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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
    Hi Trailblazer, No one can say for sure what will happen, but we can make some guesses. Celiac disease can affect people in many different ways, and there is no guarantee how it will affect a person. One of the problems untreated celiac disease can cause is malabsorption of nutrients. This can cause stunted growth and poor development of teeth and bone and brain. Ongoing consumption of gluten by a celiac can result in continual inflammation in the GI system. This can cause additional food intolerances to develop over time. Some of mine are dairy, nightshades, soy, strawberries, celery, oats, etc, etc. Other people have other food intolerances that crop up. These are sometimes lifetime food intolerances. Another biggie is gluten ataxia which can be caused by brain damage. Dermatitis herpetiformis (DH) is a skin condition that can happen and is not very pleasant to experience. There is a low chance of gut cancer also. There's also the potential for ongoing GI distress including pain, bloating, C and D, insomnia, brain fog, hair loss, low hormone levels, mental symptoms like anger, depression etc, joint pain, developing other AI conditions and just plain feeling miserable for years on end. The alternative is to go gluten-free and enjoy better health and live well. And most likely end up eating a healthier diet than most people do. Celiac disease is an AI (auto-immune) condition. It's a lifelong immune condition that doesn't go away. Every time they eat gluten they are damaging their bodies. Eventually that damage won't be repairable and problems will get worse. There is no upside for a celiac to continue eating gluten.
  17. 1 point
    FYI! Certified gluten free foods (tested below 10ppm) are often made on shared equipment. Also, foods labeled gluten free (tested below 20ppm) can also be made on shared equipment. Cumulatively, this could be too much gluten. i.e. If you use too many brands that all contain trace amounts of gluten then you could accumulate too much gluten, even if the individual product amounts are below accepted levels. Brands that use Shared Lines (gluten foods made on the same equipment as gluten-free foods) Alter eco chocolate Amy’s Arrowhead Bird's Eye frozen veggies Blakes shepherd pies Bolthouse Farms Breyers ice cream Classico Color kitchen cupcake colors Conagra Country life vitamins Drews Erewhon From the ground up Gin Gins Grandy oats Haagen-Dazs Hellman's Imagine Foods Jeff's Natural Jalapeno stuffed olives Kind Kraft foods Lance Late july Lotus Foods Lovely Candy company Nature's Bakery Nature’s Path Nestle Organic Valley Orrington farms broth Outshine popcicles Pacific Foods Purdue/Harvestland Chicken San-j Simple Mills Stubbs Unilever Vans Wild Planet fish Natural Sea Salmon So-delicious **NOTE** This is not an exhaustive list. My information is only as good as the representative with whom I spoke. This list is time sensitive. However, I am FINALLY getting well after cutting out ALL brands that use shared lines!
  18. 1 point
    Hi Oranges and Melons, While going gluten-free may not resolve all your brain symptoms, it may help. In some people celiac can attack the brain cells causing a condition called gluten ataxia. Those people sometimes have UBO's (unidentified bright objects) on an MRI of the brain. The other gotcha is lack of certain nutrients. Our brains are over 90% fat and they need fats to operate. Celiac can impair the ability to absorb fats. That's a bad thing for a brain. We are all literally fat-heads! The malabsorption typical of untreated celiac disease can impair absorption of B-vitamins which are important for nerve cells to function correctly. Guess what else our fat-heads are made of? That's right, nerve cells! So it's a 2 fisted whammy on our brain function. Anyway, they say that nerves are slow to heal. So don't expect immediate improvements. Getting used to eating gluten-free is a bit of a challenge for most people. It is even possible to make mistakes and eat things with gluten in them at first! But try to keep the mistakes (glutenings) to a minimum. Every time our immune system is triggered to respond by gluten, it will launch an immune attack. That immune attack can go on for weeks to months, depending on the person. So every mistake can set us back for quite a while. Surprisingly, it turns out there are lots of foods to eat besides gluten. Some of us have been eating gluten-free for over 10 years and haven't staved to death yet. And after a while (varies by person) the old gluteny foods are not as appealing either. Congrats on your diagnosis. Now you can plan on starting your gluten-free journey and improving your health.
