in a shared kitchen. Although my roommate is very considerate and doesn't eat much overtly glutenous food, I've developed a few strategies that seem to work: separate everything buy small plastic basin that fits in sink, wash dishes in this (avoid any residue/crumbs/whatever that might be stuck to the sink) wipe down all counters, handles and taps that I'm going to touch before cooking I was still having some small problems with CC after this, so I turned to my own food. I got rid of everything that wasn't certified gluten-free (or from a very reputable company), excepting unprocessed fruits/veggies, plain dairy, rice and shelled nuts. I think this was the most key part, as I think that a lot of naturally gluten-free grains that are used in supposedly gluten-free products have enough contamination to cause problems unless the company is specifically monitoring this (as required by the gluten-free certification). Previously, I had been purchasing a lot of food items labelled as gluten-free, but with from smaller local companies that I presume would not actually test their ingredients or final products. Although many celiacs do have other digestive issues with different foods, I really think that many of people's problems with other grains or other ingredients are related to this. I also replaced all my shower stuff with products that were certified gluten-free. Previously I had been using products that didn't contain gluten explicitly, but were from companies that couldn't guarantee their products were gluten-free because they didn't test them. I know a lot of celiacs are not concerned by this sort of product, but I guess I eat a lot of soap when I shower as I noticed a big difference within a few days... Hope this helps.
  22. 2 points
    Was at Whole foods when I saw them putting out fresh bins of lettuce, peppers, and tomatoes (Salad without contamination) and jumped at fixing myself something. I was looking at the other gluten-free options they had and they had a garlic and herb Couscous dish labeled gluten-free (No intention to eat it just thought this was wrong). Now I know in America most Couscous dishes are wheat, so as the flag went up I asked on of the staff behind the counter to look it up, and low and behold it was a wheat based version. Just a reminder to always be watchful and if in doubt insist to be shown the ingredients, and ask about preparation. On a side note I know a few years ago you could find rice versions in the store along with millet versions, but I have not seen these in the past year.
  23. 2 points
    Hi Weekendwarrior, I was diagnosed last year, and I am a lot like you. (I am a mom, though). I don't get GI issues. I was diagnosed due to anemia, but I have the muscle aches, fatigues, joint aches too. With regards to my own home, we eat gluten-free dinners every night. Usually grilled meat and lots of veggies/fruit. I did get a couple of new pots and pans, a new cutting board, and a new glass pyrex dishes instead of tupperware(which we really don't use much anymore) when I was diagnosed. We use the Bisquick gluten-free pancake mix for Saturday morning pancake day so that the griddle stays gluten free. I keep one pot separate for making real mac and cheese for the kids, but all of our other pots are gluten-free. My kids eat gluten cereals in the morning. Since I am the one cleaning up the kitchen after breakfast, I take great care to rinse the leftovers down the sink, rinse the bowls extra well so that there is NO residue on them from the cereal and then clean the sink afterwards. I send sandwiches for lunch (so all the crumbs are at school). they get plenty of gluten outside of the house and for breakfast, so I don't feel bad that most of the snacks and shared meals are otherwise gluten free. We tend to eat out at a restaurant about once a week as a family (eating in restaurants is a whole other conversation, but it was a tradition we had before the diagnosis so I have tried to keep that up because the family enjoys it) I have found that it is too much hassle to explain a shared kitchen to grandmothers and baby sitters. They just don't get it. So, if someone else feeds the kids, I make sure those meals are gluten free. Otherwise, the whole kitchen is contaminated. I wish you luck. It's a hard a adjustment, but doable.
  24. 2 points
    Welcome to the forum Sharlotta! If you are trying to learn gluten-free eating, you came to the right place. We do have a thread for beginners called Newbie 101 in the "Coping With" forum section that might help. Also, we have plenty of helpful members who can steer you forward. Feel free to fire away with questions! P.S. If you click the green circled plus sign right of your thread title, you can follow this thread and gets emails when someone replies to it. Very helpful!
