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  1. 4 points
    Einkorn is a type of wheat. It contains a lot of gluten. It is not for people with a medical need to be gluten free - such as Celiacs.
  2. 3 points
    I think GFinDC has sound advice. I was IgA and CRP elevated and read about Celiac. I have silent Celiac and had lots of strange symptoms and it was missed for over a decade. The endoscopy was a breeze. No pain afterward, no overnight stay. Biopsy positive for damage and I only had 2 feet of undamaged Small intestine. It has been 13years of healing and GI looks totally healed but I still have leaky gut symptoms and food intolerances which are fading. A friend of mine did not get the biopsy and she skirts her mind around being gluten intolerant one day and Celiac the next. She lives her life on the gluten consumption edge getting sick here and there. If she is Celiac it is damaging her. Wish her Dr. was more firm about the biopsy so she could be more serious about her health.
  3. 3 points
    If you don't talk to doctors then they don't say stupid stuff.
  4. 2 points
    Hey Squirmy! Looking forward to communicating with everyone again. I do see that nothing ever changes.......people STILL having trouble being taken seriously by the AMA. Well.....except for Olivia! There are more people in my family being diagnosed, which came as no surprise to me. We even recently got back in touch with some of my mother’s cousins, who now live down south and guess what? One of the adult daughters was diagnosed and she is like me......classic Celiac. The poor thing has numerous issues due to the length of time figuring it all out. If there is one diagnosed Celiac in a family, there will be others.....guaranteed!
  5. 2 points
    Can not wear a hat? I limit my hat use by using a pretty umbrella when walking to pick up school children or watch a game. Hubby will use a manly golf umbrella to keep cool or allow two people some shade. Consider umbrellas (if your exercise is low impact) to help off set when you need to wear a hat.
  6. 2 points
    Hey Arlene! I'm still kicking but it's been an intense year. We moved Mom into Assisted Living last summer and she resisted it all the way. Made our lives hell....until she lived there for about 4 months and decided it wasn't as bad as she thought it was going to be. They have Happy Hour! 🍹 But she thoroughly enjoyed trying to make us feel guilty....which we did not. She will be 87 this year and she was trying to hide from us the fact she was having trouble taking complete care of herself. Her health suffered but she is stubborn and did not want to move out of her house. Guess who won that battle? 😉 This year, we are going to move my husband's mother into Assisted, from Independent. She is 92. To say it has been busy is the understatement of the year. Trying to do all this while still working is not recommended. So, come the end of September, I will be officially retired. That way, I can still tend to the needs of the Mom's and actually have a life of my own. What a concept, huh? 🤦‍♀️ Hope all is well with you!
  7. 2 points
    hmm, that explains why I always have the urge to grab a club and bang something with it......lol
  8. 2 points
    lolz - same! the ultrasound didn't even show the cyst on my kidney that the ct guy said I had. lolz, they take my blood and tell me horror stories. then, nothing is wrong. oh, news flash - I have celiac. nothing is 'normal' - but everything is normal? blah. I feel great. my poor husband - they have had me dead and buried so many times. he buys me kitchen appliances when he's trying to cheer me up. I am out of cabinet space! hahahaha 😛
  9. 2 points
    Welcome! What was the lab range for the TTG IgA test (your result was 12)? Your Immunoglobulin A (IgA) test is within range that means any other IgA related test should be valid. The EMA is pretty specific to celiac disease. Consider getting that endoscopy. They put me out and I had no issues at all! Why get it? Because it confirms celiac disease. The blood tests help but are not perfect. Plus, the endoscopy can assess the damage level which can come in handy later on (benchmark). Not to mention some Gi’s will not give a diagnosis without it. I have a firm diagnosis, but my hubby (who went gluten free some 20 years ago based on the advice of two medical doctors) does not. He is doing well. Refuses to do a challenge because he would have to consume gluten and he knows that it makes him sick. But he will tell you that I get way more support from medical, family and friends. It is easy to get our kid tested periodically (even if symptom free) because of my diagnosis. I might even have some protection if I go to jail! 😆. My last endoscopy revealed a healthy, healed small intestine. So different from my Marsh Stage IIIB five years ago. Like you, I was pretty much symptom free. My only symptom as anemia which was always blamed on another genetic anemia I have (Thalassemia). You are lucky your endo or PCP tested you for celiac disease. Sounds like a keeper! So, before you make a firm decision, take the time to research and think about it. You have a very strong possibility of having celiac disease because TD1, autoimmune thyroiditis and celiac disease are strongly linked due to gene type. A firm diagnosis might be important to you later. Some folks do not have the opportunity to even get a diagnosis for many reasons.
  10. 2 points
    posterboy:. she got that disgusting yellow kill-all medicine when she had the thrush. it is long gone, and I do not expect it to return now that she is eating gluten free. her immune system should be up and running like a champ! when you have celiac disease, your whole body is at risk of catching everything or developing some weird a$$ disease because you're flying around in the uss enterprise with your shields down, basically. think of it as: your body has a diesel motor that you're putting gasoline into and expecting it to run. well, it can, very badly and not for long! when you adhere to the gluten free diet, your motor will run properly and your immune system will come back online. trust me, I went undiagnosed for 25 years, saw every doctor imaginable and endured every WRONG diagnosis you can think of. no pills worked, no treatment corrected anything. if you have celiac and eat a healthy, balanced, gluten free diet you should need less supplements as you heal. like magic. but not. lolz
  11. 2 points
    I'm so sorry it's so hard. I felt like I was hit by a truck, a really big truck, when I first went gluten free. Like the worst flu on the planet. Before I went gluten free, I had a lot of weight gain but it was all inflammation and I lost 30 lbs in a few weeks, but it was all water. I was very weak at the end of it, but on the road to recovery. Drink lots of water to help the poisons get out of your body. I just sat in front of the TV and watched some good old movies. I was also very hungry and tried to give my body good healthful whole foods, no processed stuff even if gluten free, NO OATS, no other grains. I got through it but it took several weeks.
