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Showing content with the highest reputation since 03/20/2018 in all areas

  1. 5 points
    I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and organize the material. I think you need to ask people to give specific ages and dates of when their celiac disease and the other autoimmune conditions were diagnosed. Ask them how much time expired between the first perceived onset of symptoms and the official dx of both celiac disease and other other disorders. Ask them how they were diagnosed. Ask them what symptoms led them to seek medical intervention. Have some way of distinguishing between official and unofficial diagnosis of celiac disease and the other associated autoimmune conditions they. If you visit celiac disease forums very long you will discover that people blame everything from hang nails to lumbago on celiac disease without any evidence of association. Ask questions about their diligence in avoiding gluten. You could also provide space for narrative in your questionnaire. Just some of my own thoughts here. Hope this is helpful.
  2. 4 points
    Celiac.com 07/03/2015 - For people with celiac disease or gluten intolerance, accidentally eating gluten can have numerous undesirable consequences. Symptoms of gluten-exposure among people with celiac disease can vary, but main problems and complaints include: upset stomach, stomach pain, inflammation, diarrhea, gas, bloating, indigestion, heart burn, skin rash or breakouts, and nerve and arthritis pain, among others. If you're one of these people, then you likely work pretty hard to make sure everything you eat is gluten-free. But what can you do if you accidentally eat gluten? Officially, beyond simply waiting it out, there is no clinically accepted treatment for people with celiac disease or gluten sensitivity who accidentally eat gluten. However, there are things that many people claim will reduce the suffering and promote healing when this happens. Here are the best home remedies for accidental gluten ingestion, as submitted by readers to our gluten-free forum. The main goal is to reduce or eliminate the worst immediate symptoms, including pain, inflammation, diarrhea, gas and or bloating, etc. The secondary goal is to rebuild gut health. So what works? Or, what do people say works for them? The remedies listed below are not ranked in any particular order of importance or efficacy. Fasting—Recent studies indicate that fasting for a couple of days can help to reset the immune system, which might be beneficial for those suffering from an adverse gluten reaction. Be sure to check with a doctor before fasting, just to be safe. Digestive Enzymes-- For many people, digestive enzymes seem to help the bloating. Many people claim that such enzymes help provide relief, especially against small amounts of gluten. Two such products are Eater's Digest by Traditional Medicinals, and Gluten Defense digestive enzymes. Green tea or peppermint tea. Many people have reported that green tea is also helpful. Peppermint tea is said to promote muscle relaxation, and can help for gassy stomach issues. Strong gluten-free peppermints will work in a pinch. Imodium seems to help some people control associated diarrhea. If you have diarrhea, be sure to drink water with electrolytes to help replace lost fluids. Pepto-Bismol—Some people take Pepto-Bismol to help relieve stomach upset. Marshmallow root can help to sooth stomach and gas pain. Antihistamines—Some people claim to find relief with antihistamines, such as Benedryl, Clatratin, or Zyrtec. Often these are used in combination with other remedies Probiotics—Many people find probiotics to be helpful, especially as part of a general gut maintenance program. Probiotics are generally more helpful in advance of accidental gluten exposure, but many people take them after exposure. Either way, it certainly can't hurt. Broth—Many people with celiac disease, gut and/or nutritional issues turn to broth for help in building gut health and proper nutrition. Good old fashioned beef, chicken or fish broth can be a beneficial part of a healthy gut regimen. Broth also has many health properties beyond gut healing. Tummy Rescue Smoothie: This recipe was developed by a celiac.com reader in response to his own "gluten emergency.” The healing properties of each ingredient are also listed. Puree in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea. Tummy Rescue Smoothie: 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼-½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. Longer-term strategies include rebuilding intestinal health with an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics, including acidophilus for about a week to get intestinal flora back in order. This list is not intended to be authoritative or comprehensive. Nor is it intended as medical advice, or as a substitute for medical advice. As with any health remedy, do your research and make the choices that are right for you. If you have any thoughts or insights on how best to treat accidental gluten ingestion for people with celiac disease or gluten intolerance, please share them in our comments section below.
  3. 4 points
    Joe, Your doctor can check you for vitamin deficiencies (lab test), but more importantly, you need to have a serious conversation with your doctor about your anxiety. It seems pretty high from what you described. You just might need medication for a while and you might see some benefits from taking it. Talk to your doctor. In the meantime, you can consider taking a multi-vitamin and keep eating foods like meat, fish, eggs, veggies, nuts, rice, and fruit. I do not know how bad your symptoms are from celiac disease, but for example, if you have diarrhea, it is NORMAL to be anxious about where bathrooms are. We get that! Do not expect to heal in just three weeks. It takes time. You reported that it took two years for all this to develop, so it will take a while to heal. It is hard to be patient, I know. Honestly, you should talk to a doctor. He/She might refer you to a psychologist who is trained to get you through this rough patch. Getting a celiac disease diagnosis is hard and it is a lot to process. If you can, sit down and have a serious conversation with your parents, school counselor, or another trusted adult. Ask them for help.
  4. 4 points
    I just don’t eat food that either my husband or I have prepared. People think I’m crazy but I’m the one who pays the price. Nothing is worth getting glutened....nothing. I travel with my own cooking equipment down to a sponge. I don’t eat out unless the restaurant has a separate prep kitchen. I’m 10 yrs into this and every time I get glutened my reaction is astronomically worse. Actually not sure I will survive the next.
  5. 4 points
    amen to this - show of hands of who found this out the HARD WAY...🙄 this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody: suffer! hahahahaaa) and outlawed those crescent rolls. nobody died! everybody said how delicious everything was. even for snacks, they make gluten-free pretzel crisps i used for crackers, and those milton crackers are the bomb dot com. i used to make a 'gluten corner' and then freak out trying to keep everything safe. which, i have had success with if i lay out the rules: i keep the main part of the meal which is gluten-free on one side of the kitchen, the gluten can be in the dining room or the other side of the kitchen with PHYSICAL DISTANCE between them. i use paper plates or bowls, and people must get a new plate or bowl if they want seconds, say, if they're eating gluten crackers with their chili, if they want that second bowl, i don't need the ladle hitting a contaminated bowl then ending up back in the chili. also, yes, what the other poster said: you have to be firm. it's not mean. it's reality. we were out to dinner and the server went to box up my leftover appetizer. she says 'i can put extra bread in there with it if you want' i thought she was kidding until she waited for my answer. i grabbed the dish back and said: NO. YOU BRING BOX. I PUT IN BOX. i still tipped her well. people just don't know and if they don't have to, they don't remember.
  6. 4 points
    Food prepared in other people's gluten kitchens is NOT SAFE if you have Celiac's. Salads or veggies, any of that, can all be contaminated from their counter, their utensils, wooden spoons, non-stick cooking pans, their hands, any ingredients they used in make gluten containing food. If they taste what they have made and use the spoon again...I know...but people do that, their gluten contaminated mouth would contaminate the food. If they do not have Celiac's they are not even close to being aware of the care that would need to be taken to make that food safe for you. You seriously have to just tell them not to bring anything unless it's raw whole food and you will cut it up in your safe kitchen.
  7. 4 points
    My house is gluten free. I do not allow any gluten inside — ever. I do allow it when we are having a party outside and I set up an extra table to hold those foods to prevent cross contamination. When that type of party occurs, I toss or send home ALL the food with non-celiacs. When I invite people over and they ask what they can bring, I usually suggest gluten-free packaged items like chips or ice cream. My family or friends will offer to bring veggies and fruit that we can wash, cut and serve from my kitchen. Everyone is really nice about it. Sometimes, a new friend shows up with a pie. I usually thank them and set it aside. I give the pie away later to neighbors or friends. I try to avoid making my new, uniformed guest feel uncomfortable. I need a place where I can feel safe and let down my guard.