  19. 1 point
    I did this a few days ago. Thanks for posting. Please write your rep today!!!!
  20. 1 point
    As @cyclinglady said, being super strict was necessary for me to make any headway against the rash. I have been gluten-free for 4 years, and I still get dinged every once in a while when I try a new brand/thing. In my first year gluten-free, I was not very careful about CC with my gluten-eating roommates, and was fairly relaxed about what packaged foods I would buy - I didn't worry about stuff saying it was gluten-free unless it was something like bread, pasta etc. I ate out, but didn't really take many precautions aside from saying I was gluten-free. Many celiacs live like I did in that first year with apparent success. However, I was still getting sick quite regularly, and my rash didn't improve much. While I felt much better than I had before being gluten-free, I was aware that I could be doing much better, and so I slowly started doing all the "paranoid" things I'd laughed at when I first started out. Basically, I did a Fasano-ish diet (I allowed myself a few things that I assumed would be low risk), then added stuff back in. This strategy helped me identify a few things that were causing issues. The whole thing is a bit infuriating/time consuming, but worth it IMHO. Interestingly, I've actually found that a lot of my problems were from single ingredient, non-processed foods. One of the worst culprits turned out to be the store brand maple syrup I was eating intermittently (didn't always buy the same brand, didn't use maple syrup every day). Presumably, they might run the maple syrup on the same line as "table syrups" or molasses (could contain gluten) Point here is that nothing is sacred, with the exceptions of fresh produce, eggs, plain/fresh meat, most plain dairy (ie. milk, butter, cheese). Keep track and look for patterns. It might be something really dumb that you don't think about.
  21. 1 point
    @Maddy1 Consider browsing through the DH section of the forum if you suspect it might be the cause of your head rash and since you have celiac disease. I think you will find that those with DH who have successfully treated their DH are SUPER careful. It seems that 20 ppm threshold might be too much for them (it can be too much for many celiacs without DH too). They avoid processed foods and do not eat out for the most part). Drastic? It works for them. Look at Squirmingitch’s and Apprehensive Engineer’s postings specifically. They are active forum members and have been successful without medications, if I recall. Consider trialing the Fasano diet for a month or so too. https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1 Following this diet will help you determine if you were getting too much hidden gluten exposure into your diet. Also, make sure you are getting follow-up care: https://celiac.org/about-celiac-disease/treatment-and-follow-up/adult-pediatric-follow-up-checklists/ I feel better avoiding processed foods and I never eat out except at dedicated gluten-free restaurants. This works for me. My last repeat endoscopy revealed a healed small intestine. 🤗
  22. 1 point
    Here is some bad news. The celiac blood tests were designed to help diagnosis celiac disease, but not to monitor dietary compliance. Still, they are the “only non-evasive tool in the tool box”, so many doctors use them after diagnosis. Take the advice you have been given, and see if your symptoms improve. If not, you might need to see your doctor. You could have a concurrent illness, but it sounds like gluten is still getting into your diet. Try to be very strict for a while to see if it helps. Do not eat out or eat food prepared by others unless you are watching. Stick with no -processed foods as much as possible. No oats. No kissing hubby unless he brushes his teeth. Same for your children. One member, is a preemie doctor with tiny four kids, had the entire house go gluten free. Her kids were making her sick with their toddler kisses and trail of gluten crumbs. You will find your way. 😊
  23. 1 point
    This varies from different people, how you have the place set up, etc. But yes touching bread/flour/gluten then your food can make you sick. Gluten is a protein smaller than a germ, it can not be killed or sanitized with bleach or chemicals. Think blood and a crime scene CSI, it can get stick in scratched cutting boards, scratched pots and pans, colanders etc. Flour should be avoided period in a shared house, that poof from opening a bag or tossing something in it can go airborne for hours and settles everywhere as dust that can make you sick. If you inhale it will get stuck in the mucus in your throat/nose and eventually go down your throat and make you sick. In a shared house you need to have dedicated toasters, condiment jars (crumbs here can make you sick and sticking that knife back in after touching bread), and I would say some dedicated cookware and tubberware. Keep your Gluten-Free stuff on top shelves in the fridge and the pantry to prevent