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  1. 7 points
    Celiac.com 03/22/2019 - I'm going to talk about my journey through the Nexvax trial. It is a clinical trial to study the effectiveness of this drug to prevent mucosal damage due to cross contamination. There are 4 phases to this trial - Screening, Updosing, Maintenance, and Post-Study. Each phase has different requirements from the patient and different goals. Screening for the Nexvax Clinical Trial I found out about the Nexvax trial from my sister. Her job involves keeping up with medical stocks. She saw that ImmusanT had started their clinical trial - a double, blind, placebo controlled study for an injection to retrain the immune system to stop recognizing gluten as a foreign invader. It works similarly to allergy shots desensitizing the immune system to gluten. I looked up the trial at ClinicalTrials.gov and made a phone call to the nearest location. There were 35 trial locations across the US and a couple of locations in Australia. I live in Atlanta and the closest locations were in Jacksonville, FL or Nashville, TN. I decided to call Nashville because it is only a 4 hour drive compared to the 6 hour drive to Jacksonville. I called and talked to Nurse Ratchet (not her real name, to protect the innocent). She explained that it was a long trial, about 7 months, and that I had to be in Nashville twice a week for six weeks. She said she would send me the patient disclosure and she would answer any questions I had when I was ready. She also said that I needed to be able to prove my Celiac diagnosis with both positive blood work and positive endoscopic biopsy. I would have to be on a gluten free diet for 12 months. I would also have to carry the DQ2.5 gene and do a gluten challenge. I will also have to decide if I'm going to participate in the optional endoscopy portion of the trial. The twice a week for six weeks thing threw me for a loop. That would be a big time commitment, hard on my family, and very expensive. I wasn't sure we could do this. As my husband and I review the disclosure document, there is a lot of information to take in. One of the requirements to get in the trial is having the DQ2.5 gene. I've had genetic testing done several times and knew I had one copy of DQ2.5. In reading the documents, if you have one copy of DQ2.5, you have a 1 in 2 chance of receiving the drug. If you have two copies of DQ2.5, you have a 2 in 3 chance of receiving the drug. Nexvax does not work for those with DQ8. According to research, over 90% of people with Celiac have DQ2.5. So, I have 50/50 chance of getting the medicine and I have to be in Nashville twice a week for six weeks. That is a big time commitment for a 50/50 chance at the medicine. We decide it isn't worth it. Until, I talk to Nurse Ratchet and she confirms that if I get placebo in the trial, I will get the medicine when the drug is approved. Now we are talking. I have a 100% chance of getting the medicine - either sooner or later. We decide to go for it!! I find my medical records that demonstrate I have Celiac disease, send them to Nurse Ratchet and we schedule my first appointment - November 1. The first appointment lasts for 8 hours. The initial testing involves blood work, urine tests, EKG, physical, and do a gluten challenge. This is going to be a very long day. The gluten challenge is the most worrying part. I will have to ingest a lot of gluten - the equivalent of two slices of bread. They will gauge my reaction after the drink and monitor me for the next few hours. I have 5 minutes to consume the unflavored gluten drink. At this point, you might be thinking why would I purposefully ingest gluten? I'm poisoning myself. I know I'm going to be sick. What sane person does this? A person that is tired of being sick. I'm tired of worrying about food all the time. If this is what I have to endure to ensure that I can get better, I'm in. After consuming the gluten poison, we wait. After about an hour, I start feeling fatigue - mind numbing fatigue. The kind of fatigue that you just want to lay in a dark, cool room under a blanket thinking of nothing. At hour two, the vomiting starts. I throw up twice in about a 30 minute span. My reaction is severe enough to qualify into the study. But now I have to start to deal with the consequences of glutening myself. Once the testing is over, I get on an airplane and fly home. That was a miserable flight. I won't bore you with the unpleasant details, but know the flight was not good. I'm miserable the whole week after the gluten challenge. Fatigue, brain fog, gastrointestinal distress, and just feeling bad is what I dealt with for a week. A full seven days of being completely incapable of living my life in any meaningful way. It was a week of watching TV, ordering food in, and just breathing. Eventually I get better. When the malaise lifts, it lifts like opening a curtain to reveal bright sunshine. I am finally better. We opted to do the optional endoscopy study. I had to go back to Nashville at the beginning of December for the endoscopy. The flight, fasting, and doing the test in the early afternoon did not make for a great day. Really, it was a very bad day. Normally, I don't struggle with