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Showing content with the highest reputation since 04/20/2019 in all areas

  1. 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.
  2. 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!
  3. 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.
  4. 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!
  5. 2 points
    hmm, that explains why I always have the urge to grab a club and bang something with it......lol
  6. 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 😛
  7. 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.
  8. 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
  9. 1 point
    Well, I would think your GI doc would want you to have been eating gluten before both the blood test and the endoscopy . That said, this is how my experience went down: I had symptoms and was misdiagnosed for years and years. I met a new friend who suggested going gluten free. I did so about a year before changing doctors and getting tested. My GI doc didn’t care that I was gluten free because he didn’t think anyone was completely gluten-free. I tested negative. He had me have the chromosome test and I tested positive. He had me have a endoscopy as a part of a colonoscopy that he was doing anyway (because I was that age) and he was surprised to find damage consistent with celiac. That is how I was diagnosed. I later found out that my great grandfather had died as a result of celiac, and had two cousins who got rashes from bread. GI sent me to a dietitian who I educated about the gluten-free diet. She didn’t charge me for the visit. I think she was supposed to teach me about it. But really, you ought to be on gluten while being tested. You need accurate results.
  10. 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!
  11. 1 point
    Gluten Free Facilities Ancient Harvest Badger lip balm (Look for gluten free label. They produce some products in another facility) Bakery on Main Better Body Foods Bob’s Red Mill Bush’s beans Cannon Fish Carnation Evaporated Milk Carrington Farms Coconut/Ghee Choice tea Crunchmaster Crackers Dakota Grass Fed Beef Derma-e Endangered Species Chocolate Enjoy Life Everyone Soap Fischer's honey Food Should Taste Good Fourth and Heart Ghee Gluten Freeda Gluten Free Pantry Glutino Green Mountain salsa Green Valley Dairy/Cream Cheese Hillary's Allergen Free Foods Hodgson Mill Gluten Free Honeysuckle turkey Hope Hummus Jollytime popcorn Kettle Brand Chips King Arthur Kinnikinnick Foods La Croix sparkling water Libby's Pumpkin Lil'l critters vitamins Lundberg Malk Minute Rice Musselman's Nick's Sticks Once Again Nut butters Organicville Pamela’s Products Polaner fruit spread Purely Elizabeth PUR gum Red Gold Tomatos Schar Skippy natural no stir peanut butter Sky Valley Foods Success rice Tessemae's Thousand Hills Beef Tinkyada Udi’s Gluten Free Waterloo sparking water Wholesome candy Wholeme clusters Wyman's frozen fruit Xochitl Dedicated gluten free lines—shared facility Blue Diamond (crackers only) Jason’s (toothpaste only) Country Archer Nuts.com (separate part of the building) Walden Farms ***Please use this list carefully. My information is only as good as the representative with whom I spoke. Production process and ingredients could change so this list is time sensitive***
  12. 1 point
    EMAIL YOUR US REPRESENTATIVE TODAY IN SUPPORT OF THE GLUTEN IN MEDICINE DISCLOSURE ACT OF 2019 Please personalize the sample letter pasted below. Email this letter to your local representative. A state-by-state directory is available at: https://www.house.gov/representatives?fbclid=IwAR3eNMLYkKJCJ52NLkbcZ7wqwGf9NafcHq-p9ydg7RZpvFNuz5ezQhhSv5I Here's a link to the bill: https://www.congress.gov/bill/116th-congress/house-bill/2074/all-info#cosponsors-content Sample letter: Cosponsor H.R. 2074: The Gluten in Medicine Disclosure Act of 2019 Dear [Name of your representative]: According to the Mayo Clinic, the rate of celiac disease has almost quadrupled over the past 50 years. Celiac disease is a serious, genetic autoimmune disorder in which ingesting gluten causes damage to the villi of the small intestine. It affects nearly 3 million people in the United States. In comparison, Alzheimer’s disease affects approximately 2 million people. The only treatment is the total elimination of gluten-containing products, including wheat, barley, and rye sources. For some, failure to avoid these can lead to life-threatening complications. Currently, this is nearly impossible to determine the presence of gluten in prescription medicine. In 2004, the Food Allergen Labeling Consumer Protection Act required packaged food labels to identify all ingredients containing wheat and other allergens. This requirement does not extend to prescription drugs. After repeated efforts to shed light on this issue, the FDA released draft guidance in 2017 encouraging drug manufacturers to disclose the presence of gluten. While some manufacturers have taken this step, it has not been implemented consistently. This leads to anxiety of not knowing whether or not your medicine is causing more harm than good. That is why Representatives Tim Ryan and Tom Cole introduced the Gluten in Medicine Disclosure Act, which will make it easier to identify gluten in prescription drugs. This legislation would require drug manufacturers to label medications intended for human use with the list of ingredients, their source, and whether gluten is present. A gluten-containing drug that does not meet these requirements would be considered misbranded under Section 502 of the Federal Food, Drug, and Cosmetic Act. This labeling will allow concerned consumers to know, for example, if the starch in their prescription drugs comes from wheat or corn. For the nearly 3 million Americans living with celiac disease, that small distinction is an important one. Please join other members in cosponsoring this important piece of legislation to make it easier and safer for individuals with celiac disease or gluten sensitivity to make informed purchases of needed medications. For more information or to cosponsor, please contact Rachel Jenkins (rachel.jenkins@mail.house.gov) in Congressman Ryan’s Office or Shane Hand (shane.hand@mail.house.gov) in Congressman Cole’s Office. Sincerely,
  13. 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. 🤗
  14. 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/
  15. 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.
