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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
    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.
  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
    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. 😊
  19. 1 point
    Funny thing, there is a place just outside my city, that is a small BBQ place. They are all gluten free and never even mention it anywhere. Their daughter who works there is Celiac so the family makes sure no gluten is in the building. >.< My issue is the BBQ sauce they use contains corn and it is in everything and I am allergic to that lol. I also considered BBQ, but my town has 5 BBQ places that do catering So I would be out of luck there so I went with the concept of a truck that does Paleo with Stir Fry and another menu for burgers with my own Gluten-Free Bun recipe and sweet potato fries, along with perhaps offering breakfast like my Omelet on a stick or breakfast bowls. Right now I am considering another option to start in to raise funds. Sort of funny how our bodies rebled on us due to an issue with food proteins yet ironically our life starts to revolve food to keep us safe and oddly enough in some becomes a passion.
  20. 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.
  21. 1 point
    This is really helpful! Thank you!!!
  22. 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/
  23. 1 point
    Our church recently started serving allergen free communion bread, so everyone can safely take communion.
  24. 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.
  25. 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!
  26. 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.
  27. 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,
  28. 1 point
    I love something called Inotyol, it's a super fat ointment with zinc oxide among other things. Zinc oxide works a lot better on my skin than strong cortisone, especially inotyol. No side effects besides stains on fabrics. Often used on babies as diaper ointment. It's like an extra layer of thick skin that cools and calms( perhaps the lavender oils work?) And protects. Waterproof too. To get it on the entire body I usually mix it with some other oil, preferably camelia oil since it kind of rebuilds the skin and calms it down too. But most often I use it pure only on the most severe patches, and pure camelia on the rest. There's also something called "skin food" from urtekram I think, which litterly is food for the skin. Unfortunately it doesn't last long and is quite expensive compared to inotyol. I don't have DH, I have atopic dermatitis which I've learnt is severely triggered by gluten. It feels more like a really bad sunburn, one with blisters and scaling. hence more burn and pain than itching, and some mosquito bites on top of it. But perhaps zinc oxide mixed in thick fat will give someone else a we bit of relief.
  29. 1 point
    Your symptoms could be attributed to celiac disease or any number of illnesses. The only way to find out if it is indeed celiac disease is to get tested. It starts with a simple blood test. Make no changes to your diet. All celiac disease testing requires you to be on a gluten diet. http://www.cureceliacdisease.org/screening/ You can develop celiac disease at any age: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635160/ A “wait and see approach” is not good in my non-medical opinion. Why wait? For you to become sicker? Consider some new doctors! If you are stuck with yours, document in writing your request to be tested for celiac disease. Nothing like a potential lawsuit to get a doctor to take action. Remember, you are the customer!
  30. 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.
  31. 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
  32. 1 point
    Celiac.com 04/13/2019 - The word microbiota is a fancy medical word. It means the vast numbers of bacteria that inhabit the digestive track. These bugs, most of which were once thought to be only a nuisance or worse, are now known to be a very important part of the overall health of the gut, indeed, of the entire body. So what does this have to do with celiacs and the gluten intolerant? Wheat For many thousands of years wheat has been a major part of the human diet. It was easy to grow, cultivate and domesticate. It was quickly found to be highly nutritious with lots of calories, to have most of the amino acids the body needs to make protein, many vitamins and minerals, and last but not least, a considerable amount of fiber to keep the bowels regular. Just as important, wheat could be baked in many ways and stored for later use. So, wheat became the backbone of the diet for much of the human race. It was the perfect food. And, alas, it was too perfect to last for the celiac patient and the gluten intolerant. Celiac and Gluten It was only 60 years ago that the cause of celiac disease was uncovered. In the late 1930s a Dutch physician, began to treat celiac children with a wheat free diet. During WW II when there was famine and no wheat available in Holland, many of