endoscopies. Normally I simply do the endoscopy and go eat a big meal and am fine for the rest of the day. This time I slept from about 1 hour before my procedure, through the procedure (they gave me good stuff to help with that), and then on the 4 hour car ride home. I slept a lot that day. Then we wait. We have to wait for all of the blood tests and endoscopy results. About a week after the endoscopy, Nurse Ratchet confirms I have made the cut. I'm in the trial! During the trial, I had to promise to not start taking any supplements or medicine without letting them know. I had to put a card in my wallet that said that I was in a clinical trial and it not give me medicine until the doctor called this number. There are also surveys you have to fill out on the little device they give you. You have to do them every night and they must be completed between 6 pm and midnight. Most days it is two surveys - one asking about symptoms and one about your bowel movements. The one about the symptoms asks you to rate how your symptoms are on a scale of 1 to 10. The other asks how many bowel movements you've had and tell what they were like on the Bristol Stool Chart. In the whole 6 month period you are only allowed to miss 4 surveys. I set two alarms to remind me - one at 6 pm and one for 8:30 and carried the device with me at all times so I could do the survey when ready. We have completed phase 1 - the screening phase. Now, it is time for phase 2 - updosing. Updosing: Reaching the Nexvax Dosage In reading the consent document, updosing is important because when they tried to give people the full dose of the medication in Phase 1 trials the side effects were too dramatic and people dropped out. The main side effects of this medicine are headache, fatigue, and diarrhea. Those side effects are the same for me when I get cross contaminated so I wasn't worried about the side effects. On the first injection day, I had to be in Nashville for for 4 hours so medical personnel can watch you and make sure you don't have an allergic reaction. They use a small insulin needle to inject the drug, so it doesn't hurt. The shot does have to go into your belly, so that's a little weird. I would have preferred it in my arm! The first dose is a very small dose of the medicine with a lot of saline. Over time the amount of medicine increases and saline decreases until about half way through. About half way through the up dosing, you get the medicine straight, no chaser (no saline). The updosing is not a challenge. I did have periods where I did experience side effects. Occasionally, I had problems with fatigue and headache, but it did not affect my life or how I functioned. There was one time, specifically, I had an issue with fatigue and headache. This was a bad headache. It did not let up with ibuprofen or acetaminophen alternating every 4 hours. It was about half way through the updosing and it lasted for about 3 days. Then it lifted. Everything was gone and I was back to feeling good. Also over the course of this study, I've had periods of flushing. Flushing where my face and neck would turn bright red and feel like they are on fire. When this happens, I would take a Benadryl and go to bed. My mom thinks it is menopause, but that's just for old ladies, not me. The hardest part about updosing was the travel and the grind of going twice a week. I also was doing this in December and January. December and January are hard because of the holiday season, but we also have 3 family birthdays during the span of this period. But we made the best of it and one time the whole family came with me and we spent a couple of days in Nashville. Maintenance Dosing Once updosing is complete, maintenance dosing starts. Maintenance dosing is 10 weeks of twice weekly injections of the full amount of medicine. They are self-injections. The injections need to stay refrigerated, so I have this super cool cooler in my fridge. TSA didn't even flinch when I came through security! I got 20 auto-injectors for the ten weeks of twice weekly injections, alcohol swabs, and a log book. I had to log the date, time, and location of my injection. You inject in a pattern in your abdomen- upper right, lower left, lower right, and finally upper left. I will say this phase was a bit of a relief for me. It meant less travel and just kind of coasting along. Until, the food challenges - duh duh duh daaaaa! The food challenges are to see if the medicine is working. There are three food challenges - one gluten, one placebo, and one either gluten or placebo. So, you will get gluten at least once but not more than twice. The challenges are spaced two weeks apart. The procedure for the food challenge is much the same as at the initial gluten challenge. They do the normal stuff - weight, blood pressure, and temperature. Then they pull out the big white box with my name on it. Inside the big white box is three smaller white boxes. They all are sealed. These are my food challenge boxes. She takes the first box out and opens it. It contains a shaker bottle, a box of water, and two packets of powder. One packet of powder is flavoring and the other is the test material. She mixes the drink per the instructions and I have 5 minutes to consume