  16. 1 point
    Well I was seeing a psychologist for 20 years, on zoloft, seroqueal, depokote, adderal and a few others. After a few years gluten-free and taking Liquid Health Neurological and the Mega Energy supplement in combination with Magnesium, and Vitamin D I find I no longer needed most of them. I also take CBD to deal with this odd depressive aspect that led to suicidal thoughts but when I worked that into my daily routine I found I am happy go lucky and just sort of roll with life and what ever it throws at me. I still have a pessimistic outlook on life but the wallowing in depression and sadness is gone. Take what posterboy said, many of the issues stem from nutrient absorption issues. B-vitamins, magnesium, healthy fats your brain needs to function etc. Supplementing, eating whole foods, and a gluten free diet with healing will resolve and lessen many issues. Do not stop taking your meds for while though, I had to wean off them and there was severe withdrawal. At the very least you might be able to lower the dosage in a few years, but everyone is different and the underlying causes of your issues need to be addressed. You can look up various symptoms for each b-vitamin, magnesium, deficiencies and see if it rings any other bells. Also some foods can trigger issues in people due to a sensitivity, intolerance, or chemical issues. I had a few foods that would make me flip out to Hyde Mode on people and break things. So keep a food diary and with what you eat, when, and your moods, and how your feel at different points of the days. Look for patterns and rotate your diet. Some odd triggers for me were Red 40 which resolved but I still have effects to aspartame, and asuflame with mood swings. This is not medical advice, I am not a doctor, just my personal experience.
  17. 1 point
    Hi Hoooperman, I am sorry to hear you are feeling poorly. Yes, celiac disease can cause depression. There may be multiple reasons for this depression to happen. Lack of vitamins and minerals that our bodies need to function and heal well, ongoing symptoms, adrenal stress, gut disbiosis, etc. Most of these problems can resolve on the gluten-free diet though. As our gut heals it begins to absorb nutrients more efficiently. So we begin to get more of the critical vitamins and minerals we need. And our gut symptoms tend to decrease also. I suggest you have your vitamin and mineral levels checked by a doctor. Knowing which ones may be low or borderline can be helpful. Supplements may help but whole foods are the best source for nutrients. Recovery from celiac damage varies quite a bit. You may recover quickly or it may take a few years. It can really help to completely keep all gluten out of your diet. Some people find dairy is also a problem for several months.
  18. 1 point
    I bring my own bread up to the altar with me and my pastor blesses it as 'the body of Christ, given for you' - then they have little glasses of juice/wine. the pastor we have now has a son diagnosed with crohns, so he understands special needs diets. but even our previous pastors were ok with it. it's symbolic - we're not *really* drinking wine, anyway. we were out of town for Christmas one year, and it was Christmas eve candle light communion service. I took my bread up, and the server blessed it. but, they had a community cup, and there was no way I was dipping. I just faked the motion lolz, the only one who noticed was the lady holding the cup. o, and I always bring a few extra pieces of gluten-free bread - my brother never remembers to bring his and if there's anyone else who needs it, they don't need to skip the sacrament I figure: God made me this way, so he understands.
  19. 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.
  20. 1 point
    This is really helpful! Thank you!!!