  12. 2 points
    No drum roll. I have DH (biopsy diagnosis of Celiac April 18). I had shingles last July (6 th time in my 73 years) I am presently being treated for shingles yet again!! There is a huge difference in the symptoms & subsequent side effects of DH & shingles. During the active stage of shingles when the vesicles appear there is tremendous burning in the area affected, along the involved nerves & the underlying muscle/joint. Then flu-like symptoms, headache, chills, aches & pains. Itching & post herpetic neuralgia can last months/years. I mediate & stay active to allay the severity of symptoms DH causes generalised itching which is horrible.... I find worse than shingles but the pain & nerve burning is really dreadful with shingles. They are very different in their vesicle locations also as DH is commonly bilateral on the body & blisters last much longer. Shingle vesicles run along the nerves of the body & are generally not bilateral. I have not bothered to include the actual pathology of each but I'm sure you can find it online.
  13. 2 points
    Celiac.com 04/05/2019 (Originally published on 10/19/2009) - Gluten intolerance caused by celiac disease, or non-celiac gluten sensitivity, may affect virtually any part of the body. A culprit in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs. While this may seem to be an outrageous claim, a review of the many ways in which gluten intolerance can adversely affect the body will illustrate this point. So, let’s work our way down from head to toe. Celiac Disease Can Cause Hair Loss Normal, healthy hair is usually glossy and thick. An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or totally, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease. How Celiac Disease Affects the Brain Now let’s look at the brain. There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease. Headaches Common in Celiac Disease Headaches are a very common symptom of wheat allergy, as well as gluten intolerance. Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches. These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons. Night Blindness from Vitamin A Deficiency Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency. It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease. Canker Sores Common in Celiac Disease Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting. Dental Enamel Defects Can Indicate Celiac Disease While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities. Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions. Strong Link Between Celiac Disease & Eosinophilic Esophagitis Following the path our food takes to the stomach, we can look for effects in the esophagus too. Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations. When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation. Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too. GI Complaints Common in Celiac Patients Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption. But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes. Celiac Can Be Misdiagnosed as IBS In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort. Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues. One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease. Kidney & Urinary Problems Let’s take a look at the urological system. Even though gluten from the food we eat isn’t directly processed here, can it still be affected? The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains. Adrenal Fatigue in Celiac Disease Sitting just atop the kidneys are our adrenal glands. They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve. When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued. Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections. Celiac Disease Common in Hepatitis Patients Can the liver, the body’s largest internal organ, be affected by gluten intolerance too? One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis. Gluten Intolerance, Pancreas and Blood Sugar The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance. Autoimmune disease triggers the development of Type I Diabetes, and is becoming more closely associated with celiac disease. Testing for celiac disease is now becoming a routine part of examination when a child develops Type I Diabetes, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetic hypoglycemia in those with gluten intolerance, and appear to resolve with a low-glycemic gluten free diet. Celiac Disease Can Affects Limbs and Extremities So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease. I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently. With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested. Arthritis Associated with Celiac Disease Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen. Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function. Scleroderma can be associated with celiac disease. Skin Conditions Common in Celiac Patients The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop. Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well. Common sites are the backs of the elbows and the backs of the knees, or on the lower legs. Peripheral Neuropathy Common in Celiac Disease Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities. Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids. Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues. Fortunately they healed quickly and their neuropathy symptoms resolved completely. Malabsorption and Vitamin Deficiency There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance. Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities. Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet. As for me, I’ll be happy to be gluten-free, from head to toe.
  14. 2 points
    Several of you have mentioned multiple BMs daily as a symptom of refractory celiac disease, relapse, cross contamination, etc. I just want to say that having more than one BM daily is not necessarily symptomatic of a disease process. That is quite normal for a lot of people, as is not having a BM every day. It certainly can be, particularly if it is clearly a departure from your norm in the absence of dietary or lifestyle changes or if by "multiple" you mean several a day, especially if the consistency is quite loose. I think that as Celiacs we tend to give more attention to healthy eating habits than most people do anyway because we are already vigilant. That often includes getting more fiber and eating more "plain" foods than most people do like fruits and veggies that stimulate the bowel. It seems to be normal for me to have a fairly "big one" in the morning after breakfast and then a smaller one in the afternoon or evening. I'd rather have it like that way than being constipated. I hope I'm not getting too personal here.