  25. 2 points
    I know exactly what you are talking about. I share a house with gluten eaters and I think that accounts for some cc. Also, I tend to buy the sort of food that you might find in Coeliac UK's book that does not declare it is gluten free, but they deem safe. Maybe small amounts are getting in that way. But my underlying neuro symptoms, which I think are borne of years of eating gluten not knowing I shouldn't be, are ramped up with stress, fatigue, caffeine, poor diet and if I don't eat regular meals. My nutritionalist has told me I need to eat more protein and less sugar, and that should help. Sometimes I think it is a perfect storm of all the above that brings them back. BTW - I get the twitching eye, never a problem until I first got ill. Now it is one of my 'amber warning lights' to start getting more rest, to take time out, to eat better and to reach for the magnesium and B12.
  26. 2 points
    That makes no sense. He just needs to not have gluten in his mouth when he kisses you. A good brushing and flossing and rinseing should be fine.
  27. 2 points
    Hi Allgood, Have you ever scraped your knee? The skin probably formed a scab as it was starting to heal. Even with that scab though, I bet it hurt every time you touched it or rubbed it for a while. You gut is actually skin-like cells, and is considered specialized skin cells. That doesn't mean you'll get a scab in your gut, but that it will go through a healing process. While it is going through that healing, it is also still being attacked by the immune system. Otherwise known as "picking at the scab". The gut tries to rebuild it's villi lining and the immune system tears it right back down. The immune reaction should taper off but it may take a month or several for that to happen. The surface area of the small intestine is about the size of a tennis court, so we are talking about of lot of area to heal. The other thing that is probably all wrong is your gut bacterial flora is possibly slightly FUBAR. Well, not really, but it is probably somewhat out of whack from all the gut damage and poor digestion. Your healing gut will have increased surface area as the newly repaired villi provide more surface area. The bacteria will have new homes (more surface area) and multiply. So things can be unsettled for that reason too. Bacteria are good though, they help us digest foods and are even involved in some vitamin production. Villi lining the small intestine are good too because they produce enzymes that also help digest and absorb foods. Changing your diet changes the gut bacteria also, but a paleo diet is a good choice. It may take a while for things in bacteria land to settle down though. Healing is a process, and it takes time. Sometimes a lot more time than we would like.
  28. 2 points
    I think this demonstrates that you still don't have a proper understanding of how celiac disease works. you can't just make up a theory and decide that's how it works. having a small amount of gluten now and then is still going to trigger an autoimmune reaction, make a person's antibody levels rise and attack their body. which can take weeks or months for them to go down. that is why cross contamination is such an issue. just because someone isn't screaming in pain doesn't mean damage is not being done inside their body. people can have no symptoms and damaged villi. if anything I would think eating gluten after years of not eating it would result in a stronger reaction for example how many people feel worse doing gluten challenge after not having it for a while.
  29. 2 points
    I called Tylenol/Johnson & Johnson today (1/23/17). Customer Service told me that only Tylenol 8 hr Arthritis is gluten-free. She also told me that they are launching a new product that is also gluten free: Tylenol Extra Strength Rapid Release Liquid Gel Caps. She said the new gel caps aren't available in all areas yet, but will be available nationwide soon. She said that the other Tylenol products can't be guaranteed as gluten-free concerning the pregelatinized starch, sodium starch glycolate, or ingredient & manufacturing cross-contamination.