this beverage. The drink is pink and overly sweet. (At the gluten challenge, there was no flavoring. Just straight up gluten.) The test drink tastes terrible, but I consume the beverage. Then we wait. We wait to see if my body reacts the same or differently to the initial gluten challenge at the start of the trial process. It is just a waiting game. They said I could keep the shaker bottle we mix my food challenge drinks in. They are really nice shaker bottles. I cannot keep them. I truly never want to see those shaker bottles again. Those shaker bottles are my enemy and I want no part of them. Those shaker bottles make me sick and I don't want them. I've done two food challenges to this point. One I had no reaction and the other I reacted. I threw up, but I wasn't tired for a week. I was tired for 24 hours. So, that's where we are. We are working through the process. I have no idea if I'm getting the medicine or placebo. I don't know if I got gluten at any of the food challenges. That is what makes this so hard. The mental gymnastics of am I getting the medicine or am I not - is very, very challenging. It can consume all of your thoughts if you let it. Post Trial I haven't gotten to this part yet, I'm still in the food challenges phase of the study. The final part of the study means I will turn in all my used autoinjectors and boxes, log from where and when I did injections, and be turned loose into the world with my new found protections against cross contamination. It will be exciting. Conclusion I don't know if I got medicine or placebo. I may never know for sure. I have guesses and theories but that is all I have, which makes this really hard mentally. It is hard to have symptoms or not have symptoms and not know if you are getting the medicine. But I think those mental gymnastics are not helpful. I went into this hoping for a cure with the expectation that I would not receive the medicine and would be sick quite often. I haven't been any more sick than I would have been living my life normally, so that's a good thing. Some people argue that they never want a medicine for Celiac. They don't want a vaccine or any part of anything from Big Pharma. They say putting gluten in your body is inflammatory and bad for everyone. They say Roundup causes Celiac disease and if you eat organic all will be fine. Here's my answer - If you don't want the medicine, don't take the medicine. It isn't required and nobody will force you to take it. But this disease has impacted my life so dramatically, I'm willing to try a new medicine to alleviate the symptoms. This disease has affected my family, my health, my social life, and my ability to vacation among other things. Even if this or any other medicine is approved, I'm not sure I would return to a full gluten diet. I don't mind a gluten free diet. I mind the constant vigilance I have to have all the time while eating three meals a day. I mind that many labels are not accurate when they say an item is gluten free, but it has barley or rye in the product. I mind that I can't just take a road trip with my family without carefully planning each meal along the route so that I'm sure I can eat safely. I mind that I have to ask every waiter 15 million questions before ordering at a restaurant in order to get a meal that is safe and even then I'll probably be sick. I mind that I can't engage in normal social activities, like sharing a meal with someone, without doing research on where we can go or just having to bring my own food. I mind not being able to have a scoop of ice cream with my kids at the beach in the summer. I mind a lot of things that this disease has imposed on me. I believe most other Celiac sufferers endure the same hardships I do in finding safe foods. So, finding a cure or at least something that makes our lives better is a worthy cause that should be encouraged and cheered. Maybe others don't share my struggles and that is great. Maybe they are happy never going to dinner or out with friends. I'm not. I want a normal life or even some semblance of one where I can do the most basic and ancient ritual of society - sharing a meal without fear. So, take the medicine or not - it's up to you, but don't knock the people who want it.
  2. 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.
  3. 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.
  4. 3 points
    If you don't talk to doctors then they don't say stupid stuff.
  5. 3 points
    So I started taking Creatine to boost my workout performance and muscle mass building, it is like someone entered the god code on life. Used to be I got tired after 3-4 sets. Now I am sitting here an hour later 12-15 sets and still not feeling tired and pushing further while gaining muscles. This had me wondering, could this help the average joe or jane suffering from chronic fatigue and feeling tired. I use B-vitamins, caffeine, vitamin D, magnesium also, and my mental energy has been well for years with them and the Keto diet. But this....this just took the body fatigue I used to get and trashed it. I sorta expect a crash, I mean 20miles+ a day, 1-2hours resistance and weight training. I think my fitness monitor would freak out most. But I feel great like I am alive again.