  8. 4 points
    I disagree. I think you can manage or treat celiac disease with a gluten free diet. The article made a comparison of managing celiac disease like Type 2 Diabetes and Heart Disease which she says can not be managed on diet alone either. I strongly disagree with that! I have Type 2 Diabetes and have been managing with just diet alone for four years. No drugs necessary. Every drug has benefits and risks. For example, statins can lower cholesterol, but can cause muscle pain and Type 2 Diabetes. Go figure! If my pancreas craps out for good, I will take insulin, just like I take thyroid hormone replacement. These are not “drugs”. Beyond Celiac places a lot of emphasis on drug development. That is one of it’s main missions. Celiacs probably need drugs because people want an easy fix. It could make eating out easier and less risky, but I will prefer to my diet alone strategy. While true, many celiacs do get hidden exposures to gluten, Look at what most people are doing. Most refuse to improve their diets with nourishing whole food. Most continue to eat out. Most have substituted their old diet for the same processed foods diet (e.g. Cheetos, Milky Way Bars, and pizza). I get it. My first GI told me the bad news, but tried to soften it by telling me I could eat at Red Robin. New celiacs are not given much guidance and there are few dieticians who really understand the gluten free diet (not to mention that insurance may not cover it). My PCP has three celiacs. Two refuse to adhere to the diet. “It is too hard”, they tell her. I am the celiac who adheres to the diet. It works for me. Mostly whole foods, few grains, and I avoid processed foods. Sometimes, I feel like Ma Ingalls on the Praire cooking all my food. But the end result has been worth it. My last endoscopy revealed a healed gut. It also revealed autoimmune gastritis, but that seems to be in remission. I am running, cycling, and swimming. I might sign up for a Triathlon again. At my age, I can probably get on the podium due to less competition! ? So, take heart. It is possible to heal from celiac disease. I am living proof!
  9. 4 points
    PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia.
  10. 4 points
    Obviously, you have a lot more issues with him than just this. I feel bad for the kids as an early diagnosis could be so helpful to their current and future health. If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life, I don't care what my husband thinks. You can eat gluten-free without buying expensive gluten-free packaged products. Meat, beans, veggies, fruit, dairy , eggs, rice, Chex cereals, plain potato chips, etc are al naturally gluten-free. It might take a change in what you fix, but, except for gluten-free pasta, my hub and I eat mostly like that. I say potato chips and Chex because you can make some great chicken nugget things with them. you are right that eating gluten-free usually makes the Celiac tests negative. But if you can't or won't test your kids, maybe it is best to make them gluten-free to stop some of the damage. In a few years, as adults, they can get tested . There are tests for Celiac being developed that don't require eating gluten or much gluten.
  11. 4 points
    Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it helps others ignore it too. Dazzle them with your wit and personality because that’s what makes you awesome, not what you can or can’t eat. Make your family remember how lucky they are to have you. Don’t fight over food unless they are actively causing you harm through cross contamination. Do what needs to be done to keep healthy without apology because you aren’t affecting them by watching what you eat and bringing your own food.
  12. 3 points
    Most members who are no longer active on the forum and leading normal, healthy lives. The few active old timers are here to help new members. Not everyone remains ill. Think about that.
  13. 3 points
    Celiac.com 02/20/2019 - Pharmaceutical company ImmusanT is developing a celiac disease vaccine called Nexvax 2. Many vaccines provide long-term or permanent protection against disease after just one, or several doses. Because celiac disease is not caused by a virus, like polio, but is a response to the presence of an antigen (similar to an allergen that triggers an allergy), the approach to creating a vaccine like Nexvax 2 is different and, in some ways, easier, than creating a traditional vaccine, like the HPV vaccine. Nexvax 2 is a vaccine in much the same way that allergy shots are, but not in the way the polio vaccine is. Celiac Vaccine is Similar to Allergy Shots Unlike traditional vaccines, such as the polio vaccine, or the measles vaccine, Nexvax 2 does not inject a small dose of dead or weakened virus, or any virus fragment, into the patient to achieve disease immunity. Allergy shots work by desensitizing the body’s reaction by strengthening the immune system, thereby reducing or eliminating reactions to certain allergens. Nexvax 2 would work in a similar manner to allergy shots. It would build tolerance levels until there was little or no immune reaction to gluten exposure. Anyone who’s ever had allergy shots knows that their effectiveness can range from person to person. Some people get minimal relief, though most see good to excellent results. Many experience tremendous relief, and see their symptoms disappear. Nexvax 2 Faces Easier Path to Approval Because Nexvax 2 works less like a traditional vaccine, and more like allergy therapy, the process for testing and approval is potentially easier and shorter; several years, rather than a decade or more. The hope is that, once treated with Nexvax 2, “the immune system, now seeing these fragments of gluten in a different way, might learn to tolerate gluten," said Benjamin Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University. Certainly, the ability to reduce or neutralize the body’s reaction to gluten in people with celiac disease would be a major breakthrough in the treatment of celiac disease. Benefits for celiac patients could include a reduction in severity of gluten contamination symptoms, and potentially an elimination of symptoms entirely. Nexvax 2 treatment, if successful, could allow some people with celiac disease to safely consume wheat. That is potentially huge news. Phase two clinical trials of the Nexvax 2 are slated for completion by the end of 2019. Read more: Promising Celiac Vaccine Nexvax 2 Begins Phase Two Trials
  14. 3 points
    Celiac.com 02/27/2019 - Celiac disease is an autoimmune condition with numerous symptoms, and associated conditions. People with celiac disease often have gastrointestinal symptoms, including upset stomach, abdominal pain, gas, bloating, indigestion, and diarrhea. Some suffer from many of these on a regular basis. What are the most common symptoms? What are common associated conditions? However, many people show few or no symptoms. No single set of signs or symptoms is typical for everyone with celiac disease. Signs and symptoms almost always vary from person to person. So, while many people show classic symptoms, significant numbers of adults with celiac disease present few or no symptoms, including no gastrointestinal symptoms, when diagnosed. Symptoms Can Vary Between Children and Adults The signs and symptoms of celiac disease can vary greatly and are different in children and adults. The most common signs for adults are diarrhea, fatigue and weight loss. Adults may also experience bloating and gas, abdominal pain, nausea, constipation, and vomiting. Symptoms in Children Children under 2 years old celiac symptoms often include vomiting, chronic diarrhea, failure to thrive, muscle wasting, poor appetite, and swollen belly. Older children may experience diarrhea, constipation, weight loss, irritability, short stature, delayed puberty, and neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination and seizures Associated Systemic Symptoms Certain associated conditions serve as potential systemic symptoms of celiac disease, including persistent anemia, chronic fatigue, weight loss, obesity, osteopenia, osteoporosis and fractures, amenorrhea, infertility, muscle cramps, and tooth enamel defects. Vague Symptoms Can Delay Celiac Diagnosis It is not uncommon for symptoms of celiac disease to be vague or confusing. Vague or confusing symptoms can include dental enamel defects, bone disorders like osteoporosis, depression, irritability, joint pain, mouth sores, muscle cramps, skin rash, stomach discomfort, and even neuropathy, often experienced as tingling in the legs and feet. To make matters more challenging, celiac symptoms can also mimic symptoms of other diseases, such as anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions. Vague or confusing symptoms can delay celiac disease diagnosis. Signs and Symptoms of Celiac Disease Abdominal cramps, gas and bloating Acne Anemia Borborygmi—stomach rumbling Coetaneous bleeding Delayed puberty Dental enamel defects Diarrhea Dry skin Easy bruising Epistaxis—nose bleeds Eczema Failure to thrive or short stature Fatigue or general weakness Flatulence Fluid retention Foul-smelling or grayish stools that are often fatty or oily Gastrointestinal symptoms Gastrointestinal hemorrhage General malaise, feeling unwell Hematuria—red