  15. 2 points
    Celiac.com 03/26/2019 - People with gluten intolerance often have non-gastrointestinal symptoms, including several common skin conditions. If you have celiac disease or other sensitivity to gluten, a gluten-free diet may help to improve symptoms of these associated skin conditions. These Seven Common Skin Conditions are Associated with Celiac Disease Acne Links between celiac and malabsorption, as well as hormonal upset can contribute to a greater production of acne. Many birth control pills boast promises of clearer skin, their method is through hormone manipulation. Because many who suffer from gluten intolerance also experience a disruption of normal hormone function, this disharmony can lead to problems with acne. There are some anecdotal reports that acne can improve on a gluten-free diet. Canker Sores (Aphthous Stomatitis) Technically, the mouth is not part of the skin, but we include canker sores, since they are one of the most common non-gastrointestinal celiac symptoms, and easily visible in the mirror. Nearly 20% of people with symptomatic celiac disease had canker sores as one of their symptoms. In many cases, these canker sores are recurrent, and can be one of the few or only signs of celiac disease. Dermatitis Herpetiformis This painful, blistery condition can be very stressful, especially when misdiagnosed. An inflamed, itchy rash, dermatitis herpetiformis begins as tiny white filled blisters or red spots around hair follicles. Trying to hide or disguise DH, as well as trying to treat it when misdiagnosed can be incredibly stressful for a person. Read more on celiac disease and dermatitis herpetiformis at Celiac.com. Dry Skin Also correlated to malabsorption, dry skin is a very common complaint amongst those with celiac. But this condition is one that many people see even after the prescribed treatment of a gluten free diet. Why? Vitamin E rich grains are vital to maintaining skin harmony, but since many who are gluten intolerant begin avoiding grains completely—even those grains that are gluten-free, getting that important Vitamin E in their diets can become a challenge. Eczema Eating a gluten-free diet is becoming an increasingly popular mode of treatment for eczema. Those who are gluten intolerant also tend to have more advanced psoriasis.Psoriasis—Like eczema, psoriasis has in many cases shown improvement when the person is put on a gluten free diet. In Scott Adams’ 2004 article, he also mentioned that psoriasis in those with celiac tends to be more severe. Psoriasis Psoriasis is a common, chronic, genetic, systemic inflammatory disease that usually manifests as itchy plaques of raised red skin covered with thick silvery scales. Psoriasis is usually found on the elbows, knees, and scalp but can often affect the legs, trunk, and nails. There’s been very little research done on the association between celiac disease and psoriasis. That means there’s just not much good information. Some people with psoriasis claim to see benefits on a gluten-free diet, but that is purely anecdotal. One interesting finding recently was that psoriasis patients who do not have celiac disease or non-celiac gluten sensitivity commonly show high levels of antigliadin IgA antibody, and would likely benefit from a gluten-free diet. Some earlier studies have shown that celiac disease antibodies correlate with psoriasis activity, though little follow-up has been done, so there’s still a lot of confusion about any connection to celiac disease? Read more on celiac disease and psoriasis at Celiac.com. Rosacea Rosacea is a common inflammatory skin condition that shares the same genetic risk location as autoimmune diseases such as type 1 diabetes mellitus (T1DM) and celiac disease. Some studies have shown high rates of immune conditions in rosacea patients, while others have shown a connection between rosacea, celiac and other diseases. Still, more research is needed to nail down the connection. The most recent study showed that rosacea is associated with T1DM, celiac disease, multiple sclerosis, and rheumatoid arthritis in women, whereas the association in men was statistically significant only for rheumatoid arthritis. Again, for people with celiac disease, or a sensitivity to gluten, symptoms of these skin conditions may improve or disappear on a gluten-free diet.
  16. 1 point
    Gluten Free Facilities Ancient Harvest Badger lip balm (Look for gluten free label. They produce some products in another facility) Bakery on Main Better Body Foods Bob’s Red Mill Bush’s beans Cannon Fish Carnation Evaporated Milk Carrington Farms Coconut/Ghee Choice tea Crunchmaster Crackers Dakota Grass Fed Beef Derma-e Endangered Species Chocolate Enjoy Life Everyone Soap Fischer's honey Food Should Taste Good Fourth and Heart Ghee Gluten Freeda Gluten Free Pantry Glutino Green Mountain salsa Green Valley Dairy/Cream Cheese Hillary's Allergen Free Foods Hodgson Mill Gluten Free Honeysuckle turkey Hope Hummus Jollytime popcorn Kettle Brand Chips King Arthur Kinnikinnick Foods La Croix sparkling water Libby's Pumpkin Lil'l critters vitamins Lundberg Malk Minute Rice Musselman's Nick's Sticks Once Again Nut butters Organicville Pamela’s Products Polaner fruit spread Purely Elizabeth PUR gum Red Gold Tomatos Schar Skippy natural no stir peanut butter Sky Valley Foods Success rice Tessemae's Thousand Hills Beef Tinkyada Udi’s Gluten Free Waterloo sparking water Wholesome candy Wholeme clusters Wyman's frozen fruit Xochitl Dedicated gluten free lines—shared facility Blue Diamond (crackers only) Jason’s (toothpaste only) Country Archer Nuts.com (separate part of the building) Walden Farms ***Please use this list carefully. My information is only as good as the representative with whom I spoke. Production process and ingredients could change so this list is time sensitive***
  17. 1 point
    I am a first time poster....I am feeling very frustrated, I am 4 month gluten free post diagnosis via blood test and biopsy. Most of my digestive problems bloating, heartburn and occasional ‘C’ have completely resolved. However I am still having problems with tingling/numbness/pain in legs and feet. Also some occasional zapping in the head. I am taking high doses of b12 as my reading was 320 at diagnosis but is now over 1000 and also vitamin d and magnesium. Also I am df and mainly just eating unprocessed food. Although I have to eat out occasional for work and social reasons I think I have only been gluttened once in 4 months. I have seen a neurologist who did a nerve conductor and few other tests and did not see anything wrong. Is there anything else anyone can recommend? I am 37 with two young children and was always very active so would love to think there is some light at the end of the road. Also I am meant to be running Nyc marathon next year so constant feet pain not ideal! It is so frustrating when you feel like your doing everything you can but your not Improving! If people have not got any advice would be great to hear from people who had neuropathy clear up after more than four months. Did it clear up suddenly or gradually etc? happy new year one and all and thanks for reading
  18. 1 point
    Our church doesn't offer gluten-free communion wafers, so I always have to pack a little container in my purse with gluten-free crackers. It feels really isolating considering communion is a community of people coming together to take part in something very symbolic and important to us as Christians. It's not so bad when the tray is passed and there are individual cups of juice, but sometimes they have a wine glass for dipping at a table (cross contamination). Anyone else feel sad about communion changing for you as a Celiac? I'm guessing many churches now offer gluten-free elements. Just venting a bit...With Celiac I am daily reminded of my disease and constantly having to deal with it in social settings. It's very tiring.