  21. 1 point
    Ditto cycling lady on everything, and more so on the paleo diet. If you get done with testing, full gluten diet, and scopes, I would suggest a the Paleo Auto Immune diet or at the very least a paleo diet. If you have one Autoimmune issue your highly likely to have more. I treat my Celiac, and UC with a paleo diet and even took it to keto macros with low carb and high fat/protein to get it all under control. Funny how I was forced to move to the diet with lactose intolerance, then celiac, followed by corn and whey allergies then pancreas issues resulted in me not handling carbs. Everyone is different with their issues, after the diagnosis process, start keeping a food diary and do a elimination diet. Build your new safe food menu around what works and eliminate what makes you feel bad. To this day I still feel better supplementing B-vitamins, Vitamin D, Magnesium, and taking CBD/Hemp and pumpkin seed protein to regulate my system for best mental performance. Again everyone is different and finding what works for you might take some time but can help eliminate fog, and increase your ability to function more normal.
  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
    I bought the Nima tester. An electronic antibody based gluten detecting machine. Highly accurate. Cap'n Crunch tested positive for gluten, as did Frosted flakes. Cereals that have tested gluten free so far are: Cookie Crisps, and the Peanut Butter and Chocolate version of Cocao/Fruity Pebbles.
  25. 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.
  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
    As long as they are going down, you should be happy. The celiac blood tests were meant to help diagnose celiac disease, but not to monitor the gluten-free diet. However, it is the only non-evasive “tool in the toolbox” for now. You can expect for those numbers to take a year or so to come down. It all depends on how well you do on the diet and how your body responds. Everyone is different! Welcome tomthe forum.
  31. 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.
  32. 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,
  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
    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.
  35. 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.
  36. 1 point
    Celiac.com 04/12/2019 - In this 4-part Series, we’re going to look at the world of gluten sensitivity, what the current science tells us, the frustrations gluten sensitive and celiac patients often experience, and how to use the science in getting healthier. Part 1: Why the Tests are Often Wrong Part 2: Why Don’t I Feel Great on a gluten-free diet: Cross-Reactive foods Part 3: Why Don’t I Feel Great on a gluten-free diet: the Intestinal Milieu Part 4: Why Don’t I Feel Great on a gluten-free diet: Invaders in the House Many of us believe that the toxic peptides of gluten found in wheat, rye and barley may detrimentally affect any tissue in the body and are not restricted to the intestines. As a matter-of-fact, one of the ‘mantras’ of the Gluten Sensitivity Network comes from an 8-year old article: “That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.(1)” There is a key word in this statement which I suspect emphasizes the Author’s message and sets the tone for this article (and this network movement). That key word is ‘principally’. Is Gluten sensitivity ‘principally’ a disease of the small intestine? Point-blank answer-no, it is not. For every Gluten sensitive patient with the symptoms of an enteropathy (classic celiac disease), there are 8 more with no GI symptoms(2, 3). And the importance of recognizing this? Unfortunately, too many doctors will tell their patients that if the intestinal symptoms are not severe, or if there is no advanced intestinal damage (total villous atrophy), then the patient does not need to be vigilant in avoiding gluten exposure at all costs(4). Many patients are advised to follow the World Health Organization or Food and Agricultural Organization Codex Alimentarius gluten-free diet, which allow up to 0.3% of gluten per 100 g of protein in foods, whereas others follow a strict GFD with no detectable gluten. However, trace amounts of gluten may be responsible for persistent symptoms in some patients with celiac disease. Up to 75% of patients with persistent symptoms despite a World Health Organization or Food and Agricultural Organization Codex Alimentarius gluten-free diet will improve when put on a ‘‘no detectable gluten’’ diet(5). We know that for gluten-sensitive patients, eating gluten will cause inflammation in the intestines, and often in other parts of the body(6, 7, 8, 9). The importance of ‘quieting down’ the inflammatory cascade from gluten exposure? Mortality in celiac patients is highest (6-fold higher) in those not adherent to a gluten-free diet. Non-adherence to a gluten-free diet was defined as