  30. 2 points
    I had my follow up with my GI today. I went gluten free on November 8. My TTG-iga was >100 when I was diagnosed. I had the labs re-run last week and my number is 12!!!!! I was ecstatic. I even grabbed my doctor! I just wanted to share with you all. You know how bad my anxiety is and I've been dreading this - panicking that I'm not improving. I am so happy to be wrong
  31. 2 points
    ^WRONG Quote (site will not seem to copy the quote that was intended as I meant to do GFinDCs above this one) I Pm'ed him a bunch of options will post here for others to see there are sources with links, along with a few updates of places I forgot, you can ask local grocery stores to stock them and check the where to buy on the sites. Few of them you can order directly like the spices, gerbs, teas, etc. But there are many more gluten-free options now days then back when many of us started. As for Pizzia, I went to the last gluten-free Expo in my area.....there were over 6 different gluten-free Pizza makers there some had great reviews so do follow up on that. Most are only in certain areas, but you can order them normally. http://iansnaturalfoods.com/allergy-friendly-products/search-by-allergens/?tax_products_tags[]=gluten-free&wpas=1 ^Ians gluten-free options you will find sides, baked/fried snacks, onion rings, chicken strips, cheese sticks, fish sticks, pizza bread. etc from them that are good subs you can find where to buy them or even have your local grocer stock them on request. Best thing about Ians is you can go to their site and adjust the filter to find stuff free of other ingredients. http://udisglutenfree.com/product-catalog/ ^ Whole lot of food staples from this company (none safe for me) but all gluten-free alternative you can have, udi is like the cheap bargain gluten-free brand alot of there stuff seems lacking but they have a little bit of everything. From microwave dinners, pizzas, granola's, and cookies. http://www.pacificfoods.com/food.aspx ^CHOOSE the Wheat and Gluten Free buttons to get a list of soups, bone broths, stocks etc these are great for making alot of your own dishes http://www.vansfoods.com/our-products ^ go to breakfast guys, I keep there cereal in stock for when I have a friend come over. https://enjoylifefoods.com/our-foods/ ^ this is the only ones I can have the soft cookies are great, love their baking mixes, Free of Pretty much all allergens including corn. https://www.mygerbs.com/ ^Love the dried fruit, and pumpkin seeds from these guys, they also have other grains, granola, seeds, etc. http://www.authenticfoods.com/ ^Great source for flours, baking ingredients etc. all you basics http://www.glutenfreeoats.com/ ^ I bulk buy oats for my cooking business from these guys only gluten-free oats I trust and the best in the industry for testing, even other companies like Gerbs source from them for the oats http://www.spicely.com/collections/organic-spices-seasoning ^ Salt free spices, and pretty much the only spice company I trust, they have many certifications not just gluten-free pretty much the works. http://www.republicoftea.com/ ^Great tea company, all gluten-free certified teas, both bulk and bags. http://www.yumrush.com/gluten-free/ ^The soups from this company can be a good option for batch soup mixes, I use the dip mixes with coconut yogurt and a few additives to make gluten-free, and Dairy free Veggie dips. They also have some flours and noodles that are gluten-free. http://www.lotusfoods.com/#products ^ great rice ramen noodles if you need your ramen fix, also have rice, and rice crackers but I prefer lundburg for this. http://www.lundberg.com/products/ ^Go to rice guys, WHOLE bunch of instant rice dishes, every cuisine you could want, all gluten-free, they also sell some of the best rice options, rice crackers, rice cakes, even rice chips These are just some options I prefer grain less options myself I cook for others often as a gluten-free chef and have learned about these over the years of doing so. I personally use kelp noodles, Miracle noodles and Miracle rice as they no carbs for my fix, then just eat a bunch veggies and fats like nuts, seeds, egg whites, and Vegan protein powders protein. If anyone else needs help finding ingredients or condiments I spend most my days cooking and shopping for side jobs so I know where to find near everything. I can also point you at places to purchase these and other specialty diet needs like soy, dairy, corn, peanut free options and at the best pricing for you area if you want.
  32. 2 points
    Thanks everyone - yes I do know endoscopy isn't actual surgery, but anything to do with needles and hospitals sends me into a panic! I'm going to find a new specialist - this one has made me doubt myself and my health so much and it seems to be so unwarranted I don't need that in my life. And plus last time he 'tried' to get me to do a gluten challenge I lasted five Days before having to be admitted to hospital with severe dehydration and a 2kg weight loss. No way I could last two weeks even! Thanks all for being there to back me up appreciate it Biopsy isn't always needed for a diagnostic assessment and diagnosis!