  19. 1 point
    This is really helpful! Thank you!!!
  20. 1 point
    Hi! I am sorry that you are still struggling. You can not rule out celiac disease for a variety of reasons. First, you did not show an Immunoglobulin A (IgA) test result which NVSMOM pointed out years ago that is used as a control test when trying to diagnose celiac disease. If you are IgA deficient, your IgA-type celiac tests would be invalid (will not work). Then there are 10% of celiac who are seronegative. These celiacs never test positive on the blood tests. Intestinal biopsies obtained via an endoscopy usually confirma celiac disease diagnosis. An endoscopy can help rule out other GI issues like Gastritis, SIBO, Crohn’s, H. Pylori, etc. It sounds like you have a confirmed wheat allergy which is different from an autoimmune response. You can be allergic to wheat and still have celiac disease too. Since you have autoimmune thyroiditis, your risk for celiac disease is high. Remember, ALL, yes ALL, celiac disease testing requires you to be on a full gluten diet! As some with celiac disease, autoimmune Gastritis and Hashimoto’s, depression and anxiety can occur if any of them are flaring (active). Many celiacs suffer from allergies and various intolerances unique to each individual. Remember too that celiac disease can share the same symptoms as other illnesses like Crohn’s. Those should be ruled out. Finally, you might try the Autoimmune Paleo Diet (is also gluten free), if you can not access a Gastroenterologist. It has claimed to have helped those with various autoimmune disorders. Certainly testing out food for the short term can not be harmful. A small study was done at Scripps in San Diego with Crohn’s and Ulcerative Colitis patients. Within six weeks (no change in medications) they achieved a 73% remission. That is amazing! Now they are testing Hashimoto’s patients. Again, very tiny studies. Here is USA government publication: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/ Here is more about the Hashimoto’s study. Of course no company wants to support food as a cure, so this group crowd funded: https://autoimmunewellness.com/aip-hashimotos-medical-study-results/
  21. 1 point
    My GI told me everything looked normal. I had to wait for the biopsies. My new GI has the latest and greatest scope. He could see and photograph my villi! Wow! I got a set of pictures on a repeat endoscopy five years after my diagnostic endoscopy. Of course the pathologist’s report also collaborated my GI’s findings.
  22. 1 point
    RX bars might work for you. They have very few ingredients. I don't know if they are available or ship to Switzerland tho. https://www.rxbar.com/shop/rxbar.html/ Edgymama had good suggestion there!
  23. 1 point
    A lot of good info here. https://www.makesauerkraut.com/fermented-pickles/ I use 1/2 to 3/4 cup of kosher salt per gallon of purified water, a handful of crushed garlic, a handful of bay leaves crumpled up, a bunch of dill, and Kirby cucumbers. A tablespoon or so of Crushed red pepper if you like a slight bit of heat. Remove the blossom end. Three days around 75 degrees on the counter and start checking. Put in the fridge to stop progression. I use an old one gallon rectangular Brita water filter because the top section holds the cucumbers under water and can hold 15 small kirbys.