crumbs from falling on them. Few life hacks I learned, Butcher Paper/Freezer Paper, put it down on the counter when you fix your food for a safe prep surface, Mark your dedicated cooking utensils/pots with color like red and store/wash separate, I used my own set of Nordicware microwave cookware and splatter covers when I did have a shared house, and food service gloves are a lifesaver Honestly I kept getting sick and moved to a dedicated Gluten-Free house. Double check the newbie 101 section and this other post, another thing your family needs to consider is this is genetic, your kids need to be tested every year as they might develop it. https://www.celiac.com/forums/topic/91878-newbie-info-101/ https://www.celiac.com/forums/topic/123965-gluten-free-food-alternative-list-2019-q2/
  24. 1 point
    Hooperman, If stress is your main problem try drinking some Holy Basil tea. Here is an article about it. https://vitanetonline.com/forums/1/Thread/394 I used to drink it myself for my morning tea...but when I found when my stress(ors) got better in my life I found I didn't need it as much. But Holy Basil has a known calming effect...I was also doing it at the time to help my blood sugars. ...it does this it is thought by/helping decrease Cortisol (stress hormone) levels in the body. And we all know what stress does to us...so anything that can help your stress ...could help your depression/anxiety etc. in theory. I know it helped me....this is not medical advice but I hope this is helpful. Posterboy,
  25. 1 point
    hoooperman, I had a lot of your problems with anxiety and depression when I was diagnosed as a celiac. Here is a nice thread about this topic. https://www.celiac.com/forums/topic/122774-does-it-cause-anxiety/?tab=comments#comment-997188 I will also quote/post some other links that might help you. I highly recommend Magnesium Glycinate and a good Enzymic B-Vitamin see this link about the role Vitamins/nutrition play(s) in depression. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/ Here is their paragraph on B-complex's. B-Vitamins are known to be low in Celiac's and to help Celiac's deal with stress and anyone really. quoting B-complex vitamins "Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood." I find people don't know to take B-Vitamins (twice daily or with meals) because they are water soluble and leak out.. .and taking B-Vitamins only once a day keep you half low in them. I recommend the same for Magnesium Glycinate .. you will notice a difference in about a month with the Magnesium and about 3 months with the B-Vitamins. You should also have your Doctor check your Vitamin D levels. ...my Vitamin D levels was also low at the time of my Celiac diagnosis, and even today I struggle to keep my Vitamin D levels up. ..unless I am spending most of my days outside ...for example. Here is the research on Magnesium. https://www.sciencedirect.com/science/article/pii/S0306987706001034 If I could recommend any one or two things for depression it would be to take Magnesium Glycinate 2 to 3 times ad day and take your co-enzyme B-Vitamins 2 to 3 a day ...so your body reset's it's stress clock! I hope this is helpful but it is not medical advice. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  26. 1 point
    Hi Olivia, Welcome to the forum! First off, don't be scared of the endoscopy. When I had mine they did both endoscopy and a colonoscopy at the same time. The GI called it a two-fer. That was good because they found and removed some polyps. I never would have known they were there otherwise. I was out for the procedure so it was like falling asleep and waking back up seconds later and it was over. I didn't even know it was done. Since they are both invasive procedures it is not a bad idea to get them done in one hospital visit instead of two. That saves time and money. The endoscopy is considered the actual proof of celiac damage. They check for evidence of an immune attack on the small intestine lining. In theory the antibodies could be in the bloodstream but not attacking the small intestine. So the endoscopy proves celiac damage from antibodies. There are some other blood tests you could ask for first though. There are tests called DGP IgA and DGP IgG that he can do. Also the total serum IgA is good to do so they know if your immune system actually makes normal amounts of IgA antibodies. Without IgA production, the IgA tests are useless. Some people just don't make IgA. The results you got do seem to indicate you are making IgA antibodies though. Another thing you could ask for is a test of your vitamin and mineral levels. These are sometimes out of whack (low) in celiac patients because of intestinal damage. You could get a gene test also but it doesn't prove celiac. Around 30% of people in the USA have one of the celiac related genes but only 1% get celiac. I am guessing you got the full celiac panel but didn't post all the results? Anyhow, please don't go gluten-free yet as that would mess up any upcoming tests results.