urine Hypocalcaemia/hypomagnesaemia Infertility, or recurrent miscarriage Iron deficiency anemia Joint Pain Lymphocytic gastritis Malabsorption Malnutrition Muscle weakness Muscle wasting Nausea Obesity/Overweight Osteoporosis Pallor—pale, unhealthy appearance Panic Attacks Peripheral neuropathy Psychiatric disorders such as anxiety and depression Skin Problems—acne, eczema, DH, dry skin Stunted growth in children Underweight Vertigo Vitamin B12 deficiency Vitamin D deficiency Vitamin K deficiency Vomiting Voracious appetite Weight loss Conditions Associated with Celiac Disease People with one or more of these associated conditions are at higher risk for celiac disease: Addison's Disease Anemia Anorexia Nervosa, Bulimia Arthritis Asthma Ataxia, Nerve Disease, Neuropathy, Brain Damage Attention Deficit Disorder Autism Bacterial Overgrowth Cancer, Lymphoma Candida Albicans Canker Sores—Aphthous Stomatitis) Casein / Cows Milk Intolerance Chronic Fatigue Syndrome Cognitive Impairment Crohn's Disease Depression Dermatitis Herpetiformis Diabetes Down Syndrome Dyspepsia, Acid Reflux Eczema Epilepsy Eye Problems, Cataract Fertility, Pregnancy, Miscarriage Fibromyalgia Flatulence—Gas Gall Bladder Disease Gastrointestinal Bleeding Geographic Tongue—Glossitis Growth Hormone Deficiency Hashimoto’s Thyroiditis Heart Failure Infertility, Impotency Inflammatory Bowel Disease Intestinal Permeability Irritable Bowel Syndrome Kidney Disease Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.) Low bone density Lupus Malnutrition, Body Mass Index Migraine Headaches Multiple Sclerosis Myasthenia Gravis Celiac Disease Obesity, Overweight Osteopenia, osteoporosis, osteomalacia Psoriasis Refractory Celiac Disease & Collagenous Sprue Sarcoidosis Scleroderma Schizophrenia / Mental Problems Sepsis Sjogrens Syndrome Sleep Disorders Thrombocytopenic Purpura Thyroid & Pancreatic Disorders Tuberculosis Top Scientific References on Celiac Symptoms University of Chicago Celiac Disease Center Mayo Clinic Celiac Disease Center
  15. 3 points
    Hi Sueps, That's rough stuff for sure. I had a similar thing with a long recovery. 5 years and still didn't feel very well. It seems there are a few possibilities. You are eating something that your body reacts to. You have another condition going on. Since the food issues is something we can control and change, I'd like to think that's the cause. I don't know how you did your exclusion diet, but there is a potential gotcha depending on method. Imagine a person is reacting to carrots. They eliminate carrots from their diet for a couple months and feel better. However, imagine that some person is now also reacting to peppers. And they do the same carrot elimination diet. They haven't eliminated peppers though, only carrots. So they are carrot free for a couple months but they still feel crappy because they are continuing to eat peppers. If they had eliminated both of the problem foods at the same time, they would have felt better. The way around this multiple food sensitivity problem is to do an elimination diet differently. Instead of eliminating just a single food, instead eliminate most foods and slowly build up by slowly adding one food at a time. It's a slow process but effective.
  16. 3 points
    I don't think this has been mentioned yet, but I asked a panelist at a Celiac conference about the changing of reactions in Celiac disease over time and he explained that it is actually like a roller coaster. Just like those of us who have psoriasis, eczema, etc--sometimes these go into remission and we don't react to things the way we did at other times. Then for some inexplicable reason, we are triggered and react again. The problem is that with Celiac we cannot visually see that this AI disease has been triggered or has gone into remission. So, if you cheat and don't see a reaction, someone may be tempted to question their diagnosis. It could be that your immune response is not being triggered at that moment. But then, maybe it will get triggered if you push your luck, and you will suffer silently as the damage is done on the inside before you finally start showing the obvious symptoms again. To me, lifelong adherence to a gluten-free diet (without knowingly cheating) is a no-brainer. It's the most important thing you can do for yourself.
  17. 3 points
    I was diagnosed on the 11th, so there goes the first week of forever. I am very emotionally raw, but I found something that brightened my day yesterday. There is a new gluten-free brew pub that opened Dec. 7th in Tulsa Oklahoma. It is called New Era Fine Fermentations. The brew master is celiac and there are no gluten containing ingredients in any of the food or drinks. It made me happy. I used to be a beer snob, until I started hating the way it made me feel the next day and greatly reduced my drinking. I need to make a trip up there to offer my support of these types of places. I mean they have fish and chips on the menu, how can I resist? I will report back once I have actually been there and let all know in case anyone is close to me. It gets good reviews on "Find me gluten-free".
  18. 3 points
    I am a little confused. So you went on the Fasano diet with your doctor’s approval to see if you could finally rid yourself of DH, right? It appears that the diet has been successful because your DH has resolved and now you want to experiment with alcohol. Chances are your gut has healed too. Usually DH appears much faster. I listen to those with DH because if they get glutened they can actually SEE it! Do you have any good guesses as to how gluten was getting into your diet before the Fasano diet? Or did you determine you were super sensitive and that 20 ppm was too much for you? Your response could help fellow DH sufferers. Back to alcohol. I personally would choose a potato vodka and squeeze fresh juice (e.g. an orange) into it. I did the Fasano diet too and it may or may not have healed my gut. No way to know for sure. It did not help my actual stomach because a repeat endoscopy revealed a healed small intestine but autoimmune gastritis. On the Fasano diet, I did consume coffee with cream. I did not drink Gatorade. I think the PED GIs allowed that because kids will drink it and it helps with electrolytes which can be good for active celiacs. The diet did let me debunk that old silly internet coffee cross reactor myth for sure!!!
  19. 3 points
    I was wondering the same thing today, but now that I think about it. It isn’t rude to want to be healthy. 😊 You can try a list with code friends or tell them to just bring themselves as you are looking forward to spending time. Or you can say please do not bring snacks as many of them affect your health, but tell them to bring wine or juice. I am struggling with ways to diplomatically tell people things without feeling badly or embarrassed. I think being direct eventually has to come with the territory of having this disease. I am looking forward to getting my self confidence back and being able to communicate a bit better when faced with these situations. All my best
  20. 3 points
    Hi Joe, Welcome to the forum! How long we take to feel better varies a lot. One of the most important things to help that healing is to keep 100% gluten-free. Or as close as we can manage. The immune reaction in celiac can take months to calm down. So any little ingestion of gluten can trigger a months long immune attack. Depression, anxiety etc are linked to celiac disease. Our bodies don't function well without the critical nutrients they need to operate and repair cells. That can affect hormones that affect our mood and also nerves that form our brain. Did you know your brain is mostly made of fat cells and nerve cells? Celiac damage can make it hard to absorb B-vitamins that are important for nerve health. That can affect our brain. Celiac can also reduce our ability to absorb fats. Your anxiety could very well be caused by celiac damage. And it could reverse or go away too. Just stick with the gluten-free diet carefully and be patient with your body. You may feel better not eating dairy for a few months. Celiac impairs our ability to digest dairy sugar (lactose).
  21. 3 points
    I've read this article my comment to Celiac.com when I sent a review of this article is that if this injection is successful, because gluten-free has become a huge money maker they are going to be up against big business, factories have been opened, specialty bakeries, etc etc and of course all the other gluten-free product makers they will fight it all the way, mainly because Hollywood put us in the spotlight with all,these stars etc going on a Gluten Free "Diet" they should,check out the calories etc in our diets they don't have a clue. I sincerely hope, but I've had it too long since 1989, and it probably won't work for me, but I do hope that they are allowed to market this injection at the end of (if successful) trials because we deserve to have some kind of "normal" back in our lives. It is a terribly restrictive disease most people refer to it as an allergy 🤦🏼‍♀️ if only it was.🙏🏽
  22. 3 points
    Gluten removed beers are not safe for celiacs. The testing does not work them properly so there is no way to tell. Stick to beers made not using gluten grains if you have celiac.