eating gluten once-per-month(10). Vigilance is paramount. You can’t be a little pregnant. There is no convincing evidence that you can have a little gluten if you have gluten sensitivity. The ‘conundrum of gluten sensitivity’ is when patients know they have a problem with wheat, their doctors run the standard blood profile, and one of two things happens: -IgA anti-transglutaminase or anti-endomysial antibodies come back negative(11), or; -IgA anti-transglutaminase or anti-endomysial antibodies come back negative and anti-gliadin, or anti-deamidated gliadin antibodies come back positive and the doctor tells the patient “it’s okay to eat wheat because the tissue antibodies are negative”. The patient is left in a state of confusion. They don’t WANT to give up wheat. After all, they believe it’s a staple of life. And their doctor says it’s okay to eat it. Yet they know they don’t feel as well when they eat it. So many will rationalize “Oh well, it must be the stress of my life making me feel bad”, and they order their bagel. That’s the conundrum. Where’s the problem? The problem is the test. Gluten sensitivity is a systemic autoimmune disease with diverse manifestations(12). Celiac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. And yet, this enteropathy, ‘one of the most common lifelong disorders in both the U.S. and Europe(13), receives the lion’s share of focus to the point of ignoring other manifestations. Auto-immune disease, the 3rd leading cause of morbidity and mortality in the industrialized world(14), is ten times more common in a gluten sensitive enteropathy than in the general population(15). The correlation is undeniable. The exact mechanisms of how this correlation manifests is being investigated intensively. What we can say, with a good deal of research behind us, is that the toxic peptides of gluten may act as a trigger in the development of the auto-immune mechanism (the immune system attacking our own tissues). Traditionally, doctors do not recognize this connection and wait for the accumulated damage from the immune system attacking our tissue (our thyroid, or our brains, or our skin, or…), they wait until the damage is extensive enough that there are obvious symptoms, and then we receive a diagnosis of an auto-immune disease (celiac disease, Hashimoto’s thyroiditis, type 1 diabetes, systemic lupus, inflammatory bowel disease, inflammatory skin diseases, ….)(16). Thus, the burden on society imposed by gluten sensitivity is difficult to overestimate. Earlier identification might result in earlier treatment, better quality of life and an improved prognosis for these patients(17). The diagnosis of gluten sensitivity has been proposed to include not just intestinal damage (celiac disease), but also gluten-reactive patients without intestinal lesions. From the skin (dermatitis herpetiformis, psoriatic arthritis, alopecia areata, dermatomyositis, cutaneous vasculitis,), to the muscles (inflammatory myopathies), to the brain (gluten ataxia, altered neurotransmitter production, schizophrenia, anxiety, depression, attention deficit disorders,…) to the nerves (peripheral neuralgias, carpal tunnel syndrome, idiopathic neuropathies,…), and beyond. Pathology in response to gluten exposure can occur in multiple systems without evidence of intestinal damage(18-27). Now, what about this conundrum? The tests are negative, yet the person feels better when they do not eat gluten. Many studies have validated the sensitivity and specificity using anti-endomysial and/or anti-transglutaminase antibody testing to identify celiac disease(28, 29). This means that the science says these tests are very, very accurate. Then how is there a conundrum? Here’s the problem: the definition of celiac disease requires total villous atrophy(30). Not partial villous atrophy; not increased inflammation without any visible atrophy. The definition of celiac disease requires total villous atrophy. Thus, when researchers look at populations who have celiac disease confirmed by biopsy, and look to see how accurate the blood tests are, they come up with percentages above 95%, because they’re only including people who have total villous atrophy in their study group-because that’s the definition of celiac disease. If we were to expand the definition of celiac disease to include those with partial villous atrophy, or include those who currently show only the mechanism that wears down the villi (increased intraepithelial lymphocytes), then the sensitivity and specificity of anti-endomysial or anti-transglutaminase goes down, in some studies dramatically down, to as low as 27-32%(31, 32, 33, 34). So do we want to base our health guidance and decisions on blood tests that are limited to identifying celiac disease at its end stage of intestinal deterioration (total villous atrophy)(35, 36)? Or would we want to include testing that has a much bigger picture in mind and identifies gluten