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  1. 2 points
    Yes, you want to help your parents but you have to help yourself first. If you can't take care of your dad, then don't try to. If you are sick, you can't take care of him. So your father needs to make other arrangements. Sounds like he can fix food and do things for himself. Maybe you or other family members could just check in on him daily, shop for him, etc. or he can get a helper to come in for a few hours a day. Where are these other selfish family members that think you should sacrifice your health and life to help your dad? Why can't they help? You need to assert yourself . Tell them you have a serious illness and you can't do this anymore.
  2. 2 points
    I have silent Celiac confirmed blood and 3 biopsy. New Drs still question it because my bones are fine. No nausea or gi symptoms. No anemia. Hence silent. The damage was visible on the endoscope and i saw the video of pink turning to grey desert about 2 feet into my upper gi in the recovery room. My Dr. Said in recovery, you have Celiac you can never eat gluten again, do you understand what i am saying? That was the last time i saw him and my only follow up advice regarding Celiac. I have found I am my own heroine when it came to my recovery. Read lots of books, medical papers and research as well as nutrition and cookbooks. I had folowup bloodwork checks every 6 months all clear and nutritional blood tests to supplement my diet. I had a colonoscopy and pill camera last year and my gi is pristine. After 10 years i am confident i will not perish from Celiac or complications like my father and that keeps me going.
  3. 2 points
    Hi Johnny, IMHO, having silent celiac is tougher in some ways. You don't have symptoms to tell you if you if consumed gluten, so you have to learn to be careful anyway. You are right that silent celiac can still cause health issues. In the case of villi damage, the impact is that we can't absorb nutrients well. Nutrients like vitamins and minerals and fats and sugars. Things we need for our bodies to heal and maintain their cells. You may have trouble absorbing fat soluble vitamins, like vitamin D. Or you may become low on vitamin B-12 and develop nerve related issues. You may have trouble sleeping due to not being able to absorb magnesium, or have weak bones from lack of calcium absorption. Your hair may get brittle and break easily, or fall out. If you were a child you might not grow to normal height, or your teeth might rot from lack of enamel. Basically, a person with untreated celiac disease damage is starving on a normal diet. So there are lots of potential problems that can happen. This is just a short listing. You are also right that many processed/baked gluten-free foods are lacking in good nutrition. And they cost more! That's why it is good to change your diet to mostly avoid processed foods. Instead stick with mostly meats, veggies, nuts, and fruit. These things are actually food. Sometimes we call them whole foods. They have very few ingredients, usually one ingredient in fact. Anything with more than 3 ingredients is less desirable in your diet. Dairy is often a problem at first also. One thing to consider is that celiac damage can lead to other food intolerances. I can't eat nightshades, dairy, carrots, celery, soy, etc. Probably because I had untreated celiac damage for years and my body developed these additional food intolerances. Anyhow, it takes some time to adjust to any new diet. And the gluten-free diet is the same, except that it is medical diet, not a personal preference diet. I generally think it takes people about 6 months to adjust to eating gluten-free. But it is 6 months well spent.
  4. 2 points
    @Wheatwacked — My daughter has been tested for celiac disease (full panel). She has another test ordered to be taken at the end of summer. She consumes no gluten within our home, but she does eat gluten while at school, friends and at restaurants. She does have a high probability of developing celiac disease in the future. Other than Raynaud’s, she is healthy. No aches or pains, no anemia (which is how I presented), etc. As far as eliminating gluten for her now, I have not read that eliminating gluten may prevent other autoimmune issues from developing (no concrete studies). I have concluded that the Standard American Diet full of processed foods (chemicals) and sugar is most likely one of the main causes of obesity, diabetes, heart disease, cancer, and other ailments too plentiful to list. As a human race, we have been consuming wheat for a long time. We have not been consuming sugar and chemicals (as least as much as we have been consuming over the last 50 years) ever. I believe this because I have Type 2 diabetes and I am thin, exercise and now...eat a lot less sugar and processed foods. Too late for me, but I am worried about the next generation. I am not going to get into GMOs as that is a personal belief and I am not interested in debating it, but celiac disease was around long before GMOs were developed. Please do not worry about my daughter’s dyslexia. She inherited that from her Grandfather who was a successful businessman. She is also at the very top of her class, so she is doing well and has learned to adapt.