  6. 3 points
    60% of those with DH test false negative on the celiac serum panel. http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/ A positive dh biopsy is a dx of celiac disease, no further testing is needed. The dh biopsy alone is definitive. http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/ http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Now, I want to talk a little bit about Dapsone. It's not a magic potion. It carries a lot of risks. It has some real negative points. There are a lot of potential side effects of Dapsone, including a (gulp) skin rash. Lots of people who have come through this forum have tried Dapsone & many had to quit it b/c of side effects. Some do okay on it but many more do not. https://www.mayoclinic.org/drugs-supplements/dapsone-oral-route/side-effects/drg-20063327 You need to have labs done periodically to make sure Dapsone is not interfering with your platelets or liver as it can do such, also your iron needs to be monitored as Dapsone can cause anemia. NOTES: Do not share this medication with others.Laboratory and/or medical tests (e.g., complete blood counts/platelets, liver function tests) should be performed periodically to monitor your progress or check for side effects. Consult your doctor for more details.Iron, folic acid, and vitamin C might reduce the risk of developing a certain serious side effect (anemia). Ask your doctor for more details.If you are using dapsone for dermatitis herpetiformis, a gluten-free diet may improve the condition. Consult your doctor for more information. https://www.medicinenet.com/dapsone_dds-oral/article.htm Finally, while Dapsone may work to relieve the dh rash, that can fool you into thinking you are doing very well with making sure you are eating completely gluten free. We've actually (I swear!) had one person on here who was on Dapsone for 20 years!!!!!! Since childhood, but their doctor NEVER told them they had to eat gluten free, that they were celiac. So, they ate gluten all those years & the Dapsone kept them from knowing they had a problem b/c the Dapsone kept them from getting the rash. She ended up with lymphoma from the untreated celiac. My point is that you won't know when you're getting glutened or cross contaminated. That carries it's own risk. You will have no canary in the coal mine.
  7. 3 points
    Most members who are no longer active on the forum and leading normal, healthy lives. The few active old timers are here to help new members. Not everyone remains ill. Think about that.
  8. 3 points
    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.
  9. 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!
  10. 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.
  11. 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!
  12. 2 points
    hmm, that explains why I always have the urge to grab a club and bang something with it......lol
  13. 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 😛
  14. 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.
  15. 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
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 2 points
    Welcome! Celiac disease can cause many rashes, but the most notable is Dermatitis Herpetiformis (DH). It is usually bilateral (both sides of the body). The only way to know for sure is to get a skin biopsy. It can not be diagnosed visually. https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/
  22. 2 points
    Unsure about where you are, but in the US colleges, businesses, etc. Have to accommodate disabilities and conditions legally. With a medical Diagnosis on file, talk to the coordinator for housing. Might get you your own room, or find someone else with celiac to room with. Shared microwaves, great thing about that nordiware...the splatter covers cover your food while it cooks on the grill plates or plates, the steamers and omlette makers close up. They are lightweight, cheap, and easy to clean. Oven, put down foil on the rack, bring your own dishes...and you can foil line them for easy cleanup and extra precautions. Great for a casserole you can eat on for days. Can you get a instapot? Heck crockpot liners in them and make a nice stew/soup. You can put red tape on everything that is yours to "Mark them" as gluten free, even the condiments. Dairy intolerance is very common with celiac, the longer you take damage the worse it gets as the villi produce the enzymes to break it down (just a note on the butter) I personally just use butter flavored coconut oil nowadays.
  23. 2 points
    The short answer to your question is, "yes." In fact, I've come to the conclusion that your experience is not the exception.
  24. 2 points
    That excellent thought only came to me AFTER I had arrived home! But had it occurred to me while en route, oh yes, screw public decency, I WOULD have pulled over and stripped naked, absolutely, no question!
  25. 2 points
    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.
  26. 2 points
    You are allowed to pissed off, shocked, grief you name it. You will probably go through several emotions if this is confirmed by GI and endoscope. I was misdiagnosed as IBS for 20 plus years. So the IBS misdiagnosis decades before the Celiac diagnosis-never surprises AWOL!
  27. 2 points
    Hi Kelly, Thank you so much for writing about your experience. I was diagnosed with Celiac Disease about 5 years ago, but have been sickly most of my life and no one knew what was wrong with me. By time I was 60 (or 61) I was below 80 lbs and completely malnourished. That's when my family said "Maybe you have Celiac Disease" and I was finally diagnosed 2 months later. My tolerance is now ZERO for any amount of gluten. I have had 3 major gluten attacks since 2015. All 3 times I ended up with severe stomach spasms, vomiting, diarrhea, total body aches and ended up in the Emergency Department. Smaller cross contamination episodes cause me to have cramping, stomach aches and painful diarrhea. Surprisingly, after going completely gluten free once I was diagnosed I gain 25 pounds in 2-12 months. I cannot even have a small amount of gluten so I can totally relate to you when you talk about not being comfortable going on vacations. I cannot go visit at a friend's house for dinner as I was glutened at a family holiday dinner three years ago. So I stay away from holiday dinner except at my sister's house as my - my brother-in-law is VERY accommodating and prepares gluten free meals for me and even bakes me awesomely delicious gluten free deserts. I'm very fortunate that way. I'm still skeptical at some restaurants, especially ones that state they have "gluten sensitive" options, then I usually just eat a salad with oil and salt or bring my own dressing (and gluten free bread). Bless you for going through this trial. You're a trooper!!! I do hope you are getting the drug and not a placebo, and most importantly I hope it works, no only for you but for all of us out there who really need it. I would love to live a "normal life again. HUGS and I hope all goes well with you and the rest of the trial. Marlene
  28. 2 points
    Your mental health issues may be very impacted by or even the root cause of your possible untreated celiac disease. Researchers are studying the gut-brain connection. Look at this as an opportunity to to improve your health. Thankfully, celiac disease can be treated by the gluten free diet. https://www.health.harvard.edu/diseases-and-conditions/the-gut-brain-connection and...you are allowed to be pissed off. It is part of the grieving process. All those little things bothering you (e.g. IBS, fatigue) most likely will resolve on A gluten-free diet and even improve your thyroid condition. Did they check your thyroid antibodies? (I have autoimmune thyroiditis too.)