sensitivity inside and outside the intestines and at earlier stages? If we recognize the fact that gluten sensitivity may manifest as celiac disease, or it may manifest outside of the intestines(37), one of the ways of expanding our diagnostic range is to focus on whether or not our immune system is saying that gluten is a problem. We may know where the problem is manifesting, or we may not. But if our immune system is saying “We’ve got a problem here”, it is likely worth listening to. As a comparison, if your car is running fine on the highway at 60 miles per hour, do you listen when the immune system of the car (the dashboard gauges) says “we’ve got a problem here”, and the hot light has lit up, or do we say “the car’s running fine-I don’t see or feel any problem”, and keep driving? I think most would agree that is not a very wise move. The same is true for your body. You may ‘feel’ a problem; you may not. We’ll talk more about that in a future article. For now, the point I want to make is that we will benefit from ‘listening’ to what our immune system is saying to us. We just have to be able to hear what it’s trying to say. The problem is accurate communication The current blood test that every laboratory offers in looking for an immune reaction to the gluten fraction of wheat is elevated antibodies to gliadin or deamidated gliadin - every laboratory. And there are many studies that have shown that looking for elevated antibodies to gliadin is not as accurate in identifying celiac disease as looking for elevated antibodies to transglutaminase or endomysial antibodies. Why? Because sometimes the antibodies to gliadin are positive and the biopsy shows there is no celiac disease. And sometimes the gliadin antibodies are negative and the biopsy shows there is celiac disease. Thus, the consensus in the scientific community is that looking for antibodies to wheat (gliadin) is not sensitive enough when looking for celiac disease. You can’t rely on it. Now that doesn’t make much sense, does it? If the gluten peptide is the problem, why can’t we measure the immune reaction to it when other gauges on the dashboard are hot? Two reasons: Researchers tell us it is “inappropriate” to compare gliadin antibodies against transglutaminase or endomysial antibodies because gluten sensitivity can exist without villous atrophy. Thus the gliadin antibodies may be elevated (and often are) without recognizable celiac disease. It’s showing us a bigger problem than just Celiac disease. They’re not ‘false positives’. It’s the immune system saying “we’ve got a problem here” that is not currently manifesting in the intestines-it is likely manifesting somewhere else, such as in the brain or the nervous system(38). Identifying antibodies just against the fraction of gluten called gliadin is not thorough enough in looking for an immune reaction to gluten(39). Amino acids are the building blocks of protein. When we eat protein, any protein, it’s the job of the digestive system to break down that protein into 1, 2, or at most 3 amino acid peptides that are easily absorbed into the blood stream through the ‘cheesecloth’ of the intestines. When someone has gluten sensitivity, the gluten molecules in wheat, barley and rye are not digested into small enough molecules to easily fit through the cheesecloth, be absorbed into the blood stream, and they remain in larger peptides, sometimes very large peptides. These large peptides, called macromolecules, trigger the immune system to say “these are not good for me(40, 41)”. An exposure to a large peptide on a rare occasion would not likely have initially been a problem. But with pancakes for breakfast, a sandwich for lunch, pasta for dinner, toast for breakfast, a sandwich for lunch, croutons on the salad at dinner, day in and day out, eventually you’ve got a hot light on the dashboard that is reaching the critical stage(42). Then ‘boom’ your engine overheats and you begin to notice symptoms-perhaps in the intestines, perhaps in the joints, perhaps in the skin, perhaps in the skull (depression, anxiety, headaches), perhaps fatigue,….. So let’s get back to the large peptides left in the intestines due to an inability to digest the gluten molecule. We know there are many peptides of gluten result from poor digestion(43). One study identified over 60 putative peptides of gluten(44). Yet the current blood tests only test for one - gliadin. Studies have said that gliadin is the primary toxic peptide. But, only about 50% of celiac patients have antibodies to the gliadin peptide of gluten(39). The rest of the celiacs don’t. They have antibodies to other peptides of gluten(45). This is the reason for the conundrum-you test for it, the test only looks for antibodies to gliadin, the test comes back negative, and yet you ‘know’ you feel better off of gluten. It’s the test! In that example, the person does not react to the gliadin peptide-they are likely to