  5. 2 points
    If you haven't already, try tracking down a book by Alessio Fasano called Gluten Freedom. The Fasano diet gets discussed (briefly) in this book, but the rest of the information is very helpful as well. I follow the Fasano diet after dealing with persistent DH, despite following a gluten free diet for a couple years. I've dropped processed foods, including those that are labelled "gluten free". It has cut down on my options, but my rash is diminished notably in the past month or so. Note that the Fasano diet is not intended to be permanent - the idea is that by following it for 3 or 6 months you should be able to heal your insides, allowing you to go back to eating the "gluten free" processed foods without incident. Best wishes to you. I know from personal experience that this is difficult, but by posting here I think you're taking the right measures to get better.
  6. 2 points
    I just want to echo this. I have a persistent case of DH that wont' go away despite being nominally gluten free for a couple years. (I've been on dapsone a while too.) I've adopted the principles above - including the Fasano diet - and I've seen significant improvement in the past month. It is a lot of extra work, but if you're serious about getting better I recommend staying away from food you don't prepare yourself, stay away from processed food (even if it says "gluten free") and stick to the foods highlighted by Fasano. Be well!
  7. 1 point
    Nope...gut still dictates my life. It has things other then gluten it has issues with...this is the standard each person is different but with this disease you develop food intolerance issues and sensitivities. I know many that have issues with Xantham gum, we have a few members with issues to tomatoes and other nightshades. I think 2 members have issues with onions and garlic. I can not eat Dairy, Soy, peanuts, certain spices, xantham gum, fructose, glucose, certain carbs, added food grade cellulose, and allergies to whey, corn, etc. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life Common problems are as mentioned dairy, soy, some have issues with peanuts/legumes. Break down to a whole foods only diet and keep a food diary, you might find certain ingredients in those "gluten free cookies" are bothering you like the gums, rice, sugar, dairy, etc. then you just find a version without them and use it as a treat. https://www.wikihow.com/Keep-a-Food-Diary
  8. 1 point
    Sounds like you might have gotten glutened, even tiny amounts will make me become more numb to pain, heat, and start dropping things. Read the Newbie section...medical gluten free had one hell of a learning curve and is very strict with having to replace certain items and utensils and read every label. You will react to less then a crumb with celiac...gluten is a protein like blood...think of a CSI tech and finding it lol. https://www.celiac.com/forums/topic/91878-newbie-info-101/ Yeah 5 years+ on the diet I am now starting to see some improvements with feeling. A few things that can help. Magnesium daily like Doctors best at night. B-vitamins I take Liquid Health Stress & Energy and Neurological Support 1 tbsp each 3 times a day, Vitamin D and bilberry have been shown to improving healing. I had the gluten ataxia with nerve damage and brain damage as a symptom.
  9. 1 point
    What a disappointing comment! I thought being gluten-free was going to make me glamorous eventually...... I wasn't sure how many years it would take..... Maybe after the first five and still not glamorous I should have realized it wasn't happening? 🤪
  10. 1 point
    Still says contains wheat, hydrolyzed can be gluten free...and nothing about testing. >,> does not matter to me I do not eat potaotes anyway and they have corn oil and milk derivatives. BUT as a side of caution I would still never suggest a celiac eat at a Mc Ds with all the chances of CC, poor employee training. Maybe the prepacked yogurt and apple slices but nothing cooked on their equipment. You want fries...go to a dedicated 100% place or buy some ore ida ones.
  11. 1 point
    The FDA has issued rules on the labeling of foods as gluten-free. The standard is less than 20 PPM of gluten. The FDA set that level because their studies showed most people with celiac do not react to foods with that level of gluten. Some do react though. http://www.bendbulletin.com/localstate/6257556-151/lawsuit-bend-caterers-gluten-free-meal-caused-childs-severe https://www.riverfronttimes.com/foodblog/2017/06/21/restaurant-sued-by-customer-claiming-gluten-gave-him-permanent-injuries https://www.menutrinfo.com/food-allergies-impacting-restaurant/ http://www.sheknows.com/parenting/articles/1078237/teens-food-allergy-death-spurs-lawsuit-against-restaurant https://www.allergyeats.com/panera-disaster-the-food-allergy-lawsuit-and-why-everything-went-wrong/ https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm Does the final rule apply to gluten-free claims made for foods served in restaurants, including cafeterias and buffets? The gluten-free final rule applies to packaged foods, which may be sold in some retail and food-service establishments such as some carry-out restaurants. However, given the public health significance of “gluten-free” labeling, FDA says that restaurants making a gluten-free claim on their menus should be consistent with FDA’s definition.