  23. 3 points
    Have they done a celiac panel on you? Also with the MRI were there any white spots that the neuro considered 'normal'? I ask that because your symptoms are much like mine before diagnosis and I had white spots on the MRI suggestive of MS but after a spinal tap ruled out MS my neurologist said they were normal 'lots of folks have them'. He didn't know they were diagnostic of gluten ataxia. I would suffer for a few more years before I was finally diagnosed celiac. If the doctors have done all testing for celiac then IMHO you should try the diet strictly for at least 6 months. In addition have they done testing for your B12 levels? If they have what were the results? They should be over 500. If you have had more than one test for B12 check the results and see if the levels have been dropping. Your body can stop being able to utilize B12 before the levels drop below normal levels. A sublingual B12 may be helpful with the tingling sensation and it is a water soluable vitamin so don't be disturbed by the high levels in the vitamin tablets as your body will excrete any excess. I hope you get some relief soon. Do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info on what you need to do to be as strict as possible. Do make sure that your doctors have finished all celiac related testing before starting the diet as being gluten free will cause a false negative on celiac testing. The gluten free diet will not impact testing for other disorders.
  24. 3 points
    It is an unpopular opinion, but I think in the balance of things that eating out at normal restaurants is something that should be avoided unless necessary (and it is rarely necessary if you have some forethought and mental/emotional flexibility). Fact is, most restaurants are not truly able to cater adequately to celiac customers - I've lived in with gluten-eating roommates, and I find it highly unlikely that your run-of-the-mill restaurant is going to come close to doing the things that I had to do to in that environment prevent myself from getting sick. I think sometimes people with celiac disease/allergies get stuck in the mental attitude of "I deserve" or "it's not fair," when it comes to eating out. Fact is, when you have a medical condition, you can't always expect to maintain the status quo and stay healthy. Your immune system and restaurant industry economics don't care about your personal justice - you need to look out for yourself, and be solely accountable for your health. Sorry if that sounds mean or harsh, but I think that's the sort of tough lovin' that some people need to hear. Bring you own food, pack snacks, shop at grocery stores when traveling. Use the Find Me Gluten-Free app to identify dedicated restaurants or restaurants that are highly vetted.
  25. 3 points
    IMHO it was likely the fish taco. For myself 3 days is the time to a gut reaction even though I get some discomfort in muscles and joints and a day of depression before the severe gut stuff shows up. Have you tried some liquid Pepto Bismal for the stomach pain? It usually gives me some pretty quick relief but don't know if it would help you.
  26. 3 points
    Part of the misunderstanding with Corona is that people will say that it's "made with corn". Yes, WITH CORN... as in barley and corn. Now onto my main concern... ***** "Gluten-removed" beers use a process that is often termed "enzymatic fining". It's a modern fining agent whose side-effect is that it "gobbles" gluten during the initial stages of production. This gives the yeast more direct access to the sugars in the grain... and therefore produce a more efficient brewing process. I've also read of brewers using it in the final stages just before bottling to further clarify and reduce any remaining gluten. I am a bartender, not a brewer. So I only know what I read. [For more info on enzymatic clarification, read here: http://www.dsm.com/markets/foodandbeverages/en_US/solutions/taste-appeal-indulgence/Brew_Gluten_free_beer.html] In the UK they are allowed to call the final product gluten-free provided the final product has been tested to below the correct parts-per-million. In the U.S., they are not permitted to term an item gluten-free if any of the ingredients contain gluten. (This difference in nomenclature is part of what is causing confusion in global chat.) Companies who make Gluten-Reduced (GR'd, for the sake of this post) beer are typically of the mindset that a beer brewed like beer will taste better than a beer brewed with adjuncts--the term used in the beer industry for alternative grains and fruit extracts. Most of the time, they are correct. But those companies often do not want to spend the time and money to have each batch tested to comply with strict "gluten-free" guidelines. And because they're not permitted to call it gluten-free anyway, many choose an un-regulated term to help those who are trying to reduce their gluten intake--which is great for them! However, for folks like you and me, this muddies the water in terms of how people understand what Celiac disease is all about. Additionally, many breweries whose beer *might* meet the criteria of parts-per-million to satisfy the Celiac community... don't want to have the "stigma" associated with a "gluten-free" (or similar) designation, as they feel it will harm their overall sales. If you've tasted many of the gluten-free beers on the market, you can't blame them for having this concern! (There is a major Philadelphia brewer whose flagship line of beer--except their wheat and saison and "Presidential series" are enzymatically fined. But the head brewer does not want to be associated with the watery, adjunct-laden messes like have been pumped out by brands like RedBridge and others. He does claim, however, that every time they DID test a batch of those beers for gluten, that they fell far below the U.S. standard of acceptable PPM--as in around 2 to 4 PPM.) Still, if breweries were to "gobble" their beers via enzymatic fining to fewer ppm of gluten than 20 AND have their batches tested, they would be able to have more customers who can enjoy GOOD BEER that very well MAY be safe for most (if not all) Celiacs. And if breweries who want to produce TRULY gluten-free beer would stop trying to only mimick mainstream beer styles (such as pilsners and lagers), they might also produce a better tasting product. ("Adjunct" grains tend to produce what are typically considered "off" sensations such as sour or bitter or funky... which are flavors that are highly prized in more boutique Belgian styles--styles that the gluten-free brewers have all but IGNORED.) Stone "Delicious IPA" is one example of GR'd beer that really hits the right mark in terms of body and flavor. But brews like RedBridge, New Planet Lager, and even Dogfish Head "Tw'easonAle" are never quite satisfying in the same way that traditionally brewed beer is. So that is why the "Gluten-Reduced" category forges ahead. ***** Also, to answer the other user above... the type of mint used in the modern Julep is typically known as Kentucky Mint. It has been bred to grow in high volume and with large, fragrant leaves... unlike the less hardy "fuzzy" mint my family grew when I was a kid.
  27. 3 points
    First you need to understand that when it comes to research & peer reviewed medical studies, dh is like the bastard stepchild of celiac. There haven't been enough studies on classical celiac; when it comes to dh, there have been precious few. We are lacking a ton of hard info. on it. For 7 years, I have been researching dh & I am a research freak. I have never found anything that explains why you can break out with dh, get it correctly biopsied & it comes up negative if you are gluten-free. Yes, the antibodies are there & that's why you break out -- why doesn't it show in a biopsy??? But I can tell you that happens ALL THE TIME. I can give you my thoughts & opinion based on my own experiences as well as those of people on this site for those 7 years combined with the scant amount of reliable studies out there. First, dh is crazy sensitive to the tiniest amount of gluten. You may have been getting low, low amounts of cc fro a long time but didn't know it b/c you didn't react. Did you know that most of those with dh have much fewer, milder GI symptoms that the classic celiac? Tis true. So I submit you were getting enough gluten cc to trigger the immune response which deposited the antibodies. Then it was just a matter of time. What kicks it off? Many things can, maybe a combo of several. Stress, illness, pregnancy, an accident, or a glutening. We don't know how long the antibodies can sit under the skin. I can tell you it can be years & years. Medical texts say up to 10 years & some say for as long as you live. Were those people being ultra careful not to get cc'd? We don't know b/c these reports are based on doctors observation & treatment of their patients & that of course relies on what the patients related to the doctor about their compliance to the diet. Personally, I think it can depend heavily on how long you went undiagnosed -- however many years those antibodies were building up under your skin w/o your knowledge. I know that I had celiac as far back as 8 or 10 years old b/c I figured out that any time I ate anything that had malt in it; I got sick as a dog -- GI kind of reactions. I learned not to eat malted milk balls or Carnation Instant Breakfast Chocolate Malt flavor or Malt-O-Meal crackers among other things. Wheat did not seem to affect me but boy I'll tell you, malt sure as heck did! When I became a teen & experimented with beer -- I wasn't even thinking about beer having barley (malt) in it. Woo boy!!! Was I ever miserable! There were other symptoms of celiac back then but who knew? Now I can piece it all together. So let's say from 10 yrs. old to 55 yrs. old = 45 years. Yes, I had very mild, minor dh for several years off & on before the mother of all out breaks happened. So in answer to this question, yes, it could very well be or it could be that combined with a lot of previous exposures.
  28. 3 points
    Also, your intestines will continue to be destroyed so eventually you will have some interesting bathroom issues.
