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  1. 2 points
    I appreciate you taking a stand on being safer in the kitchen. I have celiac and it seems almost every time we eat out I have a reaction no matter how many questions we ask or how specific we are. symptoms vary from severe migraines to joint pain that could be equivilent to being hit by a truck not to mention brain fog, vertigo, vomiting, and not being able to go #2 for 5 to 7 days from the inflammation. needless to say when we go out to eat I suffer panic attacks and anxiety. Gluten intolerance is not just a myth it's a nightmare!
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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!
  8. 1 point
    Ron, just to add to the content in case it helps. I've been gluten free for 25 years (since the time I was diagnosed) and still get DH. I used to go years and years between outbreaks, but the latest was just a year apart. I've learned from this forum that picking up even tiny amounts of gluten can result in antibodies being released but lying dormant, only to be triggered at some point, and producing the rash from hell. I'm really careful, but I know sometimes trace amounts sneak in. Stress is a big trigger for me, I think. Some people respond well to things like lidocaine products or topical steroids. I've tried all of that, including steroid injections, and they didn't work for me at all. What has helped me tremendously, is taking quercetin at the first sign of the rash (the tingling pain before it starts if possible), and taking 10 mg of Doxepin at night. This currently makes it about 90% better, and I'm hoping it continues to work. Topically, I haven't found anything that works very well. I do sit in a tepid bath with Epsom salt and 10 drops of tea tree oil, which provides temporary relief. I also moisturize with coconut oil and a tiny bit of tea tree oil. When I was covered with the rash and not sleeping at night, cold towels on top of me eased it enough so I could sleep for a few hours. Before getting diagnosed my allergy tests all came back negative. I had gone off of gluten already and had just had a steroid injection, which would have compromised accuracy. In addition, one of my lesions was biopsied - not the area near the lesion. I finally was referred to an allergist, who diagnosed me based on the intensity of the rash, and my history. I've learned about how to live with this condition from these forums, and I'm so grateful for that. Good luck!
  9. 1 point
    I honestly do not know how often false positives occur. It was good that despite your low result, your GI moved forward with an endoscopy. It is so hard waiting for results! Keep us posted.
  10. 1 point
    Wow! I think your persistence and research has paid off! Nothing like following a mother’s instincts. Similar things occurred with my niece who actually does have Crohn’s (celiac disease firmly ruled out at this time), which was only discovered with a pill camera by her fourth GI (first three were PED GIs and she literally aged out. Yes, it took years to get that diagnosis 🙁). (I am just repeating this for future readers — not eveyone presents with classic symptoms). The Lialda probably did help her celiac disease. Anything to reduce inflammation can help, I would imagine (I am not a doctor). But if it is truly celiac disease, the gluten-free diet (unless you are dealing with refractory celiac disease) is the treatment. Have those numbers (gliadin antibodies) come down (I know you said she has gained weight and improved in other areas)? Getting off medications would be the goal for ANY person. You have to weigh the long term side effects vs. the benefits. Most often, we know that the medications can help those with IBD (Ulcerative Colitis and Crohn’s). It sounds like the 3rd GI is on the right path. If so, I am happy for your daughter and you! I also understand how other IBD parents feel too. Their kids may not be as fortunate as your daughter. This is a bit off topic from your personal discussion..... Let’s say that even if she did not have celiac disease, following a gluten free diet (or the AIP diet which is more restrictive) could be beneficial. That react small study out of Scripps showed a 70% remission rate with IBD patients (though all but one stayed on their IBD meds). Those results are amazing and can show just how powerful a diet can contribute to good health.
  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
    Before diagnosis I used to get extreme brain fog with gluten, and my mind would loop, and not do things I wanted it to, thoughts would not move, I could not do something knowing I should be able to. This led to confusion and EXTREME bouts of anger out of the frustration sometimes punching walls or banging my head on the wall to make it work (attempt) Called it hyde mode, was scary as all hell when your own mind and body turn on you. Gluten ataxia look it up was my symptom, it can be made worse with this disease if you are not absorbing enough B-vitamins, d, magnesium...look up the deficiency symptoms for these and see if it raises any flags.
  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
    Hello, I am Dwayne (celiac syndrome 1957) 61 years old, 150 pounds, 6 foot tall. I recently received four emergency heart stents to releive a 100% heart blockage during a heart attack. I had no idea I had any heart problem or even that I was having a heart attack because I thought it was probably normal refractory celiac pain. I had a gluten exposure in the hospital and a celiac attack in the ICU. The Celiac attack was as painful as the full blown 100% blockage, four stent last minute save heart attack. I survived with no heart damage. Many have asked why they do not hear about celiacs my age. Most celiacs who are older than me are late age diagnosis. I was celiac syndrome (critical severe) before age one. Many child celiacs pre-1950's did not survive. Dorthy Anderson Diet saved many celiac syndrome babies in the 1950's like me. Dorthy Anderson discovered cystic fibrosis and saved many babies when she discovered cf in many (thought to be celiac) child celiac autopsies that some turned out to be cf instead. Bananas for intestinal balance, chocolate for phenol to replace intestinal lining. gota jump Dwayne (celiac) https://cfmedicine.nlm.nih.gov/physicians/biography_8.htm Dr. Dorthy Hansine Anderson Andersen's duties included performing autopsies. While conducting an autopsy on a child who had presented the clinical picture of celiac disease¿an illness caused by an intestinal hypersensitivity to gluten that inhibits digestion¿Andersen noticed a lesion in the pancreas. Following an extensive search of the autopsy records and related medical literature, she discovered a clear, though previously unrecognized, disease pattern. She called it cystic fibrosis. But Andersen did not think of herself solely as a pathologist and continued to work on diagnosing this new disease in living patients. Andersen and her research team made numerous discoveries that led to a simple diagnostic test for cystic fibrosis, one that is still in use today.