  29. 2 points
    And he needs to be super strict in his gluten free diet! SUPER strict, not just low gluten. No cross contamination, NONE. I am so sorry, there are no short cuts with the testing. It flat out sucks but there you have it. Welcome to the forum!
  30. 2 points
    Hi TDZ, My understanding is the same, a full gluten challenge is needed for the DH diagnosis. The method the use for DH is to take a skin biopsy from next to a lesion, not on it. They check the biopsy for IgA antibodies. I don't know of any way to shortcut the process and avoid eating gluten to get tested. There may be a test some day that doesn't require it, but for now I don't think there are any out there. One thing he might not have tried is avoiding iodine. Some of the members with DH find iodine makes the rashes worse / longer lasting. He'd need to look up iodine containing foods and avoid them. I suggest talking to the doctor and asking for a dapsone RX. He may as well try it since it might help Dapsone is a temporary treatment though and not a long term solution. Welcome to the forum!
  31. 2 points
    This was absolutely the breakthrough that helped me get better. I was sloppy with the GFD in my first year because I didn't know better, and still kept getting sick a lot. I did some research, and complied with what most specialists would agree is a competent GFD for a celiac. I still was getting sick - not as much, but my iron and other blood values were not good. The rash was relentless. It was unspeakably frustrating to feel like I was doing everything right, but was still so messed up. I didn't think of oat contamination until I ate got a bad batch of corn chips. One of my corn chips was grey, and tasted weird. I called the company (thinking it might have been wheat), and it turns out that my bag was made in a gluten-free facility - on the same line as gluten-free granola/oats. So my weird chip was almost certainly an oat chip. That got me thinking - chances are these chips I've been eating everyday are always a little contaminated with gluten-free oats. I stopped eating them, as well as any other gluten-free product made by a company that does oats. It made such a huge difference. It is a great worry to me thinking about how many people don't realize this is happening to them. I know for sure that I react to oats because I tested myself with purity protocol oats under the Canadian Celiac Assoc. protocol - I couldn't make it past day 2, and then I was bedridden for about 10 days. That is the same reaction I would have had to drinking a Guinness, so it makes sense that foods CC'd with oats would be problematic. No one wants to acknowledge that this might be a problem because it's unpopular, however. But imagine if there was a type of peanut that was not tolerated by 20% of peanut allergic people... do you think that would be allowed in peanut-free products? Hell no, it wouldn't because society takes peanut allergies seriously, unlike celiac disease.
  32. 2 points
    Different protein, it does not trigger celiac disease. Corn Gluten is different than wheat, barley, rye gluten, the amino acids composing wheat, barley and rye are very similar (oats are close), but corn and rice gluten has a different structure. Some people also have issues with it but the gut and autoimmune damage is not present. IE I got an allergy to the corn protein, but that is different them a celiac reaction that attacks my organs, many get food intolerances or sensitivities and corn is a semi-common one.
  33. 2 points
    I use it for anxiety and depression...I was on it when I was last exposed and it did not stop the vomiting, D, and ataxia. While it can be useful for anxiety, depression, nervous issues, and pain, it does not slow down, or stop the damage gluten does to a person with celiac. You might be numbing yourself from it but your immune system will still be destroying your insides.