  27. 1 point
    Yes, you still need endoscopy and biopsy because you do not have symptoms and the level of antibodies is not clearly discriminative, it is borderline positive. https://doi.org/10.1177/2050640619844125 https://www.ueg.eu/quality-of-care/guidelines/ Al-toma, consultant gastroenterologist
  28. 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.
  29. 1 point
    I'm more than a little late to the game here, but for future reference, "valor energético" means "calorie count" (literally "energy value"). I imagine it's zero or close to zero for a cup of mate.
  30. 1 point
    Hello. If you have Texas Tailgate Chili in your stores it is Gluten Free according to their website. It has no beans and no ingredients that may have gluten. I have tried it and no issues so I have my rv and house stocked with it. Rest of family likes it also.
  31. 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.
  32. 1 point
    Thanks this was helpful. I love my PCP she is wonderful luckily my appointments are happening pretty quickly so I’m not too worried.
  33. 1 point
    04/22/2019 - A gluten-free diet can improve symptoms of schizophrenia in certain patients, new research suggests. In the small pilot study, Deanna L. Kelly, PharmD, professor of psychiatry, University of Maryland School of Medicine, Baltimore, and colleagues studied the effects a gluten-free diet in schizophrenia, especially in patients with elevated gluten antibodies. Kelly and her team set out to determine whether a gluten-free diet would improve psychiatric symptoms in this subgroup of patients with elevated AGA IgG. They found that schizophrenia patients with elevated gluten antibodies, specifically, elevated antigliadin antibodies (AGA IgG), who followed a gluten-free-diet for 5 weeks saw a greater reduction in negative symptoms compared counterparts on a non-gluten-free diet. "With a gluten-free diet, we do have the potential to improve psychiatric symptoms, particularly negative symptoms, which is a symptom domain with a high unmet clinical need," said lead investigator Deanna L. Kelly, PharmD, professor of psychiatry, University of Maryland School of Medicine, Baltimore. Currently, there are no good treatment options for negative symptoms of schizophrenia, "so this could be a treatment for people if they have these antigliadin antibodies," Kelly said. Nearly One-third of Schizophrenia Patients Gluten Intolerant Elevated AGA IgG may be present in about 30% of all patients with schizophrenia. The antigliadin antibody is not related to the antibodies seen in celiac disease, which affects roughly 1% of the overall population. Schizophrenia patients with elevated AGA IgG show substantially lower positive schizophrenia symptoms than those who test negative no AGA IgG. They also have higher levels of kynurenine, a metabolite of the amino acid L-tryptophan. Kynurenine has been linked to schizophrenia pathology, and to other conditions, Kelly noted. The tryptophan kynurenine pathway also has important links to neurotherapy. Strategies for treatment of schizophrenia are still largely "one-size-fits-all." The team's study began largely after a single 2-week gluten-free trial in two people with elevated AGA IgG and schizophrenia showed "robust symptom improvements, particularly in the domain of negative symptoms," so we wanted to do a feasibility study and enroll more patients," Kelly told reporters. The team's findings were presented at the first annual Congress of the Schizophrenia International Research Society (SIRS) 2019. Read more at Medscape Medical News
  34. 1 point
    Celiac.com 04/11/2019 - Dieting, a word commonly used by people who are in the process of consuming food in a regulated and monitored manner. We normally equate someone who is dieting to someone who wants to lose weight and restricts their food intake to achieve a desired outcome, for example to prevent certain diseases or deal with obesity. For many reasons, the purpose of dieting has evolved. Currently there are many popular diet plans available, such as the gluten-free diet, keto diet, paleo diet and detox diet. But today we are only going to discuss the difference between two more widely used diets, which are the gluten-free and keto diets. What is a gluten-free diet? A gluten-free diet is generally a diet that explicitly excludes gluten from meals. This diet is normally used to treat people with celiac disease, or those who have gluten sensitivity and experience discomfort and symptoms after consuming gluten. Gluten is found in many foods that we consume today. It is found in wheat and other grains such as oats, rye and barley. Gluten has a glue-like property when mixed with water. For