  12. 1 point
    I wouldn't trust McDonald's on anything but black coffee. Many of their items are nominally free of gluten-containing ingredients, but the fast pace of the restaurant and teenage/low skill workers means that it is unlikely that proper care will be taken to minimize CC risk. The same is true of most fast food restaurants in any country, unfortunately. Starbucks in Canada reliably carries pre-packaged food items that are gluten-free. Examples: marshmallow bar (rice cripsie knock-off), potato chips, apple chips, various bars, knock-off Reese's Pieces, packaged cheese. Chipotle and Mucho Burrito are ok, but be sure to tell workers that you are celiac so that they change gloves and get fresh tubs from the back to prepare your burrito bowl. New York Fries and Smoke's Poutine have dedicated fryers, so you can get fries there. For Smoke's, they have a gluten-free gravy, but it is not guaranteed to be celiac safe due to shared equipment. Though most of their toppings are naturally gluten-free, I would ask them to get new tubs from the back to prepare your order just in case. To be quite honest, if you are newly diagnosed I would not recommend eating out until you are healed and have a good handle on how you react to being glutened. As much as it sucks, prep your own food at home and bring it with you in a container.
  13. 1 point
    Fbmb, I think because you caught your celiac disease so early (relatively speaking) eating gluten free mitigates most of the future risk of developing other AI diseases. Celiac.org has a nice article on the relative risk of developing other AI disease when you are an un-diagnosed celiac. https://celiac.org/celiac-disease/understanding-celiac-disease-2/celiac-disease-and-comorbid-conditions/22514-2/ quoting "For people with celiac disease, the later the age of diagnosis, the greater the chance of developing another autoimmune disorder." they have a nice chart measuring relative risk which presumably as you noted goes down when you get your celiac diagnosis and begin eating gluten free. Age of Diagnosis Chance of Developing Another Autoimmune Disorder 2-4 10.5% 4 – 12 16.7% 12 – 20 27% Over 20 34 I hope this is helpful. Posterboy,
  14. 1 point
    So, this whole article is not for the people on this site. Would we allow people to post a gluteny bread recipe and say "And, of course, for diets of medical necessity (such as gluten-free eating for someone with celiac disease), this recipe unfortunately isn’t an option."? Or tell us about a great new Oreo flavor they love and say "And, of course, for diets of medical necessity (such as gluten-free eating for someone with celiac disease), these cookies unfortunately aren't an option."? Of course not because those people are obviously spammers or trolls.
  15. 1 point
    If the endoscope is done right in the hospital there is no trauma what so ever, you do not even notice they did a biopsy. You go in they put you on a IV (this might scare your kid) then when you go in they inject this white stuff into the IV and you get the best sleep of your life, and wake up with everything done with complete loss that time even passed and feel oddly refreshed....I swear less then a hour under on that feels more refreshing then a full night in my bed. THE WORST part about it will the the prep....they require you to take either 4pills of laxative and a full 8oz container of miralax mixed with 32-64oz oz of Gatorade or a full bottle of magnesium citrate and the miralax Gatorade mix....basically you have to be stuck on the toilet as your bowls empty the day before and not eat anything just liquids up to 2 days prior and the day of. Your child will never trust Gatorade again..... Once the testing is done come back here, if positive you can get pointers on cleaning out the house and making it safe for your child. You should also test any other direct blood relatives as this is genetic. Undiagnosed and untreated can lead to other AI disease, Nutrient deficiency related disorders, cancer, lymphoma, or eventual rupturing of the intestines or colon. Kids lucky early diagnosis means he can heal and get back to a normal life sooner....just has to take certain precautions with always bringing his own food and never eating what he is given by others.