  24. 1 point
    Celiac.com 04/18/2019 - Cases of type 1 diabetes have been on the rise in western countries, which suggests an environmental role in the development of the disease. Still, after decades of study, researchers have yet to nail down the factors driving the increase, and so they have no clear way to prevent new cases. A potential association that deserves closer scrutiny is one of environmental causes as a driver of diabetes, including dietary factors, such as gluten. At the moment, there is a great deal of focus on maternal and childhood dietary factors. To remedy the current impasse, researchers Maija E Miettinen and Suvi M Virtanen of the National Institute for Health and Welfare in Helsinki, Finland, cite the need for comprehensive prospective studies with carefully collected data to define and confirm associations. Only with such data can effective solutions be devised and tested. In a linked article, also in the BMJ, Antvorskov and colleagues investigated the association between maternal gluten intake during pregnancy and risk of type 1 diabetes in offspring. The authors analyzed data from the large Danish National Birth Cohort, covering about a third of all pregnancies in Denmark during the recruitment period of 1996-2002, in which more than 70,000 pregnant women reported their diet with a food frequency questionnaire. That analysis revealed that risk of type 1 diabetes in offspring increased proportionally with maternal gluten intake during pregnancy per 10 grams per day increase of gluten. Compared to women with the lowest gluten intake of under 7 grams per day, those with the highest gluten intake, who consumed 20 or more grams a day, had double the risk for type 1 diabetes development in their children. Basically, higher gluten intake during pregnancy meant higher diabetes risk for the children. However, that’s one study with good data. The authors stress the urgency to understand what is driving alarmingly fast-rising diabetes rates. People’s health, well-being, and lives are at stake. For that, further study is needed, and soon. Read more at BMJ 2018; 362
  25. 1 point
    To Frankenstein, a dish in the name of experimenting is quite common with food. I recently did something with funny results and lessons learned I think some might find amusing. So my concept was to make a gluten-free soft moist brownie and sugar-free. I have done this with thick nut butter like sunbutter before, and iffy results with thinner ones. But I wanted something moister, so I had some avocados >.>. Yeah this is where the Frankenstein reference comes from. But bit of a heads up, you want super ripe ones, as the flavor is less strong and they process better. Started with about 1cup mashed avocado in a food processor, 2 eggs, 1/2 cup (100g) each of Swerve Sweetener, almond meal, and cocoa powder, then 1/2 baking soda, 1/4 tsp salt 1tsp vanilla. THEN I melted a 3oz lakanto bar and mixed with 2 tsp coconut oil and poured it in and processed it all into a batter 8x8 parchment lined pan and baked 30min. Drizzled with chocolate and chopped pecans. The conclusion is the avocado made it fudgy and moist, and not dry. But the avocado flavor left a strong after taste, Covering with cinnamon for a Mexican chocolate brownie would be advisable. BUT this gave rise to a great revelation. take this simple base and use Kite Hill Cream Cheese instead next time! if the cream cheese flavor shows through like the avocado and keeps it moist the same these would be awesome. >.> The mind of a mad cook is crazy at times is amusing, we combine foods trying to use the texture aspects of one ingredient to improve the base recipe, and see how the flavors combine. Then see about coving or altering said flavors or subbing a similar textured ingredient to gain a better flavor.
  26. 1 point
    To All, This is good research! I had recently ran across the Kynurenine (KYN) pathway in my own research. It is now been shown as the pathogenic cause of IBS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ And even earlier than that it was linked to Celiac disease Circa 2007. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1941917/ this research confirms that AGA IgG in Schizophrenia patients are linked conditions in Celiac disease. https://insights.ovid.com/crossref?an=00006842-201610000-00007 Maybe other's will run across this research and bee helped. I am never surprised when I find earlier research has been done on a topic but always surprised nobody seems to know about it....yet it has been a couple plus years since the earlier link to AGA IgG and Schizophrenia symptom's in Celiac's has been established as related. This is not medical advice but I hope it is helpful.. .and it doesn't take another 10 + years (Circa 2007) for doctor's to recognize this connection... of the Kynurenine (KYN) pathway as a regulator of immune response in Celiac's. Posterboy,
  27. 1 point
    Well, they aren’t permanent. They’re semi-permanent and you have to have them done every couple weeks because they are glued to each lash and they fall off with your natural lashes. They take about an hour to do each time you have them filled, but your first appointment takes at least two hours. It’s really relaxing to do them and you don’t have to fuss with makeup as much because you always have big doe eyes! I like doing it. It’s my little self-care thing. And they’re done by a trained cosmetologist. I’m sure that there are lots of sketchy places you could avoid, but there are also a lot of really awesome lash artists out there and if they know what they’re doing the extensions will be beautiful and won’t damage your natural lashes or your eyes!
  28. 1 point
    Celiac disease is an autoimmune condition that affects the intestines. ... the harmful effects of the disease by following a gluten-free diet such as Paleo.View the full article
  29. 1 point
    I am confused. Both her TTG IgA and TTG IgG were both over 100 at diagnosis? And she is actually IgA deficient? If she is not making IgA antibodies, I think her TTG IgA test would be invalid. To be really IgA deficient, her test result would be close to zero and not just below the lab range. Can you clarify? Has she ever had the DGP IgA or the DGP IgG tests? Some researchers think they are better for determining dietary compliance. What about the EMA? Any other bio markers (e.g. anemia) that have improved (or not)? Five years is a long time. Enough to to heal if on a gluten diet (my repeat endoscopy was at five years and revealed healthy, healed villi). She is either getting gluten into her diet or she has refractory celiac disease which is not good and highly unlikely. I bet gluten is still in her diet. Cooking is not that difficult if you food prep and freeze. (Watch a few you tube videos on the subject.). Look at it this way, you have 10 years or so to be cooking for her. She is going to be tethered to her kitchen for her entire adult life. Teach her to how to shop, prepare and store food, so that she always has safe and healthy food to eat. It was not that long ago when everyone was cooking food from scratch. Maybe even non-celiacs should think about eating real food. We have an obesity and diabetes crisis probably due to processed foods. But that is another topic! Again, a reset on the Fasano diet can help her to heal fast and will give you the chance to determine if and how gluten could be getting into her diet. (Again....oats is the likely culprit). Hang in there!