  34. 2 points
    Regarding the canker sores and fever blisters. This happens usually due to malnutrition and is common with undiagnosed Celiacs. Specifically A diet lacking in vitamin B-12, zinc, folate (folic acid) or iron. Canker sores may also occur because of certain conditions and diseases, such as: Celiac disease, a serious intestinal disorder caused by a sensitivity to gluten, a protein found in most grains Since it is a disease of malabsorption you will find that many if not all symptoms you feel can be directly related to specific vitamin and mineral deficiencies. Often I search on google for "what deficiency causes conditions like ie; ringing in the ears, dry eyes, muscle twitches, canker sores, glossitis, irregular fingernails, rashes, loss of feeling in hands and feet". The list goes on forever. Try this and educate yourself regarding deficiencies, worth its weight in gold toward understanding the impact of malnutrition. You don't mention if the antibiotics were prescribed as a method to treat the canker sores but I am assuming that is what happened, please feel free to let us know if that is a poor assumption. Regarding the rice, I personally have never heard of rice causing an issue but you must realize that a lot depends on how the rice was prepared and any possibility of cross contamination. Now that you have been diagnosed as Celiac it will require that you do a lot of research regarding the Gluten Free diet and some of the downfalls due to cross contamination, preparation and general practice of eating safely. So glad you found this site because it is littered with Celiacs who care and are more than willing to help you and others. I have been gluten-free for 11 years and never eat in restaurants, just my preference because of the bout I had for most of my life. It is common for certain antibiotics to cause diarrhea even for non-celiacs but more importantly once you maintain a 100% gluten-free diet and supplement with vitamins and minerals the canker sores should fade away. It can take weeks to months to start feeling normal again, as for me, in two weeks I felt better stomach wise and months for the neurological issue to wane. For the record, you did not ask too many questions. The people here care and will help when they can.
  35. 2 points
    Hi! I too was just recently diagnosed w celiac. I have had mouth ulcers, food sensitivities and stomach issues as long as I can remember. Have has mouth ulcers by the dozen for months w no relief.except prednisine. Specialists, dentists, etc. All typical testing came up normal. Finally a trip to the dentist last week brought some relief w an explanation. My hygeniest took one look in my mouth & said do I have celiac? Suggested what I suffer from is oral lichen planus an autoimmune disease that effects the mouth & goes hand & hand w celiac! Off to the MD to get tested & yup I have celiac. The elimination of gluten should eventually solve the ulcer situation. Hope this info helps....
  36. 2 points
    Yes this can happen. What you described is what I go through with even the tiniest amount of gluten. The only difference is I will bleed for a few hours afterwards now. Just this pain alone is enough to make me extremely cautious. It can be so bad that it feels like I am going to pass out. I make sure to bring a phone into the bathroom with me when it happens and have awful thoughts of being found days later dead sitting on the toilet with my head resting on the sink and my pets chewing on my ankles. There is nothing you can do for your freind other than encouraging them that hard as it is he/she has to be more cautious. When you have celiac even a little can hurt and they are keeping the antibodies active. Those antibodies can attack any organ in the body including the brain. Do encourage them to come here and post with any questions or even just read. They are not alone in that many celiacs have a difficult time with their diagnosis and realizing that celiac isn't just a matter of changes in diet but also big changes in many aspects of their lives. Those changes can be dealt with and folks here can help.
  37. 1 point
    Hooperman, If stress is your main problem try drinking some Holy Basil tea. Here is an article about it. https://vitanetonline.com/forums/1/Thread/394 I used to drink it myself for my morning tea...but when I found when my stress(ors) got better in my life I found I didn't need it as much. But Holy Basil has a known calming effect...I was also doing it at the time to help my blood sugars. ...it does this it is thought by/helping decrease Cortisol (stress hormone) levels in the body. And we all know what stress does to us...so anything that can help your stress ...could help your depression/anxiety etc. in theory. I know it helped me....this is not medical advice but I hope this is helpful. Posterboy,
  38. 1 point
    I am glad the gluten-free diet worked for your daughter. Researchers are now checking out the Autoimmune Paleo Diet that many on the internet have claimed to help various autoimmune disorders. It is grain free (and that includes gluten free). Scripps in San Diego did a tiny study on IBD patients who achieved a 78% remission rate based on biomarkers (Crohn’s and Ulcerative Colitis patients did not alter their meds). Now they are testing Hashimotos patients. Food can heal. My own kid feels better on a gluten free diet. Probably eats less processed food/junk. Celiac disease was again ruled out recently, so she is free to eat gluten free or gluten light if it makes her feel better.
  39. 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.
  40. 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.
  41. 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
  42. 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!