  15. 1 point
    None of this indicates testing for celiac disease. The wheat and milk could be IgE allergies, but I would go to an allergist for confirmation as blood tests for allergies are not that accurate (like 50% accuracy). If you have a celiac disease antibody test result just type it. In any case, I would consider getting a second opinion. Bring all the medical records and lab results to that consultation to save time and money.
  16. 1 point
    I don't have MS but I have a similar disease. I know it's really frightening to suddenly have these sort of symptoms but the good thing is is that with MS if you find you have it or something similar, there are a lot more options and research available than what once was. So even if you have it, it dosn't mean that you have to live a life not worth living. There are options! Especially if you are willing to change up your lifestyle habits. that being said, have you gone over your test results yourself? Perhaps you are having a sneakier form of vitamin deficiency. Specifically with B12. I hope you are able to find a good resolution for this!
  17. 1 point
    If food doesn't help quick enough I take Alka-Selzer (aspirin and bicarbonate) and that almost always works. Zantac and Pepcid are H pump inhibitors designed to reduce your stomach acid long term, which if not necessary will interfere with your digestive process leading to more malnutrition. And down the rabbit hole you go. They have recently been linked to kidney failure as an underreported side effect. Lawsuits have been initiated.
  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 have prostate problems from going through bottle after bottle of Benadryl since the mid-1990's. It wasn't until December 2014 that I found out I have Celiac's Disease. Now, I'm wondering if there's anything stronger I can take so I can go get the proper testing to verify whether it is Celiac's or non-Celiac's gluten sesitivity...but I do know for sure that I'm highly allergic to gluten. My skin from the top of my head to the tops/backs of my hands, and down to just under my pecks are like leather. I've been off gluten completely since December and even the smallest trace amount of gluten causes an extreme reaction. I've talked to others with Celiac's and it seems that a skin-itch reaction is actually less common than symptoms like bloating, weight gain, etc. If I accidentally ingest gluten, I can expect about 3 days of level 10 itching where I can barely function, then about 2 weeks of like level 8-9 itching...now, a few weeks since my last 'accident' I'd say my level of itchiness is about 7 still, on average, and it peaks up to 8-9 about every 3 nights. When it peaks I don't get any sleep, I just scratch till I bleed - refusing to take Benedryl more than once or twice a day. ...So, if anyone has advise on how to go about preparing for that testing, I'm all ears... The thought of eating gluten, on purpose, for 6 weeks is kinda like volunteering to spend 6 weeks in Hell...the religious one
  21. 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.
  22. 1 point
    Wow. I take Levoxyl 137 mcg - and I still have my thyroid! I spent several years asking to get my thyroid checked because I was rashy, exhausted and gaining weight regardless. NOBODY would run any kind of test - they (several doctors, OB/GYN, GP) just told me I had "elbow disease" - which is a euphemism for overeating. If anything, I've always eaten about half what other people eat and most people comment on the small amounts I eat. So, I finally went to one of those "mall health fairs" and spent $35.00 to get a blood test, which showed, lo and behold! My TSH was roughly 3.5. I then found an endo, who immediately said, basically, "Of course you need to be on meds, and we need to get a sonogram," etc., which made me feel better - until the jerk decided the other reason why I felt bad was because I was "depressed" and gave me samples and a 'scrip for Effexor. Which I refused to take until I did some research and then I REALLY refused to take it. C'mon - something that usually requires liquid Prozac to wean you off of it? NO THANKS! BUT, I've always been on Mylan - when the company that makes it is in West Virginia, and you LIVE in West Virginia, that's what you get
  23. 1 point
    Hi there, Thanks for your feedback. This notion that soybean oil is tolerable to those with soy allergies is very recent, within the past year. This is a frightening "truth" sadly accepted by the medical community because that means pharmaceutical drugs could be made with soybean oil with the thought that it will be tolerable and deemed not to be allergenic. I had an anaphalactic attack because I was taking medication derived from soybean oil, and when I told the pharmacist that that is the reason, that I am allergic to soy including soy oil, he basically told me nonsense. Needless to say, I do not frequent his pharmacy anymore... Interestingly enough, because I have a soy allergy, I had received a letter from a doctor who wanted to run tests for the FDA to see what was the lowest possible amount of soy I could tolerate and not react. This seemed very strange and very wrong to me. I replied and said that there was no way I could participate, less being literally crippled for a week and suffer from possible anaphalctic attacks - that I simpily cannot tolerate any miniscuple amount of soy whatsoever. We live in a very strange country. Whenever I go to Europe, my problems disappear. I don't think they use soy for anything over there, and are more aware of food issues and health. I think anything processed is more than likely to contaminated with soy. It's cheap and readily available. Food products, such as raisins, etc, can be coated with soy oil and not necessarily be included in the list of ingredients. I can't even tolerate regular toothpastes - I have to brush with baking soda. It's in every little thing. When I avoid soy for a loooong time, I seem to be able to tolerate it later on. Now I know better. I simpily cannot expose myself to soy ever again, or else move to Europe - ha, ha, ha. I think the soy destroys the lining in the stomache and makes me intolerable to other foods. Anyways, thanks for getting back to me - glad in a way that I'm not the only one suffering these weird going-ons.
  24. 1 point
    Does anyone have any restaurant recommendations for the Cedar Point/Sandusky OH area?
  25. 1 point
    Both light and regular Hawaiian Punch are gluten-free--all flavors.