  30. 1 point
    If you let her eat Cheerios and , I am not sure which oats she is getting- maybe she is getting small exposures? Maybe something else she is eating is not gluten-free? I have seen people over the years who really think they are gluten-free but they are eating something that actually is not. For example, a guy ate corn flakes every morning. He thought they were just corn, sugar, salt and a bit of preservative/ flavoring . He didn’t realize the malt sweetener has gluten. I have also seen kids who think “ if I can eat that at home, I can eat that at school or a friends house”. . They don’t realize that not all Rice Krispies treats ( for example) are gluten-free.
  31. 1 point
    Did you know that some celiacs react to oats, even oats grown and harvested and shipped from dedicated fields? Did you know that there is a lot of controversy over mechanically sorted oats? Oats might be the one thing that is keeping her TTG elevated. https://www.glutenfreewatchdog.org/news/gluten-free-watchdog-updated-position-statement-on-oats/ Celiac disease is like a chameleon where symptoms can ebb and flow. If she has fatigue and some minor headaches, she very well might have active celiac disease.
  32. 1 point
    Seriously? Sour dough with “reduced gluten content” is NOT for Celiacs. and this nonsense that something is used for a non- food purpose is silly. Water is used as a coolant in coal and nuclear power plants- I guess we shouldn’t use it?
  33. 1 point
    Great advice. Just remember that you are the customer. Know that each pharmacy with Walgreens is slightly different — meaning the staff. Some may be more helpful than others. If you can not get help to your satisfaction, find another pharmacy or choose a different Walgreens. Also, try to go in during slower times. For example, I have gone into our hospital pharmacy on Sundays. They are only filling prescriptions for hospital patients and the pharmacists assigned to walk in traffic are bored!
  34. 1 point
    My pharmacy does not list the name of the maker on the bottle or anywhere the paperwork that I get however, I use a locally owned pharmacy & they are super excellent about calling the manufacturer & checking. I still double check it when I get home or before I leave the pharmacy. You can look up the maker online by the color, shape & markings on the pills. Here's a link. You don't know the inactive ingredient so just leave that blank & ignore it. https://pillbox.nlm.nih.gov Once you ID the pill, then you can see what the ingredients are.
  35. 1 point
    They tell you what was tested - skip how it was tested - just know it was tested correctly. At the end it willl tell you it tested less than 5 PPM . And that is great! Or, the few things that test as containing gluten , are usually share with the public
  36. 1 point
    same... i did not do the biopsy... either way, I can not do gluten and I feel cured, not being on Gluten... and my skin rash that I had for over 40 years is clear... Gluten Free is the way to Be...
  37. 1 point
    I am so sorry that traveling is so difficult for you. By the way, your English is excellent!
  38. 1 point
    I don't eat anything unless it's whole food or labeled gluten free, certified gluten free is best. I do get my nuts from Nuts.com, they have a gluten free section, labeled gluten free but not certified. They ship super fast and everything is fresher than I've ever tasted nuts before, except those I picked and shelled myself. You can sign up for their newsletter and they have discounts from time to time and free shipping over a certain amount. Be careful of any freebies they offer from time to time, they are sometimes gluten free, but sometimes not.
  39. 1 point
    I think you would find it just as difficult in some ways in the US to get a celiac disease diagnosis. Unfortunately, you must be consuming gluten for any celiac test (blood or biopsy) to work. But you can live gluten free even without a diagnosis. You can find a pharmacist who can insure your medications are gluten and lactose free, but you might be required to pay the full cost or go to a compounding pharmacy. You can travel on an airplane internationally. I have done so and have carried my own food or you can fast during the flight. I wish you well.
  40. 1 point
    I think it was 30% of the American population has the gene? But only 1 out of 133 have the disease. BUT research does show that having a first-degree relative with the disease increases your chances to 1 of 22 of getting it in your lifetime. The only way to truly know is to do the gluten challenge and get blood tested and scoped with a biopsy. But if getting through 8-12 weeks of eating gluten is too painful you might just have to accept you have it. I would get a new doctor btw, celiac is serious if you ignore the diet and get glutened constantly. The disease evolves, it compromises your intestines, weakens your body, and can really mess with your immune system. I got secondary AI diseases like UC, food allergies, and gluten ataxia causing brain and nerve damage. We have had members get all kind of secondary issues from intestinal ruptures to cancer. Staying gluten-free though and healing will lead to a more normal life, our bodies just think the gluten protein is a foreign invader and go on the attack when it detects it.