  33. 2 points
    Most people on this forum have celiac disease. This is an immune mediated disorder: "The only treatment currently available is a lifelong strict adherence to a gluten-free diet that is followed by an amelioration or a normalization of the histological lesions " Please note lifelong and strict adherence and the absence of the word optional Some people, such as myself, have what's currently termed 'Non celiac gluten sensitivity' - this is less well understood and is to some extent a diagnosis of exclusion, once celiac is excluded then those patients who demonstrate a reaction to the gluten free diet may be deemed NCGS. One researcher in the field, Alessio Fasano, estimates that up to 6% of the population may fit this category, others will doubtless disagree. These people do not show the atrophication of the villi associated with celiac but they can show a variety of other reactions, often neurological. The latest research suggests these people also undergo an immune mediated response to ingesting wheat. I really wish I could be more definitive, as this is the box I'm currently in but the condition remains subject to debate and there is also ongoing discussion about whether this condition is in fact not caused by gluten and perhaps by another component of grain, see the Fodmap Monash study for more. Finally there are people who may have decided to cut down on gluten, perhaps because of IBS or other symptoms. Some may find their digestion improves and thus avoid gluten without eliminating it. The people on this forum are almost entirely from groups one and two. They aren't playing it safe, they're dealing with a problem whereby gluten (definitely in celiacs, possibly in NCGS) triggers an immune system reaction. The immune system doesn't care about quantities or the level of villious atrophy in the intestines. That reaction may present on the skin where it can last for many months, or the brain where a horrible depression or brain fog may appear, or the eyesight, or via chest pains, or rheumatoid pains or heart palpitations. The quantity ingested could be tiny. The sensitivity of the immune system to gluten can rise the longer gluten is excluded. Of course there's a third group of people listed above and for those people there may be scope for gradually reintroducing gluten over time. To the best of my knowledge, the first two groups do not have that luxury. Hope this is of help. Matt
  34. 2 points
    Nice to see that you are surfing the web and doing some research! It probably would be better if you read more creditable medical sites from leading celiac groups or research centers instead of bloggers who might be trying to sell you something. But the one you sited does contain some good facts. Did you happen to read her other article about how she regrets making her son go gluten free without a proper diagnosis? http://kitchenlib.com/physical-health/celiac-testing-myth3-gluten-free-life-no-reason-to-test/ Granted some people have no choice (for many reasons), but to try the gluten-free diet. But you seem to have good medical access. Obtaining a endoscopy would not be impossible for you. I understand that your current test results are not clear. A biopsy could help you and your doctors determine if you have active celiac disease. In the event the biopsy is negative, you can continue to consume gluten, but continue to get tested every few years (like you have been) as celiac disease can develop at any time. Only you and your doctors can determine the best course of action. On a side note, since when have colleges started to weigh final transcript grades? The max you can get is a 4.0.
  35. 2 points
    The grain industry promotes the idea that you need grains to get proper nutrition. This is false. Eat a diet of whole foods including meats, veggies, nuts. eggs. maybe a little fruit. No grains are essential nutrients. There are alternative grain like flours people do eat as substitutes. Some are amaranth, coconut flour, millet flour, bean flour, potato flour, rice flour, corn flour, etc. These substitute flours are used so people can make baked goods like what the GE's (gluten eaters) eat. We don't talk to those people. Kidding! If you listen to the grain industry advertising, you may believe you are in terrible shape without Wheaties every morning. Not true. What is true however is that many gluten-free baked goods are lower in nutrition than their gluten counterparts. This is partly because the gluten-free baked goods aren't required to add vitamins to their products (yet) like grain industry products have to. Grain industry products were regulated to add those nutrients because their refined flours were worthless carbs and fluff. They do rise nicely when baked though (due to gluten). If you depend on regular white gluten bread for your vitamins you are basically eating a vitamin pill for your needs. Real whole foods are the proper place to get vitamins and minerals that our bodies need. Multivitamins aren't a bad thing, I take one myself. But trying to replace nutrition from baked gluten goods is essentially trying to replace a vitamin pill. Read the ingredients on the packages to see.
  36. 1 point
    My advice is is always get and retain copies of all lab tests. Keep notes on doctor visits and outcomes. I have kept 20 years of records. My new doctors love it. I also put a family medical history (first names only) for my extended family. It has helped so many!