be reacting to a different peptide of gluten. Why don’t laboratories test for other peptides of gluten? Good question. I do not know the answer to that. Some of the studies on this go back to the mid 1990’s. Probably a supply and demand issue for commercial laboratories. Well, no longer. There is a new blood test, looking at 12 different peptides of gluten-not just Gliadin. You can go to www.cyrexlabs.com or to my web site www.theDr.com to read more about this test. Looking at antibodies to 12 different peptides of gluten (including gliadin) will certainly increase the detection rate of the immune system saying “we’ve got a problem here with gluten”. We know celiac disease is due to sensitivity to the peptides of gluten found in wheat, barley and rye, many of the peptides in gluten-not just to gliadin. And now, another diagnostic tool has been added to your doctor’s repertoire assisting in accurately identifying gluten sensitivity with or without the serious end-stage of tissue destruction-total villous atrophy. And my personal prayer is that as a result of this expanded test looking for a reaction to gluten, we no longer miss those with earlier stages of celiac disease and gluten sensitivity thus being able to calm down the ‘fire in the belly’, the hot light on the dashboard, before the engine blows up. Before the diagnosis of attention deficit hyperactivity disorder, before the diagnosis of autoimmune thyroid disease, before the diagnosis of type 1 diabetes, before the diagnosis of migraines, before the loss of a pregnancy,…. and doctors will have the tools to truly guide their patients in increasing their health - tuning the engine before it blows up with a diagnosable disease. So our bodies can carry us through life purring instead of rumbling along. References: 1. Hadjavassilios, M., Gluten sensitivity as a Neurological illness, J Neurol Neurosurg Psychiatry 2002;72:560–563 2. van Heel D., West J, Recent Advances in Coeliac Disease, Gut 2006;55:1037–1046 3. Fasano A, Catassi C., Current Approaches to Diagnosis and Treatment of Celiac disease: An Evolving Spectrum Gastroenterology 2001;120:636-651 4. Goddard CJ., Gillett H R., Complications of coeliac disease: are all patients at risk? Postgrad. Med. J. 2006;82;705-712 5. Green PHR, Stavropoulos SN, Panagi SG, et al. Characteristics of adult celiac disease in the USA: results of a national survey. Am J Gasroenterol 2001;96:126–31. 6. Olesen M, Eriksson S, Bohr J, Jarnerot G, Tysk C. Microscopic colitis: a common diarrhoeal disease. An epidemiological study in Orebro, Sweden, 1993-1998. Gut, 2004; 53:346-350. 7. Gillet HR, Freeman HJ. Prevalence of celiac disease in collagenous and lymphocytic colitis. Can J Gastroenterol, 2000; 14: 919-921. 8. Koskela RM, Niemelä SE, Karttunen TJ, Lehtola JK. Clinical characteristics of collagenous and lymphocytic colitis. Scand J Gastroenterol, 2004;39: 837-845. 9. Dickey W, Celiac disease and the Colon, PRACTICAL GASTROENTEROLOGY • SEPTEMBER 2008 10. Corrao G, Corrazza GR, Bagnardi V, et al. Mortality in patients with coeliac disease and their relatives: a cohort study. Lancet 2001;358:356–61. 11. Hill I Salem W, Dirks M, Liptak G, Colletti R , Fasano A, Guandalini S, Hoffenberg E, Horvath K, Murray J, Pivor M, Salem W, Seidman E, Guideline for the Diagnosis and Treatment of Celiac disease in Children: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, J Pediatr Gastroenterol Nutr, Vol. 40, No. 1, January 2005 12. Hadjavassilios, M, Gluten sensitivity: from Gut to Brain. Lancet Neurol 2010; 9: 318–30 13. Fasano, A, Celiac disease-How to handle a Clinical Chameleon, NEJM 348;25 June 19,2003 14. Arnson Y, Amital H, and Shoenfeld Y, Vitamin D and autoimmunity: new aetiological and therapeutic considerations, J of Immunology, 2005, 175: 4119–4126. 15. Alaedini A, Okamoto H, Briani, C, Wollenberg K, Shill H, Bushara K, Sander H, Green P, Hallett M, Latov N, Immune Cross-Reactivity in Celiac disease: Anti-Gliadin Antibodies Bind to Neuronal Synapsin I, The Journal of Immunology, 2007, 178: 6590–6595. 16. Bland J., Understanding the Origins and Applying Advanced Nutritional Strategies for Autoimmune Disease, Metagenics Seminar Series, 2006 17. Green P, Alaedini A, Sander HW, Brannagan III TH, Latov N, Chin R, Mechanisms underlying celiac disease and its Neurologic Manifestations Cell. Mol. Life Sci. 62 (2005) 791–799 18. Marietta E, Black K, Camilleri M, Krause P, Rogers RS 3rd, David C, Pittelkow MR, Murray JA., A new model for dermatitis herpetiformis that uses HLA-DQ8 transgenic NOD mice, J Clin Invest. 2004 Oct;114(8):1090-7 19. Lindqvist U, Rudsander A, Boström A, Nilsson B, Michaëlsson G., IgA antibodies to gliadin and coeliac disease in psoriatic arthritis, Rheumatology (Oxford). 2002 Jan;41(1):31-7. 