example, the gluten found in wheat bread flour helps create a sticky network that allows bread to rise and gives it a chewy texture. Unfortunately gluten is used very widely in various food additives and ingredients, which makes it difficult to avoid. What is a keto diet? A keto diet focuses on consuming only high-fat, moderate-protein and low-carbohydrate foods. It involves a substantial reduction of carbohydrate intake which is replaced with fat. The purpose of the keto diet is to put your body into a metabolic state known as “ketosis.” What happens in this process is that your body will start efficiently burning fat for fuel instead of carbohydrates. What should we avoid in a gluten-free diet Gluten is widely used during food production making it difficult at times to maintain a gluten-free diet. Although gluten is safe to be consume by many people, those with gluten sensitivity should avoid it to prevent complications. Below are some basic foods that contain gluten, and some examples that may contain gluten (see Celiac.com's Forbidden List for more info): Baked goods - Cookies, muffins, cakes, pizzas, etc. Bread - All wheat-based bread. Pasta - All wheat-based pasta. Snack foods - Pre-packaged chips, roasted nuts, candy, pretzels, crackers, etc. Beverages - Flavored alcoholic drinks or beer. Cereals - Unless stated gluten-free. Other foods - Sauces, couscous, broth cubes. What can we eat on a gluten-free diet? However, even with limited food choices, there are many gluten-free options now available in markets. It isn’t that hard to adopt this diet as long as you keep an eye out for foods labeled with “gluten-free” or better yet, you can prepare home-cooked meals which will definitely be healthier. Below are foods that are naturally gluten-free: Fruits and vegetables - All types of fruits and vegetables are naturally gluten-free so eat away! Meats and fish - Avoid battered or coated meats or fish. Dairy - Products such as plain milk, plain yoghurt and plain cheese are gluten-free as long as it does not contain added ingredients. Grain - Rice, buckwheat, quinoa, corn, oats and tapioca, as long as labeled gluten-free. Starches and flour - Potatoes, corn, chickpea flour, potato flour, corn flour, soy flour, tapioca flour and coconut flour. Nuts and seeds Herbs and spices Spreads and oils - All butter and vegetable oils (some celiacs avoid canola oil as it's often grown in the same fields as wheat). Foods to avoid on a keto diet This diet restricts a substantial amount of carbohydrates in your body to ensure that only fats will be burned. Therefore, any type of food with a high carbohydrate content should be limited. Here is a list of high-carb foods that should be limited: Grains and starches – Pasta, rice, cereals, wheat-based products,etc . Sugary foods – Cake, candy, ice cream, fruit juice, etc . Fruits – All kinds of fruits (except limited portions of berries). Beans and legumes – Chickpeas, kidney beans, lentils, peas ,etc. Root vegetables and tubers – Carrots, sweet potatoes, potatoes, etc. Alcohol – Due to alcohol carb content, many alcoholic beverages are not recommended. Sugar-free diet foods – These food are often high in sugar alcohol and tend to be highly processed. What can we eat on a keto diet? As your body will only be focused to burn fats as fuel, you will require a substantial amount of fatty food. However, this does not mean to consume all the fried food you can find. In a high fat diet, you have to focus on consuming only healthy fat to still achieve your required nutrients. Your meals should be based around these foods: Fatty fish – Salmon, tuna, trout and mackerel. Meat – Chicken, steak, turkey, ham, sausages and bacon. Eggs – Opt for pastured or omega-3 whole eggs. Low carbohydrate veggies – Most green leaf veggies, tomatoes, onions, etc. Cheese – Unprocessed (goat, cheddar, cream, mozzarella or blue cheese). Butter and cream – Opt for grass fed. Healthy oils – Mainly extra virgin oil, avocado oil and coconut oil. Condiments – Salt, pepper or any herbs and spices. Benefits of gluten-free diet Obviously those who have celiac disease require a gluten-free diet, but even for those who don't a low-gluten diet can be beneficial. Excess consumption of gluten may lead to gut or other inflammation, which can result in bloating, stomach cramps or diarrhoea. Therefore, a gluten-free diet can be beneficial to anyone facing digestive problems such as bloating constipation and many other symptoms. It can help ease your digestive symptoms and reboot your digestive tract. Moreover, dropping gluten allows you to have more energy during your day. Eating an anti-inflammatory diet removes food stressors like gluten, sugary