  37. 1 point
    I think others have covered most of your questions, but I thought I would chime in on the sports part. I am a fairly elite level distance runner and ran on my university team throughout undergrad. Retrospectively, it is obvious to me that having undiagnosed celiac disease had a huge impact on my ability to train and compete consistently, but I still managed to achieve quite a lot during this time. To be honest, when I accidentally gluten myself and take stock of how bad I feel, I am completely shocked that I was even able to train seriously at all. I think the key is respecting recovery for endurance training - with celiac and without. Even before I knew what exactly was wrong, it was obvious to me that my capacity to recover from hard training efforts was unreasonably low. For a while I tried to push through this, but this ended with me essentially lying in bed for weeks at a time because I was so sick, which was frustrating. After a year of this, I figured out the bounds of intensity that my undiagnosed celiac self could tolerate without implosion. I seemed to be able to handle the same training volume, but high intensity efforts and races left me crushed. This "speed limit" strategy was not ideal, but it was what I did to survive the situation - varsity sports are a high pressure environment, and despite trying to get answers from doctors, I got none (because apparently being able to run for more than 30 minutes consecutively means that it's impossible to be seriously ill according to most doctors :| ). Anyways, flash forward to what happened when I started the GFD and recovery. It took about a month for me to notice a huge difference in my running. I still wasn't entirely healed by any means, but it felt as if someone has lifted a weight from my back (this was not literal as my weight didn't change). It was the most encouraging feeling. Despite feeling a lot better, I maintained my previous protocol because I knew that my body needed to focus on healing itself from the years of damage. I tried to focus on having fun during workouts and not timing myself. I also began training by myself to remove any comparison I might have inadvertently made between myself and my teammates. I would definitely recommend continuing with triathlon. I think that continuing with running and racing has been one of the few joys I've had since diagnosis. It allows you to feel safe, normal, empowered and keeps your body in better condition to fight the disease. Best of luck.
  38. 1 point
    Well back in 2015, Columbia University found that many probiotics (they were recommending them to their celiac disease patients and wondering why they were not getting well) contained gluten: https://www.sciencedaily.com/releases/2015/05/150515083232.htm Your current symptoms could be related to gluten. I know personally, my symptoms have changed each time I have been glutened. The only way I know that I can blame gluten is by getting antibodies testing. I prefer (when going off antibiotics) to use certified gluten-free only probiotics. Why? I have enough on my plate, and frankly, it is a risk I just do not need to take. I do not use probiotics except after antibiotics use. Instead, I eat fermented foods. If it is just a period of adjustment, my old doctor would have recommended easing into them and building up a tolerance. Really, sauerkraut is good for you but eat it three times a day for a week, and your body probably will not be happy. Let's hope it is not SIBO. Four weeks? Maybe you should see your doctor to rule it out. I hope you feel better soon.
  39. 1 point
    I've not been doing it either, but I've just read the BBC research and have resolved to do it in future! I like rice and have the coconut milk which is rice based too. So I'm probably as at risk as anyone... You need 5:1 water and pre and post rinsing as well as the soaking. This blogger has collected the advice: http://www.treehugger.com/green-food/how-cook-rice-remove-most-arsenic.html
  40. 1 point
    Takes a bit of getting a hang of it but once your get your issues down and a nice regime of gluten-free meals and meal prepping. It becomes much easier, I am now a master at reading labels, I stick to brands I trust, eat the foods I know are safe for my diet with with restrictions. And I am getting my energy back that I had 4-5 years ago, back working weights and power walking 10 miles a day. Still a bit under weight and having a few issues, got a set back the other day with a slight poisoning but after 2 days most of the bad symptoms are gone, just the numbness, bit of pain, and a few other nerve issues that will go away in a few weeks. WE all have had our bad times and most of us here are are healing and have dealt with similar issues. Once you get your diagnosis done and get a few months into the diet your sure to start feeling better. There will be bumps along the road, you might come up with another allergy, or you might be fine just removing the gluten. We as a community here will be with you then time helping you with moral support and the knowledge we have learned dealing with the issues ourselves. You might want to also look into seeing if there is a local celiac support group in you area. You might make some new friends in real life that you can cook and eat with. So just take a step back when you get overwhelmed your not alone, I myself will keep you in my prayers, and I wish you the best of luck and hope they get you the results on the test as quickly as possible.