20. Humbert P, Pelletier F, Dreno B, Puzenat E, Aubin F, Gluten intolerance and skin diseases, Eur J Dermatol 2006; 16 (1): 4-11 21. Selva-O’Callaghan A, Casellas F, de Torres I, Palou E, Grau-Junyent JM, Vilardell-Tarrés M., CELIAC DISEASE AND ANTIBODIES ASSOCIATED WITH CELIAC DISEASE IN PATIENTS WITH INFLAMMATORY MYOPATHY, Muscle Nerve. 2007 Jan;35(1):49-54. 22. Hadjivassiliou M, Grünewald R, Sharrack B, Sanders D, Lobo A, Williamson C, Woodroofe N, Wood N, Davies-Jones A., Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics, Brain. 2003 Mar;126(Pt 3):685-91. 23. Hadjivassiliou M, Aeschlimann D, Grünewald RA, Sanders DS, Sharrack B, Woodroofe N, GAD antibody-associated neurological illness and its relationship to gluten sensitivity, Acta Neurol Scand. 2010 Apr 15 24. Eaton W, Mortensen PB, Agerbo E, Byrne M, Mors O, Ewald H., Coeliac disease and schizophrenia: population based case control study with linkage of Danish national registers, BMJ. 2004 Feb 21;328(7437):438-9 25. Hadjivassiliou M, Grünewald RA, Chattopadhyay AK, Davies­Jones GAB, Gibson A, Jarratt JA, et al. Clinical, radiological, neurophysiological and neuropathological characteristics of gluten ataxia. Lancet 1998;352:1582­5. 26. J Neurol Neurosurg Psychiatry. 2006 Nov;77(11):1262-6., Hadjivassiliou M, Grünewald RA, Kandler RH, Chattopadhyay AK, Jarratt JA, Sanders DS, Sharrack B, Wharton SB, Davies-Jones GA, Neuropathy associated with gluten sensitivity. 27. Gluten sensitivity: from gut to brain., Hadjivassiliou M, Sanders DS, Grünewald RA, Woodroofe N, Boscolo S, Aeschlimann D, Lancet Neurol. 2010 Mar;9(3):318-30 28. Hopper A., et.al., Pre-endoscopy serological testing for coeliac disease:evaluation of a clinical decision tool, BMJ. 2007 Apr 7;334(7596):729 29. Hill ID., What are the sensitivity and specificity of serologic tests for celiac disease? Do sensitivity and specificity vary in different populations? Gastroenterology. 2005 Apr;128(4 Suppl 1):S25-32 30. Memeo L, Jhang J, Hibshoosh H, Green PH, Rotterdam H, Bhagat G., Duodenal intraepithelial lymphocytosis with normal villous architecture: common occurrence in H. pylori gastritis, Mod Pathol. 2005 Aug;18(8):1134-44 31. Abrams JA, Diamond B, Rotterdam H, Green PH. Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy, Dig Dis Sci. 2004 Apr;49(4):546-50 32. Tursi A., Seronegative Coeliac Disease: a Clinical Challenge. BMJ 26 April, 2005 33. Rostami, K., Unforgiving Master of Non-Specificity and Disguise, BMJ 27, April 2005 34. Lebwold, Green P., Screening for Celiac disease. N Engl J Med Oct.23 2003,1673-4 35. Freeman HJ., Pearls and pitfalls in the diagnosis of adult celiac disease. Can J Gastroenterol 2008;22(3):273-280. 36. Bonamico M., Serologic and Genetic Markers of Celiac disease: A Sequential Study in the Screening of First Degree Relatives, Journal of Pediatric Gastroenterology and Nutrition 42:150–154 37. Fasano A., Catassi C., Current Approaches to Diagnosis and Treatment of Celiac disease: An Evolving Spectrum, GASTROENTEROLOGY 2001;120:636–651 38. Hadjavassiliou M., Grunewald R., The Neurology of Gluten sensitivity:Science vs. Conviction Practical Neurology, 2004, 4, 124–126 39. Camarca, A., et.al., Intestinal T Cell Responses to Gluten Peptides Are Largely Heterogeneous: Implications for a Peptide-Based Therapy in Celiac disease, J. Immunol. 2009;182;4158-4166 40. Meresse B., , Ripoche J., Heyman M., Cerf-Bensussan N., Celiac disease: from oral tolerance to intestinal inflammation, autoimmunity and lymphomagenesis, Nature Vol 2 No 1, JANUARY 2009 41. Bethune M.,Parallels Between Pathogens and Gluten Peptides in Celiac Sprue, Plos Pathogens Feb 2008 Vol 4: 2;e34 42. Ehrhardt G., et.al. Discriminating gene expression profiles of memory B cell subpopulations JEM VOL. 205, August 4, 2008 43. Martucci S., Corazza G., Spreading and Focusing of Gluten Epitopes in Celiac disease GASTROENTEROLOGY Vol. 122, No. 7, 2002 44. Pastore L., et.al., Orally Based Diagnosis of Celiac disease: Current Perspectives, J Dent Res 87(12):1100-1107, 2008 45. Vader W., et.al., The Gluten Response in Children With Celiac disease Is Directed Toward Multiple Gliadin and Glutenin Peptides, GASTROENTEROLOGY 2002;122:1729–1737
  37. 1 point
    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.
  38. 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,
  39. 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.
  40. 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!
  41. 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.
  42. 1 point
    I would not worry but..... Ennis was right about new “green” disposable flatware and dishes. Now they are using wheat. I would be interested to see if anyone actually tests this stuff.
  43. 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
  44. 1 point
    I was just diagnosed with Celiac after 19 years of chronic sternum pain. No one knew the cause. I also have a history of passing out. See a cardiologist to rule out heart problems. There are many things that could cause it. I have low blood pressure and dehydration have even put me on the ground.