  29. 3 points
    Yes, cancer is a risk. but you will probably die from the anemia first. And it's not a fun way to go. You get sooooo tired you can hardly even enjoy a tv program. It becomes so hard to catch your breath when you walk around the house. Forget about walking from the parking lot to your grandkids soccer game. Your heart will start beating faster to try to make up for the lack of oxygen. Your body will start making larger red blood cells that can cause stroke in the smaller blood vessels. You get those annoying and ugly broken blood vessel bruises. I know that was what it was like for me. Your bones will get more brittle, too. The inflammation caused by untreated Celiac leads to things like gum disease.
  30. 3 points
    This is not a good plan for finding out if this is dh. FIRST: ALL celiac testing requires the patient to be on a full gluten diet, not a gluten light diet & not a gluten free diet & not a, "I only went gluten free for a couple weeks & then started right back eating it for 3 days" diet. THIS INCLUDES DH BIOPSIES! I get so pissed with these doctors who tell the person to try going gluten free & see what happens. Makes me want to pull my hair out!!!!! If one had gone gluten free & then wants to be tested for celiac, they have to do what's called a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ NOTE: 60% of those with dh test negative on the celiac serum panel. If you suspect dh, the easiest, best way to get a dx is to get a dh biopsy Here's a whole bunch of links for you: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ 9 times out of 10 the dermatologist will do the biopsy wrong & take it right on top of a lesion. Take someone with you to make sure it's done correctly b/c they like to take it from areas where you can't see what they're doing such as your back. http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/ http://www.cureceliacdisease.org/faq/ive-had-rash-patches-on-my-left-forearm-that-itch-and-burn-but-didnt-have-the-blisters-could-it-be-dermatitis-herpetiformis-dh-even-though-i-dont-have-the-blisters/ http://www.cureceliacdisease.org/faq/whats-the-sequence-of-events-when-gluten-is-consumed-for-someone-with-dermatitis-herpetiformis/ http://www.cureceliacdisease.org/faq/if-im-on-a-gluten-free-diet-can-i-still-have-outbreaks-from-dermatitis-herpetiformis-dh/ http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ DH can come & go whether one is on a gluten free diet or not. You see, the antibodies are deposited under the skin & they are vexing as hell -- I swear they have a mind of their own. It takes time for them to all get out of your skin -- varies with each person; and until that time, the dh can wax & wane.
  31. 3 points
    Hi jeannie, You are right, there is a lot of confusing information about gluten on the internet. Plenty of web sites are just trying to make money off people being sick and want to sell them some kind of gluten cure book or something. That's actually a pretty good way of telling if the web site's info is reliable. If they spend most of the web site verbiage on pushing things for people to buy then it is obvious that's their main goal.
  32. 3 points
    There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response. The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten. But people love a good conspiracy theory and to pretend to be experts on the internet and spread nonsense on forums. https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/
  33. 3 points
    Those look like gluten removed beers and are not really gluten free. They are made with barley and wheat and supposedly the “special” brewing process reduces or elimates the gluten below 20 ppm. But the celiac community says these beers are not gluten free enough to be safe for celiacs. Consider selecting a distilled alcohol beverage, wine or a gluten free beer (not made from gluten) in the future. https://www.gluten.org/branchnews/gigbeerstudy/ https://www.gluten.org/toxic-truth-gluten-free-beer/ https://glutendude.com/alcohol/do-not-trust-gluten-removed-beer/ I hope you feel better soon.
  34. 3 points
    I am sorry to hear about the T-1 diabetes diagnosis. But your husband is not right about the "shock to his system" causing it IMHO. Instead, it is more likely he developed it related to untreated celiac disease. Maybe print this article out and have your husband read it. Celiac is associated with multiple other AI diseases. Some of the forum members here have multiple AI conditions. T1D is one of the associated conditions with celiac disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3741914/ more info: https://www.verywellhealth.com/celiac-disease-related-conditions-4013339 Here is a link to the diabetes forum where you might find some good info. https://www.diabetesforum.com/forum.php The past can't be helped, but we can try to make the future better.
  35. 3 points
    Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten, other things become collateral damage and the body "associates" them with part of the problem. I have had intolerance come and go and some stick around. Read up on food intolerance issues, and see if this might also help address some of the issues.https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  36. 3 points
    What? How can you (most likely not a doctor) make that call? We try to be supportive on this forum which is dedicated to celiac disease, Non-Celiac Gluten Sensitivity or other autoimmune issues where a gluten free diet might help. What brings you back? You last posted in 2013. Are you experiencing current issues that may be attributed to a gluten exposure? I am curious.
  37. 3 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!
  38. 3 points
    Hello everyone, OP here. It’s been 3.5 years since the diagnosis, 3 years since the above rant. Wow, time has flown. Thank you all for listening, for your thoughtful kind responses. I’m in a much better place now with the diagnosis... and reading my OP was kind of amusing, gosh I sounded so angry. Lol. I stand by my feelings on the gluten lite fad though! But I’m not actively angry about all the minutiae anymore. I’m grateful for my gluten-free grocery store items, I order myself that nice gluten-free Italian pasta over the internet from time to time, I’m more restaurant savvy, I’ve got some sweet cookbooks. Reading your comments, y’all have motivated me to do my part to contribute to sites like findmeglutenfree.com, and add reviews on Yelp, because that type of stuff has been a lifesaver for me. A good day to you all!
  39. 3 points
    Refractory Celiac is one possibility, but I would say it is more likely he is getting gluten somewhere. Questions with possable reasons. Does he eat out at restaurants, probably getting CCed if yes. Is the house gluten free. If not then he is probably getting CCed in the house. Does he eat a ton of processed foods? In many cases celiac that eat lots or "Gluten Free" processed foods that contain traces of gluten can build up beyond the recommended safe gluten threshold for many celiacs. There was a study done on this by GFWD short time ago. For now transition to whole foods only diet, remove processed foods, and only eat at home. Cook in dedicated gluten free cookware, take extra precautions rinsing raw produce before cooking, using freezer paper for prep surfaces, perhaps liners for crock pots, and some cheap nordicware microwave cook ware to make sure the cooking implements are not glutened. I wish you luck in figuring it out. Of course it could also be peer pressure and eating gluten foods and lack of caution for daily life...How old is your son?
  40. 3 points
    Rituxan is not chemotherapy, it is an antibody treatment. I am well versed in this as my co-worker has ITP and has received Rituxan before when his platelet counts have gotten too low. It is NOT a cure for any autoimmune disease. It knocks it into remission for awhile. Some people have longer remissions than others. They only use this method of treatment in extreme cases of any AI disease/cancer when you get close to dying. Like most drugs, it has serious side effects that can be somewhat counteracted with other drugs before the infusion but I would never classify this as a safe drug. It's immunosuppressive so does come with risks. For those who think that this can cure Celiac or knock it into really long term remission.......no, it won't. There is no recourse except a strict gluten-free diet, which is much better at giving us complete remission than Rituxan. For those who do not do so well on the gluten-free diet, there are reasons for that which can be addressed by the medical community. It might even include a few treatments of Rituxan to keep someone from death's door, until they get better enough to deal with the AI problem in another way (which is what they do for ITP) but anyone with Celiac who receives this treatment WILL eventually become symptomatic for Celiac again, if they continue to eat a gluten filled diet. I can actually see the logic of using this treatment on people who almost reach the point of no return to stabilize them to save their life (my co-worker's experience) but for someone with Celiac/Dh who makes a point of letting people know they have a master's degree in a science field while insisting this treatment means they can and do eat gluten makes me go like this:
  41. 3 points
    Hey, this is the place where you can whine all you want! We get it! I am so sorry that your family is not supportive. Do they know that celiac disease is genetic? That they can be asymptomatic and still have celiac disease? I am also sorry that you were glutened! You need to stand up and advocate for yourself. Consider joining a local celiac group for support. I dine with my family. I squally order a drink. For a while it drive my parents crazy, but now no one cares. Better to be healthy than indulge in gluten! Be sure you take food with you. I can tell you that when I open my cooler at a high school football game, the people around me are envious. My own gluten-eating family begs for additional slices of my gluten free cakes and other goodies. My daughter does not have celiac disease, but her friend does. For prom, the group is are going to a restaurant that will accommodate her celiac friend and a vegan. How cool and supportive is that? Be annoying! It is your right to maintain good health! Good luck in your upcoming finals. We start University applications soon!