food and genetically modified food that will allow your body adrenals to come be reduced. This improves energy, reduces stress, and can aid one's emotional balance. Benefits of the keto diet Although it may sound scary to focus on consuming a high amount of fatty foods, and it may even seem to be in conflict with your health goals, it is actually beneficial in many ways. Burning only fats can help you drop a lot of weight quickly. This is because ketones suppress your hunger hormones which in return reduces your appetite. You will be able to go for longer periods without eating. Next, a keto diet fuels and feeds your brain. As our brain is made up of at least 60% fat, and ketones provide an instant hit of energy whenever you're burning fat. Consumption of essential fatty acids will also help to grow and develop your brain. Possible negative effects of gluten-free and keto diets As with all good things, there are sometimes bad things that come with them. Despite having a variety of health benefits, there are certain risks associated with both diets. First, you may be at risk of nutrient deficiency due to the elimination of too many foods. This can cause you, for example, to not consume enough fiber from traditional sources. Fiber also assists your body in the absorption of nutrients. Furthermore, the lack of fiber can lead you to have bowel issues such as constipation. Gluten-free and keto diets both eliminate many sources of fibre like wheat bran and fruits that promote good bowel movements. Constipation can cause serious issues if not dealt with. Conclusion Those with celiac disease or gluten sensitivity require a gluten-free diet, and don't have the luxury going off the diet—they must stay on the diet to maintain their health. It is always a good idea to consult a registered dietician before starting any major dietary change, and this is true for both the gluten-free and keto diets. Interestingly the keto diet is mostly gluten-free, or can easily be made gluten-free, so for celiacs who want or need to lose weight, it might be a good option.
  35. 1 point
    Bummer link went straight to subscription membership and log in. No free article available.
  36. 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!
  37. 1 point
    Yeah, if you understood correctly what the doctor told the husband, then the doctor is...not accurate. I like Flaming Idiot. Perhaps not politically correct, though. If the husband had no positive celiac antibody tests (there are more than one), and no villi damage with the endoscopy....then he doesn't have celiac disease right now. Assuming, as SquirmingItch said, that the doctor took plenty of biopsies, analyzed them under a microscope, and husband has been eating plenty of gluten for months preceding the testing. He might develop celiac disease in the future and should be tested on a regular basis. The genes...there are two major genes associated with celiac disease. They are called simply DQ2 and DQ8. Any given person has the possibility of having one or two copies of each gene. In the general population, 30% or more people have one or more copies of the DQ2 or DQ8 gene, yet only a small percentage develops celiac disease. There are a very few people who do indeed have celiac disease, but do not have either gene marker positive. If the other kids in this scenario indeed have no DQ2 or DQ8 genes, they would not need to be screened routinely for celiac disease. If, however, they seem to have symptoms then they should be tested anyway. Your friend should be screened for celiac disease since her child has been diagnosed, by blood antibody tests, even if she has no symptoms. Maybe by a different gastroenterologist!
  38. 1 point
    There is a new stool test that can help determine if gluten is getting into her diet. It might be worth pursuing. https://glutendetective.com/shop/ A review from a very reliable source: https://www.glutenfreewatchdog.org/news/gluten-detective-consumer-test-kits-for-detecting-gluten-in-stool-and-urine/ I did not ask, but does she consume any oats?
  39. 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?
  40. 1 point
    I second oats. Pure oats still cause issues for me, six years on. I had my blood tested a couple of years ago and despite what I thought were my best efforts, I found my ttg was at 87. So I met with a nutritionalist who encouraged me to stop eating out. Also, I redoubled my efforts in only choosing food that appears in the Gluten Free directory that Coeliac UK provides. Thankfully, my levels are much better now - last test, 14. And one last point - if I consume too much dairy, or do not cook my eggs properly, I am still prone to stomach discomfort and D.