  41. 1 point
    Celiac.com 03/12/2019 - Some doctors routinely conduct celiac testing in irritable bowel syndrome (IBS) patients, but it is not currently accepted practice. A team of researchers recently set out to compare the rates of undiagnosed celiac disease in a large group of patients both with and without IBS. The research team included AE Almazar, NJ Talley, JJ Larson, EJ Atkinson, JA Murray, and YA Saito. They are variously affiliated with the Department of Medicine, the Division of Gastroenterology and Hepatology, the Department of Health, Division of Biomedical Statistics and Informatics, and the Department of Immunology at the Mayo Clinic in Rochester, Minnesota, USA, and with the Faculty of Health and Medicine at the University of Newcastle in Callaghan, New South Wales, Australia. The team performed their family case-control IBS study at a single US academic medical center. They accessed serum and DNA, and conducted tissue transglutaminase (TTg) immunoglobulin A, followed by indirect immunofluorescence testing for endomysial antibodies with positive or weakly positive TTg results. The team defined patients with celiac disease only when both results were positive. They used χ and Fisher's exact tests to compare celiac rates between the two groups. The team looked at serum samples for 533 cases and 531 control subjects. Eighty percent of study subjects were women, with a median age of 50 years. A total of 65% of cases and none of the control subjects met the Rome criteria for IBS. Overall, the team found no difference in rates of celiac disease between patients with IBS and patients without IBS. Based on these results, the researchers see no need for universal celiac serologic or genetic testing in patients with IBS. Stay tuned for more information on IBS and other issues related to celiac disease. Read more at: Eur J Gastroenterol Hepatol. 2018 Feb;30(2):149-154. doi: 10.1097/MEG.0000000000001022.
  42. 1 point
    Hello All, I wanted to share with you some information that I have learned about my nutrition while on the Fasano Gluten Contamination Elimination Diet (https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40) for alleviation of my dermatitis herpetiformis. Because I have started on this diet not for any gut-related problems, but specifically for DH, I am not only adhering to the strict guidelines of the diet as laid out by Dr. Fasano and his team, but am also avoiding or severely restricting any foods high in iodine as well, which can aggravate DH. So I am therefore ALSO eliminating all dairy products (which I already did six or seven months ago), all seafoods of any kind (both fish and, above all, seaweeds), and will be restricting my egg consumption to two or three a week, along with eliminating my multivitamin (which, like almost all of them, contains 100% of the US RDA for iodine, 150 ug.) In addition, I am choosing to avoid all dried beans, peas and lentils, although they are allowed on the Fasano Diet, due to the potential for cross-contamination with gluten-containing grains. So, this leaves me with not an awful lot of foods to chose from. My starches are white potatoes and sweet potatoes, with lesser amounts of white rice, yuca (cassava root), and plantains (cooking bananas). My proteins are limited to (lean) unprocessed beef, chicken, turkey and pork. And with vegetables (which must be fresh, whole and unprocessed), I need to totally avoid asparagus, spinach, rhubarb, broccoli and cauliflower (due to high iodine content), and carefully limit my intake of green leafy vegetables. All fresh fruits are OK, as are nuts in the shell. Avocados are a particularly good source of a number of otherwise limited nutrients --- don't overlook them! Well, after eight days now on this diet, I was curious just how it might stack up nutritionally, as I could imagine that I might be missing some important nutrients. So for three days I actually recorded the weight and type of each food that I ate, representing what I expect would be a good cross-sectional sample of my diet going forward, then added up all the nutrients in those foods, as listed on the very useful website NutritionData.Self.com --- https://nutritiondata.self.com/facts For most nutrients, I am actually not doing bad at all. Despite eating meat every day (which was not my norm before this), my protein intake is not at all high, but I seem to be getting just marginally enough protein. The same goes for fats, although it almost feels like I am using MORE in the last week than before. But where I am falling noticeably low is in a few key vitamins. Most of them are good to very good (A, C, K, Thiamin, Riboflavin, Niacin), but my Vitamin K intake is around 65% of the RDA, and both my Vitamin E and Folic Acid intakes are only around 50% of the RDA. The bad ones are Vitamin D intake, now exactly zero (as it is admittedly for many people), and Vitamin B12, where I hover around 10% of the RDA. Calcium and Magnesium are also low --- about 75% for magnesium, but only 26% for calcium. I realized that on this restricted diet I would be low on Calcium, Magnesium and Vitamin D, so I did already buy and start using a supplement from Costco that contains each of those three nutrients. I would have thought with the daily meat intake that I'd be fine for Vitamin B12, but while that vitamin is only found in animal products, it is not very high in lean meats --- more so in eggs, dairy products, organ meats and seafood. So I may have to take a supplement for B12 as well, although it is true that most people store several years worth of B12 in their liver, which however diminishes with age. The upshot here is that I would HIGHLY recommend for anyone going on the Fasano Elimination Diet to seek out the assistance of a dietician in formulating a properly balanced diet, particularly if they are also further restricting certain foods that are allowed on the Fasano Diet for other and more individual-specific reasons, The work and effort I put in just to analyze my three days diet was rather extensive, and I don't know how many others would have the patience and wherewithal to do that. But even as a rather nutritionally aware person, I was still surprised by a few of the nutritional 'holes' that my current diet contains.
  43. 1 point
    I can only speak from my own experience but when first diagnosed I would break out in new lesions within an hour or two. I would also get a feeling like I was falling even if I wasn't. Let me know I was in for a real rough time for a while. However as time went on, and I suspect the antibodies left my skin, the time between a glutening and a breakout became longer and the lesions less severe. I have now been gluten free since the early 2000's and just get a tiny blister or two. DH can make us even more sensitive to tiny amounts of CC than folks without DH. The more whole unprocessed foods you can eat the better. Watch out for gluten in topicals while you have active lesions and if at all possible don't eat out until you are very well healed.
  44. 1 point
    I would not worry but..... Ennis was right about new “green” disposable flatware and dishes. Now they are using wheat. I would be interested to see if anyone actually tests this stuff.