  43. 1 point
    Yeah, if you understood correctly what the doctor told the husband, then the doctor is...not accurate. I like Flaming Idiot. Perhaps not politically correct, though. If the husband had no positive celiac antibody tests (there are more than one), and no villi damage with the endoscopy....then he doesn't have celiac disease right now. Assuming, as SquirmingItch said, that the doctor took plenty of biopsies, analyzed them under a microscope, and husband has been eating plenty of gluten for months preceding the testing. He might develop celiac disease in the future and should be tested on a regular basis. The genes...there are two major genes associated with celiac disease. They are called simply DQ2 and DQ8. Any given person has the possibility of having one or two copies of each gene. In the general population, 30% or more people have one or more copies of the DQ2 or DQ8 gene, yet only a small percentage develops celiac disease. There are a very few people who do indeed have celiac disease, but do not have either gene marker positive. If the other kids in this scenario indeed have no DQ2 or DQ8 genes, they would not need to be screened routinely for celiac disease. If, however, they seem to have symptoms then they should be tested anyway. Your friend should be screened for celiac disease since her child has been diagnosed, by blood antibody tests, even if she has no symptoms. Maybe by a different gastroenterologist!
  44. 1 point
    Great advice. Just remember that you are the customer. Know that each pharmacy with Walgreens is slightly different — meaning the staff. Some may be more helpful than others. If you can not get help to your satisfaction, find another pharmacy or choose a different Walgreens. Also, try to go in during slower times. For example, I have gone into our hospital pharmacy on Sundays. They are only filling prescriptions for hospital patients and the pharmacists assigned to walk in traffic are bored!
  45. 1 point
    Well, I had a positive health turn around with something new. I was doing some reading on intermittent fasting, Various benefits, for staying in keto, allowing your body to focus on building muscle and healing instead of digestion, detoxing, burning fat effectively etc. I was honestly scared I would waste away but that was not the case. I started last week with 16-hour fasting, I adapted the times to my life and this is what has happened in 7 days. 1. I have been having vomiting issues since mid last year ever night IT STOPPED 2. I have been having trouble gaining muscle weight and trimming out this one area on my belly, I am up 2lbs, more muscle tone and definition. 3. I feel more motivated to do stuff. I do not get tired as much, more energy into the evenings. 4. Lower resting heart rate, this is a sign of good health. 5. More time, I no longer spend as much time with my own meal prep, I am no longer eating every 4 hours. 6. I no longer get the binge eats, I feel satisfied, I am craving savory for meals then sweets. 7 Saving money, I am not spending as much money on food, and digestive enzymes for each meal. I am thinking of increasing it to 18 hour fast for april. I am getting up 3:50am taking my meds, stationary bike while reading email for 30-40mins, working out HITT for 30mins or Yoga for 20. Then doing meal prep for the day, baking for others, and eating my own huge 8 egg omelet or quiche around 5-6am clean up, and weights for 20mins, Then back to computer work for the day on a stationary bike, and various daily activities, deliveries, errands, cooking. HITT and weights again, Then lunch around 12pm tons of enzymes, normally having been cooking for others, and meal deliveries. I then after 1pm will not eat any more calories but have unsweet green tea and black coffee and maybe some millies sipping broth along with more weights and working out in the evenings instead of eating and cooking, then I am spending my spare and unbloated time getting out and doing stuff. I did my research reading stuff by ketogenic girl and thomas delauer, about IF and diet macros, the importance of greens with fats, what to eat and not eat, biohacking to better stabilize your life, heal your body, and find what works for you is a bit fun.
  46. 1 point
    Brown or Ivory Teff Flour Substitution for Oat Flour? The answer: It makes no difference. The photo above shows a loaf made using Bob's Red Mill brown teff flour. Even cutting back the buckwheat flour to 1-1/4 cups and the steeping water to 2-1/4 cups, the bread height still rose to 4-3/8 inches. Tastewise, there was no noticeable difference in taste between using ivory or brown teff flour in this recipe. Colorwise, because the bread is already a dark brown from sorghum, buckwheat and molasses, the loaf color is the same whether using ivory or brown teff flour. The brown teff loaf also had a slight crack across the top crust, though less pronounced than in the ivory teff loaf. Mild flavor molasses was used in both the ivory and brown teff loaves so their tastes could be compared. The taste is great as is, but using full flavor molasses should give the loaf a more robust taste to compete with the slightly more hearty, bread-like taste when oat flour is used instead of teff. In the end, buy the lowest price teff flour you can find, ivory or brown. For me, that would be Maskal Ivory Teff bought in bulk from WinCo Foods at $2.66 a pound. Buckwheat flour and steeping water can be cut back another 1/4 cup for a flour blend of 1 cup each of sorghum, teff, and buckwheat flours, 2/3 cup each of potato and arrowroot starch, plus 2 cups water to steep the flaxseed. Use full flavor molasses. Mix for 35 minutes using a Bosch Compact Mixer with dough hook at speed "2". Using teff flour results in a softer loaf with greater height and volume per cup of flour than when using oat flour. Oat flour produces a slightly more bread-like taste. I love both breads.