these sickly children became even more remarkably and miraculously well. They then became sick once again when wheat became available after the war. It was quickly found that the gluten protein in wheat was the culprit. An abnormal antibody in the blood was discovered. The tissue lining the small bowel was found to be badly damaged when wheat and gluten were eaten. But there was one additional thing in wheat that has more recently been discovered. Prebiotics! The Prebiotics—Oligofructose and Inulin These 2 food fibers are prebiotics. A prebiotic is not a probiotic. A probiotic is a live bacteria usually found in yogurt, other dairy products and pills. For a fiber to be called a prebiotic it must be tested by research and found to produce distinct health benefits in the gut and, indeed, throughout the body. They occur when these specific fibers are consumed which, in turn, causes the vigorous growth of certain beneficial bacteria in the gut. It is these healthy bacteria that produce the health benefits. These unique food fibers are found in many plants throughout the world. In plants consumed by humans they are present not only in wheat and barley but also in onions, garlic, yams, leeks, asparagus, bananas, chicory root, Jerusalem artichoke, and even in dandelions. However, it is only wheat and barley that contain gluten. All the others are gluten-free. In the 1990s it was found that wheat supplied 70-80 % of the prebiotics in the American diet. However, this information was just recently rediscovered (1). The Health Benefits of Prebiotics This has been a remarkable story. In just over 20 years a huge amount of medical research has uncovered a dramatic array of prebiotic induced health benefits in both animals and humans. This data has just been recently reviewed and highlighted in an extensive, state-of-the-science review on prebiotics (2). The key findings in this 63 page review are that when prebiotics beneficially change the bacterial makeup of the gut, certain health benefits occur. The following occur as measured by medical research: Increased calcium absorption and stronger bone density Enhanced immunity as measured by research techniques Better colon digestive and bacterial balance Improved regularity, bulking and stool softness Improvement in leaky, permeable bowel with reduced toxin absorption Enhanced appetite control through hormone regulation Reduced intestinal infection The following are tentatively considered to occur. Reduced risk of obesity and type 2 diabetes Reduced risk and/or improvement of intestinal inflammation such as Crohns or ulcerative colitis Reduced risk of colon cancer These are remarkable findings. Were a drug developed that produced these health benefits, it would be a worldwide sensation. Yet, these benefits are available to most people if they include a significant amount of these plant fibers in their diet and/or take a supplement. The Diabolical Celiac/Gluten Dilemma We can now study the bacterial composition of the gut with remarkable new, genetic techniques. What has been found in the celiac person and also in anyone who follows a gluten-free diet is that the bacterial makeup of the gut deteriorates significantly. These adverse changes seem to be associated with the reduction of prebiotics in the diet. It is also likely that this change in the bacterial makeup in some people can lead to digestive symptoms. So, what might be the answer? Certainly, increasing the consumption of these prebiotic-rich but gluten-free foods is a positive first step. The goal should be to consume up to 8 grams of the oligofructose and inulin prebiotics each day. A prebiotic supplement might also be useful in order to reach this goal. The bottom line is that for most of us, a gluten-free diet by itself is not enough. The second part of the dietary gluten-free equation is to replace the prebiotics lost when wheat is removed from the diet. This can be done by ingesting enough prebiotic-rich but gluten-free foods and/or with prebiotic supplements. References: 1. Jackson FW (2010) Effects of a gluten-free diet on the gut microbiota and immune function in healthy adult human subjects-comment by Jackson. Br J Nutr Sept; 104(5):773 Epub 2010 May 14 2. Roberfroid M, Gibson GR, Hoyles L et al (2010) Prebiotic effects: metabolic and health benefits. Br J Nutr Aug; 104 Suppl 2: S1-63.
  33. 1 point
    My diagnosing GI called my result a “weak” positive. A few weeks later, my biopsies confirmed a Marsh Stage IIIB which is moderate to severe patches of villi destruction. I did not have any GI symptoms at the time either. I guess my body adapted. Five years later, I had a repeat biopsy and my villi were healthy! The DGP is really specific to celiac disease. The TTG could be raised by her thyroid, but I have not seen the DGP as an indicator of any other Autoimmune disorder other than celiac disease. Jane Anderson, author of this article is a reliable source: https://www.verywellhealth.com/celiac-disease-blood-tests-562694
  34. 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!
  35. 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.