  42. 3 points
    Welcome to the board. You only need one test to be positive to have celiac. In fact you can be negative on all blood tests and still have celiac! Your doctor seems to be unaware of this and should have had you get an endo after they had that positive test. Do be sure to keep eating a regular gluten diet until after your endo. Also make sure they are taking the biopsies of the small intestine they need to take for celaic. They should take at least 6. Keep in mind that damage can be patchy and missed. After all celiac related testing is done get onto the diet strictly. Go with whole foods for a bit. Limit dairy and don't try gluten free oats until you are well healed. The gluten free lifestyle can take some getting used to and we are here to help in any way we can. Be sure to read the Newbie 101 thread as it will have a lot of info to keep you safe. Enjoy your favorite gluten foods over the next couple weeks. Have some puff pastry for me. It is the only thing I haven't found a gluten free replacement for but most other stuff like pizza, artisan breads, cakes and cookies etc have good replacements to try after you have healed a bit. There is a light at the end of the tunnel but it can take a bit of time to heal. Be patient with your body and I hope your constant pain and D resolve quickly.
  43. 3 points
    I am sorry to hear about your frustrating experience with the physicians. To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier? If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude. It is your own body, if you know that gluten makes you feel bad, don't eat it. My daughter was diagnosed 4 years ago. We haven't seen our GI doctor in 3+ years. Celiac disease does not require medication. You self medicate through a gluten free lifestyle. BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.
  44. 3 points
    You have been diagnosed and you do not know what to do next. First, do not panic! and Welcome to the Forum! I have posted this information in pieces and parts on this site during the past year so many times and some newbies suggested it would have been helpful if they had seen it ALL --right away after they were DXed.... so, I thought, why not paste it all together in one spot? Don't think about what you cannot eat--think about what you can eat: Fresh meats, veggies, fruits, nuts, eggs, fish, etc. Some celiacs are lucky and can tolerate dairy right now, but many of us had to give it up for a few months. Why? Because lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become “lactose intolerant.” This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again. Learn how to read Labels. Dietary concerns –LISTS OF safe and unsafe gluten free foods http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html DISCLAIMER!! The following suggestions ---are just that: suggestions. I have no affiliation with any of these websites, organizations, authors, or companies and I am not a paid spokesperson and I am not endorsing any specific products. They just worked for me or other members. I am not a doctor and this is not medical advice. I am not a nutritionist. I am just a fellow Celiac who learned the ropes from months of research and from the generous and compassionate contributing members of Celiac.com And, as my wise friend, KarenG pointed out, I should say this info applies to those of us in the US. I cannot say what companies in other countries do. Some resources for negotiating a gluten-free life: Living Gluten Free for Dummies--Danna Korn Celiac Disease: the First Year by Jules Dowler Shepard Cecelia's Marketplace Gluten-free GROCERY SHOPPING GUIDE http://www.ceceliasmarketplace.com/gluten-free/2012-2013-gluten-free-grocery-shopping-guide/ A quick “get-started” menu for gluten-free eating follows, but it is by no means "inclusive", just some ideas. Consult the many on-line gluten-free recipes available and the many wonderful contributions from our members in the cooking and baking sections of the Forum: FLUIDS: Drink a lot of water. Celiacs are dehydrated from malabsorption. Plus, it helps cleanse toxins from body tissues and organs and keep the bowels running smoothly. But, yes, (because I know you are going to ask ) unflavored coffees and tea are okay. Check teabags for "malt" --sometimes they use it. DIGESTIVE ENZYMES help if you have pancreatic issues that cause trouble when digesting fats and proteins. A good one is Digest Gold, but others may have suggestions as well. Probiotics are very beneficial to restoring healthy gut balance. Choose a multi-strain variety like Florajen3. All the digestive issues like acid reflux (GERD) and heartburn, excess gas, camping, diarrhea and constipation should disappear or diminish on a gluten free diet. VITAMINS: Most doctors (and fellow celiacs) recommend a good, gluten-free multivitamin. Some of you will have vitamin/mineral deficiencies or B-12 or Folate anemia--and you should have blood work done to see where you stand. Malabsorption creates all sorts of problems. FOLLOW UP CARE: I suggest follow-up care from a celiac-savvy doctor to everyone post-DX. Lab work ( including CBC, CMP, SED RATE, IRON/FERRITIN levels, B-12, Folate levels and THYROID panels) and barium studies of the GI tract, if warranted. Do not be afraid to ask your doctor.(IMHO) A whole foods diet is suggested to many of us as the best way to speed healing of your gut lining, but many people succesfully incorporate Certified gluten-free products into their diets right away! As with all things regarding Celiac, everyone is different. Earth Balance (soy-free) is a good choice if you cannot have butter. You need some good essential fatty acids: Safflower oil, sunflower oil, extra virgin olive oil, coconut oil. Some Breakfast ideas: Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon Add: rice milk, almond milk or coconut milk (The So Delicious brand is excellent) and add berries or sliced banana. CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill are a few examples) NOTE: It is my understanding that Quaker Oats are cross-contaminated! Some celiacs cannot DIGEST oats. Only you can decide. Gluten-free muffins made from a mix or purchased. Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's, Glutino or homemade bread) Pocono Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family) Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten) gluten-free packaged pancake/waffle mixes (Pamela's brand is very good as is Bob's Red Mill –we use BRM on the site, for short) Van's frozen waffles. FRUITS and VEGGIES—eat plenty of these daily in your diet. LUNCH and DINNER ideas: Leftovers from last night's dinner make an easy lunch Some Progresso soups are gluten-free. Check the label! Some Pacific and Imagine brand soups. Read the label! A sandwich with gluten free bread or rolls—UDIs, Rudi's, Glutino Genius, Scharr's and Canyon Bakehouse --all have decent packaged breads, rolls and bagels, but homemade is the way to go. (I have a simple recipe for white sandwich bread that is delicious if you want it.) A big salad or an antipasta with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay. Homemade is best! Homemade vegetable minestrone ,chicken soup, stews, black bean or White bean chili (use gluten-free stock--pacific, imagine or make your own from scratch--even better!) Chicken or bean nachos (can use corn tortillas) Red beans and rice grilled burgers and beans (Sweet Baby Ray's BBQ sauce and Bush's Baked Beans are gluten-free)on a bun (Udi's makes hamburger rolls now or you can make your own. CHEBE bread mix makes killer rolls) almost all mexican food is safe (just no flour tortillas!) Pasta and sauce w/meatballs (brown rice or corn pasta) TINKYADA BRAND penne pasta is delicious! Cook 13 minutes exactly. Trust me!) and use gluten-free breadcrumbs (purchase or just grind some gluten-free bread and season)in your meatballs Another good pasta is CORN pasta. BiAglut or Sam's Hill are a couple. Cook as directed. meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels) Vegetarian chili--homemade. I eat a variety of veggies.....whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock. Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy Potatoes—roasted, grilled, in a gratin or whipped with milk Fritattas with veggies and salad Stuffed peppers—with ground turkey, beef or lamb and rice ANYTHING GOES!! ANY recipe you already use can probably be altered--just use gluten-free breadcrumbs or rice/corn pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Snack ideas that are safe and handy Cozy Shack Rice Pudding or Tapioca cups (in the dairy section) All natural applesauce cups Gluten-free cookies or muffins (Bake them or buy them.) Pamela's Baking Mix is versatile and good for cookies, baked goods. There are many options (check the recipe and baking section on the forum) Bagel with cream cheese and jam or nut butters. Udi's and Glutino bagels are pretty good (frozen section) Pamela's and King Arthur gluten-free--makes a very good brownie mix too! Chobani Yogurt or So Delicious coconut milk Yogurts- if you cannot have dairy Scharr cookies (chocolate-dipped shortbread or the mocha layers--are VERY tasty!) Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter or almond butter or hummus smeared on Mary's Gone Crackers, Crunchmaster's or Glutino crackers with cheese or peanut butter BOAR's Head or Applegate Farms deli--ham, turkey, pepperoni, salami, proscuitto--most all cold cuts and cheeses Slices of cantaloupe wrapped in proscuitto Watermelon with crumbled feta cheese Peanuts, almonds, cashews. (I like Blue Diamond or Nutsonline.com has a HUGE gluten-free selection of nuts and flours) SUNMAID raisins, prunes. Craisins by Ocean Spray. (**some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.) Smoothies- made with coconut milk, various fruits, yogurt, etc. Potato chips----like Cape Cod, Kettle Brand, Utz Indiana Popcorn--comes in all flavors--the kettle corn is delicious Glutino brand pretzels—they come in all flavors even chocolate -coated Coconut milk, creamer and ice cream ( So Delicious brand is very good) Ice Cream, if dairy is not a problem for you. Most Haagen Das flavors are good, for example. READ LABELS!!! Organic Corn chips w/salsa, hummus, or Guacamole Sunflower , pumpkin or flaxseeds Candy—Hershey's kisses or regular size bars, regular size Reese's cups, Snickers, York peppermint patty, Health Bars, Butterfinger and M &Ms plain and peanut. Ghirardelli squares. These were safe--last I read online--but READ LABELS! Enjoy Life chocolate chips, chunks and Boom Choco Boom bars (free of ALL top 8 allergens) Make some Chex mix with gluten-free chex cereals gluten-free Rice Krispies treats (recipes are online) CHEBE pizza and breadstick mixes—are very good. Against the Grain and Glutino make some good frozen pizzas. Check the labels of all packaged products-- if they were made with wheat or gluten, they will state so on the package. Very important: Cross-contamination is the bane of our existence. Learn how to make your home safe. http://celiacdisease.about.com/od/cookingglutenfree/a/crosscontaminat.htm Hidden sources of gluten: http://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf Packaged/processed Foods: A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. It may just mean they did not knowingly put gluten ingredients in the product. I, personally, look for the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big G F in a circle. That's just me. I also use common sense. I know that foods that are inherently gluten-free will not carry a gluten-free label on them (oranges, broccoli, plain cheddar cheese, etc.) Some DEDICATED gluten-free facilities are listed below. There are others. Google away! : Glutino Bob's Red Mill gluten-free 1-2-3 Meredith's Marvelous Authentic Foods gluten-free Pamela's Cause You're Special Udi's The Cravings Place Andean Dream Kinnikinnick Organic Nectars Namaste Orgran Foods by George Gluten-free FULL FLAVOR Gravy Packets Prana Bar Enjoy Life EnergG Gillian's Against the Grain Many other companies will provide a list of gluten-free foods. The members on here can tell you which ones are good about this. They make all kinds of ready made mixes and flours to make it easy to start baking. The cooking and baking section on the forum has thousands of great ideas—these guys are amazingly creative! That should get you started--- until you can create your own diet and menus and feel less "dazed and confused" by your new life. You're going to be okay! Best wishes! IH
  45. 3 points
    Have you read the newbie section under "Coping"? There are lots of tips to expedite healing -- like giving up dairy until your intestines heal.
  46. 2 points
    Yes, I spent many years from age 11 on up, light headed and dizzy not knowing it was Celiac. I get dizzy/lightheaded from eating full on gluten,(among other symptoms) cc, and environmentally when I have been damaged and my gut is a mess and my immune system is in full on attack mode. During healing I only went to stores without a bakery on premise. My husband had to shop at the stores with a bakery on premise, since I would get dizzy 5 aisles from the bakery, then my olfactory senses would smell cinnamon churros, buns, pizza etc. I would get a flood of mucus and a major cough on the way home, often losing my voice along with my joint and muscle aches, light headiness, and headaches. It took me awhile to catch on. Even now I try to shop when the bakery is not in full swing, or I take the long way around the store. I am only 26 months post challenge healing. Better but no where near my best. I get flushing from my gluten and corn intolerance. You say it is your face. My face flushes and particularly notable for me is my upper chest below neck does. This is a major DH spot for me now when it use to be just my elbows, arms, buttocks that flared. This summer it was my chest and elbows that flared with itching everywhere even without the DH when some fish from the store was cc. My opinion on the anxiety is it is your natural interpretation (or others) to the symptoms that are unfolding. Your brain tries to interpret and make sense of it. Also at some part in your life when you describe your symptoms someone suggested or labeled it anxiety and well now you tell yourself your anxious. Now when you eat you say oh no I have anxiety. Instead you should ask if I know it is gluten free am I reacting to something else or am I stressed about gluten around me? Many of us do get anxiety, but more so the intolerant body is reacting to the food and our brain is trying to make sense of it. Some of the anxiety strategies work to calm you down, deep breaths etc. So feel free to use them if they help. Is it clinical anxiety only a psychiatrist can say, but I wish many saw former labeled mood disordered Celiac's pre and post diagnosis because I suspect they may see a difference clinically. Did your Dr's tell you some of us get additional food intolerances? I got racing pulse after my gluten challenge when I drank cows milk. I now drink homemade almond milk, because store bought brands contain corn derivatives another intolerance that unzips my gi integrity as well and causes brain, nerve , and other issues for me. So I had to suggest you may not have the full picture yet. Also you have some healing to go. I do not consider myself anxious in a clinical sense now that my issues have finally been diagnosed in my 40's, but I do see how my pediatrician told my mom that the symptoms I begged her to take me to the Dr for at 5 he considered just my nature/just me/personality etc. as a child. He did not label my anxious, but told my mom strategies to calm me down or distract me. I now know I was eating things then that caused the symptoms I have now and then some. Decades undiagnosed took more a toll on me and I have a plethora more now. Alas I do my best to accept those undiagnosed, misdiagnosed years, and do my best to embrace my finally known condition. As for the pressing down pain and not eating, normal also in my experience. I had stabbing pains and swollen organs for months after. My gallbladder was out of commission for months. A celiac chiropractor/TCM practitioner is my source of relief. I was tested negative for other issues bacteria etc with my scopes, but I do find homemade water kiefer as a source of safe probiotic for my gi. I have to be careful with supplemental probiotics due to gluten cc or corn ingredients. As for not being hungry I spent the first several months blending foods to smoothie like consistency as sometimes real food was painful on the organs. So from my experience and viewpoint all you are experiencing are possible as a newly diagnosed Celiac. I am glad you found out what ails you and you have joined us here. This community has helped me immensely learn what I had wrong and how to do it right. Welcome, keep reading, and learning. Most of all best wishes on your path to healing.