  45. 1 point
    if you have celiac and you eat gluten, you will feel terrible and do damage to your body. there isn't any 'morning after' (for lack of a better term) tried and true remedy. if i am accidently glutened (and i am insanely careful, so this does not happen often anymore) i find that drinking plenty of water and long, hot showers make me feel better, but it doesn't leave until day 14. 14 days. ain't nobody got time for that. no matter what i try, it's naps and snacks for 14 days. then the fog lifts and my guts stop protesting. you will get better at avoiding gluten and cc by practicing being gluten free. i would eat whole foods (avoid processed while your guts are healing) and skip eating out for awhile until you get better at knowing how to determine which restaurants are safe and which ones don't give a crap if they give you the craps <see what i did there lolz) go to the coping page and read the newbie thread. there is much useful info there - more things to avoid than just bread - and ways to navigate this lifestyle. welcome to your new normal. pack a lunch, because if ya got celiac, every day's a picnic. literally.
  46. 1 point
    Welcome back. I'm sorry the gluten challenge hit you so hard. Did you get tested after the challenge? If not, you might want to do it right away so you know if you are dealing with celiac disease or the more common non-celiac gluten sensitivity (NCGS), which has almost all the same symptoms that a celiac has. Hope you feel well again soon.
  47. 1 point
    Well your not alone. I am also 5'4" and would be happy if I could get back to 112lb. I seem to stuck at 105. I was up to almost 115 but then had a job that was not a good fit for me and lost 10lbs. Putting it back is hard. One thing I have done in the past that worked for me (don't know how healthy it was) was eating Wylde pretzels. They are gluten and soy free and each bag had 900 or so calories, if I remember correctly. I would eat my regular meals but would open a bag in the morning and munch constantly on them over the whole day. With the extra almost 1000 calories a day I did gain a bit. At this point I am trying to gain with more healthy alternatives. I got some chocolate hemp protein powder and try to make at least one shake a day with whole milk and 1/2 banana. I make muffins with Pamela's mix, fruit and nuts and snack on those between meals. I try to make each meal as high calorie as I can by using lots of butter, whole milk, sauces etc. I also try to exercise more to try and gain muscle. There are some places I would rather not see more fat on. LOL Gaining weight can be very difficult for some people. I wish I had some more advice other than just the obvious get more calories.
  48. 1 point
    Several years ago, my company had branch offices in Uruguay and Argentina. The first time I went there, I spent a month in Uruguay and remember quite well yerba mate. It was quite a social activity. Everybody had their mate and the things that went with it. I remember quite well the sipping spoons. The bowl was a sieve that held the mate and the handle was a straw. Being invited to drink mate with someone was an expression of friendship and a bit of an honor. At first I thought that mate might be some sort of drug. The social aspect of it and its usage were reminiscent of marijuana in the 60's (i.e. friends passing around a joint). Stores that carried mate devices were definite reminders of head shops. However, mate turned out to be just a type of tea. It was omnipresent. While I was there, a big agri-business event was held in Montevideo with participation from several countries. When you entered the fair grounds, the first thing you saw was a big banner that stated that hot water was available for your mate at such-and-such booth. Not a welcome banner, mind you. Not a convention banner. I guess it was a case of important things first. Some companies have rules that limit usage during working hours. As a result, people sneak out to their cars to drink mate. Some devotees are betrayed by a semi-burn on their lips from the hot sipping spoon. With restaurants opening for dinner at 9 PM, clubs opening after midnight and workers getting home at 4 AM, it was no surprise they needed a boost of energy during the day. Ranching and livestock are important aspects of the countries. As one would expect in countries with ranches and real "cowboys", the macho way to enjoy mate was to drink it from a hollowed out bull testicle. I think it is more a case that the Uruguayans IMHO are a very special people. Very proud to be Uruguayan and extremely friendly. I have never met people as friendly as they were. In Uruguay, you actually don't have friends, you have family. It is that type of place. They work hard. They play hard. Life and living are of utmost importance. Having mate with friends may just be a social framework for celebrating life. I know that is a bit over the top but I think there is some truth there. After I got back home, I ran across mate in a health food store. I immediately bought a box mostly because of the memories it brought back (I have to confess I was afraid to bring back real mate because it looks just a little too much like pot). Unfortunately, mate at home just was not the same. It is too much a cultural experience. Anyone who ever has a chance should visit Uruguay. It is the secret jewel of South America. Go there and drink mate with someone. Relax and enjoy life!
  49. 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
  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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