  41. 1 point
    Ebutton, It could be a lot of things but two that come up a lot in my research is EBV disease as a common link to celiac disease. And Pellagra as a 2ndary condition to your primary celiac disease.... one can often bee confused for the other one. Here is an article about it --- I hope it helps you. https://www.celiac.com/articles.html/journal-of-gluten-sensitivity/journal-of-gluten-sensitivity-winter-2017-issue/a-differential-diagnosis-how-pellagra-can-be-confused-with-celiac-disease-r3989/ it is probably harder to treat the EBV but taking a B-Complex and maybe Magnesium as Magnesium Glycinate and a Vitamin D might help some of your other symptom's. Here is two good links about Magnesium and Vitamin D. https://medicalxpress.com/news/2016-02-vitamin-d-linked-eye-syndromes.html http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/ for a select group (subset) of the population we can have an inborn (genetic) pathway that cause systemic inflammation once it is broken. .... It the called the Kynurenine Pathway and is important for us to make energy and thus CFS and FM symptom's develop when some one has these genetic abnormalities. Here is an article about it . .. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3729338/ I hope this is helpful but it is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  42. 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...
  43. 1 point
    My blood test was normal and I had flattened villi. Unt, the blood tests are not always accurate. For the biopsy, you will need to do a gluten challenge which means you need to load up on gluten prior to the biopsy. If you have celiac, you will be in agony as I was. Having said that, however, the only difference between celiac disease and non celiac gluten sensitivity is damage to the intestine, you can go gluten-free and see if you feel better. If you have either, you’ll feel better within 3-4 days.
  44. 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.
  45. 1 point
    Celiac.com 03/25/2019 - Some researchers have suspected that myelin proteins may be involved in multiple sclerosis (MS). A recent report in Science and Translational Medicine, suggests that additional non-myelin-related protein may also play a role. Researchers examined protein samples from the brains of 31 people who had died from suspected or confirmed MS. They found that T cells from 12 people reacted to the enzyme guanosine diphosphate-L-fucose synthase, or GDP-L-fucose-synthase. The enzyme usually helps to process sugars that are crucial to cell function and communication, including the function and communication of neurons. Researcher Dr Roland Martin, from the University Hospital of Zurich, Switzerland, has helped to figure out which myelin proteins and peptides come under attack in MS, and which cells and immune molecules do the attacking. Paper coauthor Mireia Sospedra, of University Hospital of Zurich, suggests that “other auto-antigens might be involved in initiating the disease." She believes that the attack on this newly identified auto-antigen triggers tissue damage that exposes other myelin proteins that are likely targets for attack. Sospedra suspects that some variations in myelin protein structure might be susceptible to immune attack, and that genetic variation in immune cells might influence the body’s response to a given infection. She suggests that the offending antigens may differ between individuals, as the structure of our molecular machinery is genetically determined. Northwestern University immunology professor Stephen Miller, who did not work on this research, but has worked with Dr. Martin in the past, suggests that there’s likely not just “one particular virus or bacteria or environmental factor that triggers MS in every patient. There are probably many things that can trigger an autoimmune reaction against a particular infection," he says. "But the more antigens we identify that can contribute to the disease, the better." Researchers have pointed out that numerous autoimmune diseases seem to cluster in certain gene sequences. Multiple gene areas seem to correlate with numerous autoimmune conditions. Prior comprehensive genetic association studies have found 90 genetic areas associated with T1DM, celiac disease, multiple sclerosis, and/or rheumatoid arthritis. Celiac disease and MS sufferers share some things in common, including a tendency to develop 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. The connections between multiple sclerosis and celiac disease is a common topic of discussions on many forums. Read more at: medscape.com
  46. 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.