  36. 1 point
    Most kids on this forum who have had very high TTG results have seen those come down within a year or so. (You can browse the kid’s section). If your daughter’s TTG is not coming down, most of us on the forum would assume that she has had repeated gluten exposures. Another reason could be another autoimmune issue (AI) brewing, but this is not very common. What are the risks? Of course there is cancer, but that is rare. She could have another AI. Like many of us, we have developed additional AI issues since our celiac disease diagnosis. The most common are Hashimoto’s and Type 1 diabetes as they share common genes. She could have osteoporosis like me and I did not find out until I started getting fractures! Building bone is critical as she becomes a teen. She could have Refractory celiac disease, but that is very rare and I have seen only one case reported in a child. She could be a non-responsive celiac, and those patients have discovered that despite their best efforts, they were getting gluten exposures (see last link). With the additional information you provided, I would take all oats out of her diet until her TTG result comes down. Back in the day before the gluten-free craze and all the gluten-free processed foods, celiacs were advised not to eat oats. Even now, countries like New Zealand do not recommmend oats. https://www.coeliac.org.nz/eating-gluten-free/what-about-oats Canada has their own advice: https://www.celiac.ca/oats-statement/ Later, US researchers recommended purity grown oats for most celiacs but not all. They also recommend waiting at least six months (when antibodies levels are down) before trying. Lately, old timer forum members have been commenting on increased gluten exposures compared to the days without gluten free processed foods. Even the Fasano diet cuts out most processed foods, including oats and other grains when a patient is not healing. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/ I guess you get the picture that oats should be taken out of her diet for now. Celiac disease will not kill your daughter right away, but is very serious. It is as serious as lupus, Crohn’s or any other autoimmune disorder. Children used to die from it. Others had bodies that adapted, but eventually it caught up. (I have a friend who was diagnosed as a child and told that she would outgrow it. She never did. She did become asymptomatic for a few decades. She was rediagnosed at age 50 and has a lot of health issues.) Consider the Fasano diet as Karen suggested. It gives a celiac time to reset so that she might be able to eat more gluten-free foods like oats without issues. It is a lot to think about. I am glad your daughter has such caring parents. You will figure this out!
  37. 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.
  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
    If the test report summary says “The sample tested below the lower limit of quantification for the assay used of 5 parts per million of gluten” that’s good! It means the test could not detect any gluten. There might be a teeny, teeny, tiny amount so small that the test could not detect it but it probably is truly gluten free. If there were 1 or 2 parts per million it would be very unusual for such a tiny amount to hurt someone with celiac. The complete test reports may list Extraction 1 and Extraction 2, again if those are <5ppm (which means less than 5 parts per million) that is good. Hope this helps, if not just let me know what needs more explanation.
  40. 1 point
    Welcome! Have you had a repeat endoscopy since your original diagnosis? Any repeat blood testing? That should be done to rule out active celiac disease. It might be something other than celiac disease.
  41. 1 point
    I am so sorry that traveling is so difficult for you. By the way, your English is excellent!
  42. 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.
  43. 1 point
    When was the last time you had follow-up testing for celiac disease? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ I would suggest testing to rule out a celiac flare-up. If the results look good, see a GI for further evaluation. You can have concurrent autoimmune issues (like Crohn’s which also is systemic and can affect your joints as well as your gut). I wish you well!
  44. 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.
  45. 1 point
    See you in the morning, dear Barty! I may have missed this message for a long time, but to depart and be with Christ is eternal, you are still there and I am coming one day thanks to Jesus! Dee
  46. 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.
  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
    Consider also that what is being described here by so many may well be an ataxia. Ataxia is a neurological disorder caused by damage to the cerebellum - the part of the brain that controls gait, balance, swallowing, speech, etc. . It can have many causes but is found in both celiac and gluten sensitivity patients. Those with gluten sensitivity appear to be particularly susceptible to this and gluten exposure (even a tiny amount) can do irreversible damage to the brain. I have ataxia and all of the symptoms that are mentioned here. I have a serious gait problem that is always present. I have been ordered to be gluten free by three separate neurologists to date. We have several people with ataxia on this forum. Some are diagnosed with gluten ataxia, others with celiac ataxia or autoimmune ataxia. Whatever, it is essentially all the same thing. I am rather passionate on the subject of 'just a little' - cheating in other words. With this kind of damage always a possibility with celiacs - why would anyone take the chance? Claire
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