  41. 1 point
    Hi Boringandsafe, There is a doctors section of the forum where you can search for doctors people like. Another thing to try is searching for a celiac support group in your area. I think the main thing is to keep her as gf as possible. Neuro issues are slow to improve but they can and do get better in time. A shared oven shouldn't be too problematic IMHO. I use a shared oven myself. You can always put aluminum foil over things or a lid of some sort. I do that sometimes but even when I don't it hasn't been a problem. I don't bake gf foods at the same time as gluten food is baking though. Has she been tested for vitamin levels? Welcome to the forum! http://www.cureceliacdisease.org/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis/ What common nutrient deficiencies might an adult experience prior to diagnosis? Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015
  42. 1 point
    Yeah I went through the family thing also in a shared house for years. I love my family but they could not comprehend it, they are very old fashioned, and have their firm mind set about things. I have posted trauma post about some things I had to deal with. My symptoms are more in my nervous system, brain, and gut not as obvious as a skin rash, They thought I was just going crazy, I did do and thought I was going to die before we figured it out. But I would suggest buying your own foods, keeping them in your room, and fixing your own meals, Use Freezer Paper on prep surfaces. I also suggest cleaning all things you might touch while preparing foods like fridge handles, knobs, drawers, facet handles. Or opening and turning them on before starting to fix you food then using clean gloves if in a highly contaminated house. I had my own issues with people believing me over the years also, I recall my time in college and living with my parents and the limited time I had to cook meals and the ease of just going with whats available. I hope the following links will help you track down some foods you can eat and easily prep. Although against the normal whole foods approach the college situation these might help. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ Another idea is setting up a small prep area in your room getting a few new appliances. Mini Fridge, microwave, and a small griddle works, might also see about ricecooker/steamer/crockpot combo they sell on amazon or walmart. Buy your own GF certified foods, keep them in your room, and have your own set of plates, cups, and utensils. Tell your mother your practicing living on your own if she gets disgruntled >.> I might suggest getting a new crock pot and doing stews, soups, gruels, etc in bulk and repacking them in reusable NEW Tupperware for your dedicated GF foods, This way you can reheat meals quickly, Vacuum sealers and making homemade steam pouches where you put veggies, seasonings, etc in and make just pull from freezer, poke holes and zapp in the microwave are a easy go to meal fix also. Do not worry about your family focus on your health and hope they will come to accept it when you start doing much better.
  43. 1 point
    Hello Celina, You mentioned that you are living at home because it is more convenient. I admire that you are going to nursing school but maybe you might want to consider moving out so you can better control what you are eating. Being in school is stressful, worring over every meal is even more stressful. Anxiety alone is tough on your body and can increase your stomach acid which can lead to more symptoms. I'm sure your family loves you but is a little overwhelmed with your dietary restrictions. I agree with GFinDC that you need to take control of your diet and environment. Cross contamination is real, especially to those who have Celiac Disease or Gluten sensitivity and many families struggle with this. So give your family some time. Welcome to the forum!
  44. 1 point
    On Jan 22nd, 2017 I called Neutrogena/Johnson & Johnson Customer service about their product Neutrogena Ultra Sheer Dry-Touch Sunscreen 100+ The customer service representative said that there are no gluten ingredients in the product. She also said that there is only 1 plant that makes this product, which is in Los Angeles, CA, and that they use Good Manufacturing Practices (GMPs). She could not tell me if other products manufactured in the plant contain gluten or not.
  45. 1 point
    Oh! well....if I had known that! I would have told you you can't kiss anyone until you have dated them for 3 years and are over 25! lol
  46. 1 point
    It's common to get worse when becoming gluten free. It's going to take a while. Your body healing will deplete your stored nutrients. I got really sick when I first tried to be Gluten-Free, and I've gone through stages of sick and not so sick without breaking my diet. Itll likely just keep happening until the healing is done. It could also be your own stress at times because it is a big change and just being aware of your overall health brings up the reminder that celiac is something to deal with in many areas of life. Drinking water helps me a lot. How's your fiber intake? Balanced from both fibre types and meeting your daily needs? Paleo diet is tricky at times and not always the best route when healing is trying to take place. Also you could benefit from eggs for your nerves, it helps me to eat 3 a day. I've been Gluten-Free for about 10 full months and my intestinal issues are not gone. Also some foods are inflammatory on their own and I know too much of them makes me a little sick.