  47. 2 points
    gadamek and hummingbird, I just want to echo what Ennis_tx said. A good B-complex, Magnesium and Vitamin D might (not cure) but it could alleviate many of your symptoms. Gadamek you said you had ringing in your ears it is called Tinnitus and Magnesium has been show to help Tinnitus. http://tinnituswise.com/remedies/tinnitus-magnesium-treatment-deficiency/ Low Vitamin D and B-12 has been associated with Neuropathies. Here is the research on B-12 entitled "The histopathological evaluation of small fiber neuropathy in patients with vitamin B12 deficiency." https://www.ncbi.nlm.nih.gov/pubmed/29052170 Here is a medscape article about it entitled "Low Vitamin D Levels Common in Painful Diabetic Neuropathy" https://www.medscape.com/viewarticle/846044#vp_2 where the reviewing doctor says it well. This finding was/ has not been followed up on because quoting "Dr Malik noted that a large randomized clinical trial of vitamin D would probably have to be funded by the government or other interested party rather than the pharmaceutical industry. "The key problem is, nobody is going to make money from vitamin D [research and development], so nobody's pushing it. It's extremely cheap." And if you don't have diabetes that doesn't mean it (Vitamin D) won't help you. Knitty Kitty talks about she feels much better when her Vitamin D levels are twice what is considered low normal. Here is where Vitamin D has been linked to pain associated with Fibromyalgia https://www.ncbi.nlm.nih.gov/pubmed/21375201 And Low Vitamin D status has even been associated with Hashimotos https://www.ncbi.nlm.nih.gov/pubmed/23337162 But you never people (doctor's) say take Vitamin D for your thyroid. They (the researchers) concluded quoting CONCLUSIONS: "We demonstrated that serum 25OHD levels of HT patients were significantly lower than controls, and 25OHD deficiency severity correlated with duration of HT, thyroid volume, and antibody levels. These findings may suggest a potential role of 25OHD in development of HT and/or its progression to hypothyroidism." This knowledge has not made it down to the clinical level. It was called the "Clinical Gap" that on average takes 17 years for new research to be applied/used in a clinical setting. It could also be what is called a subclinical deficiency. If 50 OHD + is neeed (like in Knitty Kitty case) to feel better from being low in Vitamin D then for her she would test normal but feel terrible. This may be what is happening in your case. I echo what Ennis_Tx said --- it is common especially with Magnesium and B-Vitamins like B-12 etc and as we see in Vitamin D. Here is an article about subclinical celiac disease entitled "Subclinical coeliac disease: an anthropometric assessment" https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.1994.tb01281.x where they found that concerning their results quoting Results. "The overall prevalence of malnutrition in our series of celiac disease patients was 53%. Prevalence of malnutrition (actual body weight less than 90% of the ideal) was significantly higher in classical coeliacs (67%) than in subclinical ones (31 %," And why it was concluded 8+ years ago (only another 8+ years until it gets down to the clinical level) that "Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet." https://www.ncbi.nlm.nih.gov/pubmed/19154566 In fact it can take as long as 10 years to overcome the nutritional deficiencies (without supplementation) to overcome the deficiencies that develop in a Celiac patient and why I prefer to supplement. See this research about the topic entitled "Evidence of poor vitamin status in coeliac patients on a gluten‐free diet for 10 years". Here is the link https://onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2036.2002.01283.x?inf_contact_key=ea0f2a766da007cd64921c490e0f3144800b47a6bffe30d3db72e448ff52727e& It may be because gluten free foods are not enriched like gluten containing foods or it might be because your stomach acid is not strong enough to dissolve them so your small intestines can absorb them. Here is an article that explains how low stomach acid (being misdiagnosed) as high stomach acid can be a very bad thing. https://www.naturopathiccurrents.com/articles/hypochlorhydria-not-enough-good-thing 99% of Naturopaths conclude restore your body stomach acid production and improve your health. They know that low or no stomach acid can restrict your bodies ability to absorb critically important nutrients. quoting from the naturpathic currents article Vitamin Mineral Deficiencies "As noted previously, deficiencies of folic acid, vitamin B12, Vitamin D, Zinc, Vitamin A, calcium, iron, and zinc are associated with low stomach acid [1,7,10]. These deficiencies are due to a decreased ability to disassociate minerals and vitamins from food stuffs, as well as related affects on gastric secretions other than hydrochloric acid that facilitate absorption [4]" If we are clinical or subclinically low it better to find the root cause of the deficiency or we have to supplement the rest of our lives (the way we might take a hormone replacement) or medicine instead of finding out Vitamin D, or Magnesium or B-12 can help us with our Neutropathies. I must stop for now but I hope this is helpful. ****this is not medical advice but just some of the things I have learned from being low in stomach acid and being misdiagnosed. And what I have done to help my neuropathies. I used to wake in the middle of the night from pernicious anemia a B-12 deficiency until I treated my stomach acid so I could begin absorbing it naturally. I had terrible leg cramps (also that would wake me up too), the spasms continued until I took Magnesium Citrate. I had a SAD disorder until I took Vitamin D. ... who knows if it helped my thyroid anomalies or not it has been too long to remember if I was taking it at the time it (thyroid) got better.. .. but I know it was around the time I received my Celiac diagnosis that I caught up my Vitamin D levels because they then knew to test my levels. . which to my surprise was low and had been low apparently for the 30 years before I received my Celiac diagnosis. ****Again I hope this is helpful but this is not medical advice just things I have learned that supplementation is a much easier way to catch up on a deficiency and why I still take Magnesium (and probably always will) it helps soooo much but I don't no longer take Vitamin D or Vitamin B-12 since I caught up on those. A always “Consider what I say; and the Lord give thee understanding in all things” this included 2 Timothy 2: 7 Posterboy by the Grace of God,
  48. 2 points
    I honestly use a grain free quick bread in my bakery, we gave up grains completely. But I will lend you some advice. First off, give up bread for a few months if your first going gluten free, you have ot forget the bread taste and get new standards. Next few tips with gluten free breads, Gluten breads use the the gluten "glue" to give it that doughy texture and hold the shape. In gluten free breads we use gums xantham or guar in 1/4-1tsp, psyliumm husk 1-2tbsp or konjac 1/2-1tsp per full size loaf to hold shape And the flour starches for structure, in the case of nut based breads the harder structures and large amounts of egg whites do this. A leavening agent either yeast, baking powder, or a baking soda and vinegar combo, to give air bubbles and rise. OK now lets trouble shoot IF your bread rises initially then collapse you probably do not have enough binder, or something to act as the lattice/framing of your bread house. Considering your using a mix it should have that starchy (diabetic carb bomb) already in it and you might need to adjust your binder or cooking times. Try upping the gum by 1/4 tsp at a time, I use psyllum husk (1-2tbsp) myself but xantham gum makes a lighter bread, even if it makes me sick personally I got to admit this. PS if you have issues with xantham you can try guar gum as a direct trade off, many get sick from xantham as it is grown from a mold lattice on either corn, broccoli, or wheat. If your bread fails to rise at all, then your issue is likely not enough leavening try adding a extra 1/2 tsp baking soda and 1tsp apple cider vinegar to see if this helps, or even doubling that for a proof of concept. The leavening it could also be due to either your yeast being old OR climate. My bakery will not bake during a thunderstorm or high barometric pressure as our gluten free goods are more sensitive to this and the tops always invert during bad weather. Other things to consider might be your machine and temperature/timing. It might not be suited for your gluten-free breads...Honestly as a baker for years, I can tell you gluten free breads are the most finicy thing your going to work with. Few grams off of water, a few mins off of timing, etc. and it can be too moist, a dry brick, pile of mush, or powdery mess. Try the mix traditionally by hand per instructions to rule out the machine. Also invest in a scale.....it will save you tons in the future as you can have a 7-20 gram difference in some flours scooping.
  49. 2 points
    I second Beverage's comments, and wish you strength. FWIW, my kid was heading toward being hospitalized for psych issues before someone finally thought to screen for celiac. Part of the reason I'm active on this forum is to help raise awareness, with the goal of saving other people from some of the pain our family went through over the decade between when issues first cropped up and when someone finally thought to order the blood test.
  50. 2 points
    If it makes you feel any better, a recent study indicates that you are probably not crazy: https://academic.oup.com/ajcn/article/107/2/201/4911450 If you don't have time to read the whole thing, basically the "average" compliant celiac accidentally consumes >200ish mg of gluten in a day. The recommended max (to avoid significant intestinal damage, cancer risk etc.) is 10 mg per day. Kind of surprised no one has posted this article... but then again, it's easier to bury your head in the sand than to perhaps consider that what you already find difficult/restricting may not be entirely adequate. I'm betting that >200 mg adds up from small exposures in poorly controlled shared kitchens, occupational exposures, large quantities of gluten-free foods near 20 ppm, personal care products that you aren't supposed to eat etc. Those with only intestinal symptoms (or perhaps no symptoms) rely largely on imperfect diagnostic tools (endoscopy, bloodwork) to assess how well they are doing periodically - those with DH just need to strip naked and take a look in the mirror and can do so every single day. Anyways, I agree it sucks to be gaslighted by fellow celiacs and doctors on the issues that you described. Scientific evidence in the area of practical lifestyle decision choices for celiac disease is limited, and I think more people need to remember that when they make definitive statements.
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