  47. 1 point
    Googling around a bit is making me give the side-eye to what, up until now, I've assumed was dyshidrotic eczema…
  48. 1 point
    It can be so amazing to have a good dog in your life! My heart still aches for my old dog Jack. I now much more understand that line in the old song "Mr. Bojangles": His dog up and died, he up and died after 15 years he still grieves ....
  49. 1 point
    Hi I just read your post about your two year old. The first time my seizures were detected were about 44 years ago. At the time it was diagnose as a seizure disorder. At that time you did not talk about. I always new there was something deeper going on... and I have done a great deal of research including coming across an article that research into food allergies was discontinued when anti seizure medication cam into play. I had my DNA test and I have marker for celiac disease. I had some tests done and the GI doc said it is likely I have celiac disease. I found your post when I was looking for an article posted on one of the celiac site on celiac disease and epilepsy and celiac disease. I was printed in the Journal of Neurology. I wish I had printed it. I talked about patients who have been diagnosed with epilepsy don't have any gut damage but it effect the brain. I started with DNA marker. I found experimenting on my own eliminating gluten and dairy and recently corn has been a huge help. Keto diet has been known to help with seizures disorders. I kept a journal of what I ate and how it affected my health emotionally, physically. I was able to find my triggers and eliminate them. Alcohol, Stress, Lack of sleep, Sugar, Caffeine, gluten and dairy and corn. As I got older, I also paid attention and tracking my dream and received a lot of answers. Best wishes you your daughter and family. At this point, with our food supply being tampered with I believe that DNA testing for Celiac Disease genes. If you have the markers, it doesn't mean you have celiac disease but the possibility is there... You would need to refer to you doctor, preferably one that has knowledge of Celiac Disease. It took me 46 years to get diagnosed.
  50. 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
  • Posts

    • Did you actually get a complete celiac panel?   https://www.verywellhealth.com/celiac-disease-blood-tests-562694 Doing allergy testing (IgG) is well sort of helpful, but not very accurate per all the leading allergy groups.  You can google that.   Since 2012, have you ever thought about going gluten free for six months?  Unless you really need a firm diagnosis, it is something to consider.  My hubby did that some 20 years ago and is healthy.  Oddly,  I was  diagnosed with celiac disease about 12 years later (biopsy confirmed).    It can be helpful to have a diagnosis, but it might be better to feel good.    
    • Thank you so much.  No doctor would refer me to a gastro doctor, so I made an appointment myself without referral.  I took all my copies of bloodworkwith me and begged for help.  I explained my situation. He was one of the best in my town.  I was told to throw all my integrative tests in the trash and to gain 20 pounds and I would feel better.  At the time I was my normal thin self.  He said my bloodwork looked good and I was not a risk factor.  I may try to see another specialist and see if anyone is willing to help with a scope.  Thank you so much. 
    • Yes, celiac runs in families. You can have testing done to see if you carry the chromosomes that predispose you to it. There are many folks who have the chromosomes who never develop celiac, but it is my understanding that if you don’t have those chromosomes then you probably don’t have celiac.... with the caveat that they are finding more genetic markers as time progresses. If your brother has celiac, you are at risk, but not guaranteed to develop celiac disease. All celiacs have to be extremely careful about accidental contact with gluten. It can be debilitating. Some of us are extremely extremely reactive. You need to be consuming gluten during testing for celiac and to go to a doctor who is celiac aware. This forum has files attached which help folks new to the disease... those may help you too.  Hashimotos disease of the thyroid is an autoimmune disease that sometimes runs hand in hand with celiac. Autoimmune diseases seem to not run in isolation.  Hashimotos often expresses as hypothyroid. That is not to say that is what is going on with you... just be aware that if you end up finding out you do have an autoimmune disease, you may have another, too.  I am not a medical person, nor do I pretend to know much of anything, but I do know that for me, after years and years of pain and misdiagnoses, it was rather a relief to have a GI doctor agree to test me and then find out there was a name for what was wrong with me, and a simple solution. Weird thing, too... I found out a few months after diagnosis that my great grandpa had died of celiac related disease. No one had ever mentioned it.     
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