  45. 1 point
    if you have celiac and you eat gluten, you will feel terrible and do damage to your body. there isn't any 'morning after' (for lack of a better term) tried and true remedy. if i am accidently glutened (and i am insanely careful, so this does not happen often anymore) i find that drinking plenty of water and long, hot showers make me feel better, but it doesn't leave until day 14. 14 days. ain't nobody got time for that. no matter what i try, it's naps and snacks for 14 days. then the fog lifts and my guts stop protesting. you will get better at avoiding gluten and cc by practicing being gluten free. i would eat whole foods (avoid processed while your guts are healing) and skip eating out for awhile until you get better at knowing how to determine which restaurants are safe and which ones don't give a crap if they give you the craps <see what i did there lolz) go to the coping page and read the newbie thread. there is much useful info there - more things to avoid than just bread - and ways to navigate this lifestyle. welcome to your new normal. pack a lunch, because if ya got celiac, every day's a picnic. literally.
  46. 1 point
    I, too, have been thinking about Barty lately and it was hard not knowing how she was doing. This is still a shock and difficult to hear, knowing how hard she worked to recover from Celiac. Her presence is sorely missed on here but I know I will never forget her. Rest in peace, dear Lady. You made quite an impression on us all.
  47. 1 point
    it's funny, because when i was first dx'd, everyone who didn't know much about celiac thought i had to eat a vegetarian diet. i was like: noooooo....... ? i had a 'not ideal' reaction to mayonnaise, (not anaphylaxic, though, ugh that must be terrible!) turns out i had a sensitivity to soy. and, some people are sensitive to veggies in the night shade family, whether temporary or permanent, it is a real issue. i had a terrible reaction to eggplant many moons ago - so much so that i have never tried to eat eggplant again. try doing the food journal thing and maybe an elimination diet. then just eat 'safe' foods <that you have no adverse reactions to) and then you can try adding other foods back in. you may have to wait until you are healed to reintroduce some things. good luck!
  48. 1 point
    Thyroiditis can mess with your stomach and can actually cause a weak positive result for the anti-tissue transglutaminase (tTG IgA and tTG IgG) which can cause intestinal problems. It is possible that your thyroid problem is affecting your health. That being said, there is a strong link between thyroiditis and celiac disease, so if you have a gluten intolerance, there is a chance celiac disease is the problem.... Keep in mind, we are not doctors here and are just commenting from experience. Do you know what celiac disease tests you had done? These are the medically accepted blood tests done for celiac disease: TG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA total serum IgA (a control test) AGA IgA and AGA IgG (older, less reliable tests that are not used as frequently now) You must be eating gluten (equivalent of 1-2 slices of bread per day) for 8-12 weeks prior to testing for them to be accurate. As it is, there is still a small chance of false negatives occurring. There is not an allergy to gluten. Allergies are IgE based, and as far as I know there is not an allergy to gluten. On the other hand, wheat allergies are not uncommon. Were you tested for food sensitivities by a naturopath or something? Those tend to look for IgG reactions (I think). Just be aware that the mediacl community does not accept a gluten sensitivity test as diagnostic. Right now doctors will only accept a positive response to the gluten-free diet for a diagnosis of non-celiac gluten sensitivty (NCGS). If you do have celiac disease or NCGS, you need to stop eating all gluten - no more "testing". Not all celiacs or those with NCGS, have an obvious reaction to gluten every time they consume it. Some have no obvious reaction at all but that doesn't mean that their body is not being damaged inside! I do not always have a severe reaction immediately when I eat gluten (by accident) even though I know I am a celiac. We have to be careful and protect ourselves. Right? So... you are wondering if you do not have a gluten sensitivity? Are you back to where you were (health wise) 8 months ago? If you are exactly back to where you were 8 months ago, and you were 100% gluten-free the whole time (except for an accident or two), then I would say, yes - there is a good chance that gluten is not an issue for you. On the other hand, if you are better than you were but have noticed new problems, then I would guess that the cause is a new source, like eggs, yeast or corn. Try cutting the listed sensitivities from your diet for 3-6 months and see how you feel then? Keeping a food and symptoms journal may help you pinpoint the problem foods. Good luck!
  49. 1 point
    It took me around a year and a half to see real improvement. It was like a switch finally turned on. I could again remember things, recall details and could finally find those words I wanted to use but would allude me. I was un-diagnosed for a very long time so it may have taken me longer. Colleen
  50. 1 point
    Well your not alone. I am also 5'4" and would be happy if I could get back to 112lb. I seem to stuck at 105. I was up to almost 115 but then had a job that was not a good fit for me and lost 10lbs. Putting it back is hard. One thing I have done in the past that worked for me (don't know how healthy it was) was eating Wylde pretzels. They are gluten and soy free and each bag had 900 or so calories, if I remember correctly. I would eat my regular meals but would open a bag in the morning and munch constantly on them over the whole day. With the extra almost 1000 calories a day I did gain a bit. At this point I am trying to gain with more healthy alternatives. I got some chocolate hemp protein powder and try to make at least one shake a day with whole milk and 1/2 banana. I make muffins with Pamela's mix, fruit and nuts and snack on those between meals. I try to make each meal as high calorie as I can by using lots of butter, whole milk, sauces etc. I also try to exercise more to try and gain muscle. There are some places I would rather not see more fat on. LOL Gaining weight can be very difficult for some people. I wish I had some more advice other than just the obvious get more calories.
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