  47. 1 point
    Hi CT, I think it is good that you are going to try going gluten-free. You keep saying you want to try gluten in a few years? Maybe you want to try eating pizza and donuts again in a few years? Or drinking a beer? The thing is, You don't have to wait a few years to try those things. There are gluten-free pizzas, donuts, bread, beers, and cereals available now, and have been for several years. It seems like there are more gluten-free food options every year. So there is no need to wait a few years, go out and get some of those gluten-free goodies now and live it up!
  48. 1 point
    Now we are getting somewhere indeed! https://www.verywell.com/celiac-disease-cheating-is-it-okay-562741 I don't see where anyone told you that you would die instantly or automatically get a terrible disease if you cheat on the gluten-free diet. You are exploring the idea of a self-correcting plan IMHO. If you cheat in the future and have celiac disease, you will most likely experience symptoms that will make you wish you hadn't cheated. And therefore if you have a bit of common sense, you'll stop cheating. If you expect us to tell you that it is ok to cheat on the gluten-free diet and harm your body, you are barking up the wrong tree. Why should we do that? Never mind, I know the answer. There is no good reason for anyone to cheat on the gluten-free diet if they know it causes harm to their body. Temptation is not a good reason. There have been forum members who cheated on the gluten-free diet before. One cheated for 5 years and then had to have an emergency colostomy done. She came to the forum and warned everyone what a mistake it had been and that she would never eat gluten again. Somewhere there is a whole thread on cheating on the diet if you want to read it. Would you tell an alcoholic to cheat on their diet? Why not? If not why do you think you are some special exception and it is ok for you? Just because we don't tell you what you want to hear doesn't mean we are telling you wrong things. Going gluten-free for life is a big change. Nobody said it was easy. If you are celiac, the alternative of continuing to eat gluten is a slow progression of illness and eventual death. Sometimes people on the forum go back on gluten for testing, called a gluten challenge. And sometimes they report new symptoms that don't go away and make them more miserable than before. A gluten challenge is 12 weeks of eating gluten. Occasional cheating, while not recommended, may not cause big problems right away. But nobody can guarantee it won't at some point. If you want to play Russian roulette with your health, nobody can stop you. Nobody, but you.
  49. 1 point
    Alison sounded like she was a wonderful person. May she rest in peace.
  50. 1 point
    I was diagnosed with Celiac disease on January 25, 2011. I had been losing a lot of weight, fast. Once going gluten-free, and my innards began to heal, I put it back on. And then some, like 15 pounds MORE than I started with BEFORE I lost weight being ill. I was stuck on the whole "I have Celiacs now, it's going to be impossible to lose the weight, etc. etc. etc..." and I lived with that for about 4 months. I was unhappy how I looked, hated looking into a mirror. Lost my confidence. Then, I realised something. Celiac disease did not take away my body's ability to lose weight. I gave up. Even though I have Celiac disease this same formula holds: Calories in < calories burned. Less input, more output. I gave up eating gluten-free bread, it is more calories than the wheat crap I ate before. Ditto pastas. I eat a slice of bread maybe once a week now. I started online Weight Watchers. I walk, use my exercise bike, play with my dogs in the back yard. I clean my house more vigorously. And, I am losing weight now. Being Celiac didn't stop me from losing weight, THINKING that I couldn't lose weight because I had Celiac's kept me from losing it. Just a thought. Hope it helps someone get over what I was going though, which is what I call the Celiac Weight Dilemma. Commercially prepared gluten-free foods are high in calories. If you eat them, you need to burn them. I now eat tons of fresh fruit, veggies, veggie and chicken stir fries, some beef (lean), and can now evern eat dairy products.