  16. 1 point
    OK, this is what I know...... Stress can & does exacerbate many if not all skin issues & that covers the gamut from acne to hives to eczema to dh. I think climate could have an effect, sure. I know with my dh, when it rained or got real humid, the dh would itch a lot more & seemed to be more bothersome. BUT I have heard (not had personal experience) people with other skin conditions say humidity really makes things worse for them. I have also had people say that really dry air does bad stuff to their skin issues (people who live in places like AZ). Also if I got sweaty, my dh would be a pita. Yes, mostly bilateral/some unilateral happens with dh. I will also say that I have read medical texts that say eczema can present bilaterally too. 60% of those with dh test negative on the celiac blood panel. If you want to get a dh biopsy then the same rules apply as do for a celiac serum panel & that is you must have been eating gluten each & every day for the prior 12 weeks. A dh biopsy is taken ADJACENT to an active lesion. It is NOT taken ON a lesion. They take it on a lesion & the pathology is going to say arthropods or some such nonsense. The patterning the pathologist is looking for with dh is destroyed by the celiac antibodies themselves at the site of the lesion. This is why the biopsy is taken on clear skin adjacent to an active lesion. Also the pattern is easily destroyed by scratching so if you want to go get a biopsy then don't you dare scratch! Nearly impossible to do. What I tell people is to put a bandaid & over that, some really thick multiple layers of gauze padding. You go to scratch & you encounter that padding & it triggers you to be aware & not scratch.
  17. 1 point
    I know this is a very old thread but I believe I got glutened about 5 days ago and this very thing is happening to me! After the worse of the pain subsided a ton a mucus like stuff stared shooting out of my bum when I pooped of passed gas. Did you find anything to help this? and from your experience does this go away after you are completely healed? Thanks!
  18. 1 point
    .....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date? Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it. I swear I know your right now suffering from defenicey mental issues and anxiety, but the s$#& goes away after some healing......honestly people like and you instances like this are why I think a celiac halfway house needs to exist......rant over. Please just, step back look at our advice and change everything over to gluten-free, social isolation...gluten not so much try being allergic to corn and olives I get bloody reactions from shaking peoples hands, or putting my arm on a table to learn some kid spilled a soda with corn syrup on it that causes a rash sometimes if they have stuff I am allergic to on their hands, your damn lucky. SO fix it now or you will regret it when you get worse issues and allergies and truly have to live in a bubble or die in a bed withering in pain.
  19. 1 point
    Yup that form scared the **** out of me even though I had an experienced doctor performing it. Being in a hospital operating theatre is also an experience I don't want to revisit in a hurry. Tbh the formal diagnosis doesn't really change much, in the UK it used to be a way to get discounted food but that's all gone now so apart from confirming what you already suspect there's not much to be gained from my experience anyway. Your English is fine, had you not mentioned it's not your native language I'd never have guessed Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety
  20. 1 point
    I am looking for a group of tweens/teens with Celiac for my daughter to join. She is currently 11 yo and diagnosed with Celiac Disease 6 months ago. She is responding very well to the gluten-free lifestyle, but social situations are challenging. It would be terrific for her to have a group of people her age to share experiences, stories and gluten-free-strategies. We live in the Atlanta area.
  21. 1 point
    Thank you all for your advice and support. I came across this thread in search for help after a gluten exposure. I got one of the contaminated Cheerios boxes and am fighting depression among other fun symptoms now. It is a huge relief to know that this reaction is not uncommon. I'll stick it out and follow your advice! Thank you for being such a supportive community!
  22. 1 point
    I was asked to add this additional info about having a rash and having a gluten issue. These are my personal observations based on my readings and experience. 1) If your rash responds to gluten, it is a gluten-related rash. 2) You can try to biopsy it, but a negative result does not mean it isn't DH or a gluten related rash. 3) Most gluten rashes have a related component: salicylates, amines, iodine, msg's, etc. 4) A gluten rash can pop up at any time. 5) Gluten rashes are trending on this board to being the FIRST sign or a LATTER sign (or both). 6) You can have more than one type gluten related rash (judging by the varying dx's on the board). 7) DH does "morph" over time. I saw it , as have many others, and this makes it very hard to dx.
  23. 1 point
    Dear Mrs. Parsons, Thank you for your interest in DOLE
  24. 1 point
    Just the very fact of your diagnosis and quitting eating gluten has increased your longevity odds immensely I really don't think you need fear an imminent demise. We eat more healthily than the rest of the population and may well outlast them all.
  25. 1 point
    Sorry, but I have to disagree here. If it is processed on the same equipment with wheat, then it most likely has wheat in it. Have you ever eaten something that did not have gluten in it but was process on equipment with wheat? I have and the results were pretty serious. Cross contamination is serious and should not be underestimated. I still shop at Trader Joes, I just want those of us who cannot eat wheat or gluten to be awawre that the label on the front may have been placed there by someone who does not fully understand celiac sprue disease and gluten intollerance. If something is processed on equipment with wheat, then we cannot eat it.