  47. 1 point
    Hi I just read your post about your two year old. The first time my seizures were detected were about 44 years ago. At the time it was diagnose as a seizure disorder. At that time you did not talk about. I always new there was something deeper going on... and I have done a great deal of research including coming across an article that research into food allergies was discontinued when anti seizure medication cam into play. I had my DNA test and I have marker for celiac disease. I had some tests done and the GI doc said it is likely I have celiac disease. I found your post when I was looking for an article posted on one of the celiac site on celiac disease and epilepsy and celiac disease. I was printed in the Journal of Neurology. I wish I had printed it. I talked about patients who have been diagnosed with epilepsy don't have any gut damage but it effect the brain. I started with DNA marker. I found experimenting on my own eliminating gluten and dairy and recently corn has been a huge help. Keto diet has been known to help with seizures disorders. I kept a journal of what I ate and how it affected my health emotionally, physically. I was able to find my triggers and eliminate them. Alcohol, Stress, Lack of sleep, Sugar, Caffeine, gluten and dairy and corn. As I got older, I also paid attention and tracking my dream and received a lot of answers. Best wishes you your daughter and family. At this point, with our food supply being tampered with I believe that DNA testing for Celiac Disease genes. If you have the markers, it doesn't mean you have celiac disease but the possibility is there... You would need to refer to you doctor, preferably one that has knowledge of Celiac Disease. It took me 46 years to get diagnosed.
  48. 1 point
    So I posted back in early February2017 about having some extreme brain fog, light headed, vision problems amongst other symptoms. I thought it was because I had started a strict gluten-free diet again (after eating carelessly for a couple months and being a celiac) and was possibly have gluten withdrawals or even cross contamination some how in my diet. I literally went to 3 different MD’s and even my Optometrist. And they all told me I needed to eat more and get better “quality” sleep. After a year of strict sleeping/eating schedules the symptoms never went away and it felt like this constant drunk state of going about my day. Finally I switched to a Holistic Doctor (I think that’s what type of Doctor he is). Anyways after the first appointment he pretty much knew what I had and sent my home with two take home tests. One for SIBO, the other for Adrenal Fatigue. I tested positive for both with extremely solid results. I always told myself I’d come back on this forum to share my info if I ever figured out what was wrong with me because no one seemed to know exactly what was going on and looked at me like I was some crazy lady making up stuff. I am one week on the Rx. and already feel so much better. My ability to communicate and focus in conversations is much better. I literally felt buzzed when talking before and it took way too much effort to really even stay on topic with people. And even if I did stay on topic I couldn’t remember hardly what was discussed. As of right now my vision is still slightly off, even though my optometrist said I have perfect vision. It’s more so like the room has a hard time catching up with itself when I redirect my focus. But my energy is up and I can only assume my results will keep getting better with each passing day. I hope this helps someone who’s trying to figure out what’s going on with themselves.
  49. 1 point
    Untreated celiac disease can be life-threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders (like amenorrhea and spontaneous abortions). Fertility may also be affected. Some researchers are convinced that gluten intolerance, whether or not it results in full-blown celiac disease, can impact mental functioning in some individuals and cause or aggravate autism, Aspergers syndrome, attention deficit disorder (ADD), and schizophrenia. Some of the damage may be healed or partially repaired after time on a gluten-free diet (for example, problems with infertility may be reversed). Celiacs who do not maintain a gluten-free diet also stand a much greater chance of getting certain types of cancer, especially intestinal lymphoma. Untreated celiac disease can cause temporary lactose intolerance. Lactose is a sugar found in dairy products. To be digested it must be broken down by an enzyme called lactase. Lactase is produced on the tips of the villi in the small intestine. Since gluten damages the villi, it is common for untreated celiacs to have problems with milk and milk products. (Yogurt and cheese are less problematic since the cultures in them break down the lactose). A gluten-free diet will usually eliminate lactose intolerance. However, a number of adults (both celiacs and non-celiacs) are lactose intolerant even with a healthy small intestine; in that case a gluten-free diet will not eliminate lactose intolerance. Celiacs often suffer from other food sensitivities. These may respond to a gluten-free diet--or they may not. Soy and MSG are examples of food products that many celiacs have trouble with. However, it should be noted that these other sensitivities, while troublesome, do not damage the villi. As far as we know, only gluten causes this damage.
  50. 1 point
    Yea, sometimes I find myself turning a corner in the house and bumping into the doorjam--like I misjudged where the doorway was! Other little things too, like bumping my wrist into the corner of the counter, and having my left leg (the side affected w/neuropathy) not rise above the floor enough when I walk sometimes. These things have definately come to my attention this past year. On the positive side--Since my anemia has cleared up, I don't bruse as easily
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