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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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Showing content with the highest reputation since 08/23/2017 in all areas

  1. 4 points
    .....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU CAN LIVE THIS WAY. We would go out and hit the city every weekend and go to clubs, bars, etc. Show you the safe drinks, bring out own cups, show you that you CAN have a social life on this diet with a few changes, Want a date? Head out a few time on non meal related ones, clubs, etc. Then picnic ones, heck I would even offer to cater a bloody meal as a chef and teach you to cook. Women love men who know how to good real food that taste great. FFS there are plenty of food options that are gluten free, HELL most great ones are gluten free, only cheap burgers, sandwiches etc have the crap and can be made gluten-free easy now days. Good steak dinner, roasted/grilled veggies, glass of wine....a meal really you can make fancy easy and be gluten-free and be loved for it. I swear I know your right now suffering from defenicey mental issues and anxiety, but the s$#& goes away after some healing......honestly people like and you instances like this are why I think a celiac halfway house needs to exist......rant over. Please just, step back look at our advice and change everything over to gluten-free, social isolation...gluten not so much try being allergic to corn and olives I get bloody reactions from shaking peoples hands, or putting my arm on a table to learn some kid spilled a soda with corn syrup on it that causes a rash sometimes if they have stuff I am allergic to on their hands, your damn lucky. SO fix it now or you will regret it when you get worse issues and allergies and truly have to live in a bubble or die in a bed withering in pain.
  2. 3 points
    Yeah it is storming here now, but I am a bit concerned for anyone more south....was jen from Austin or Houston? I do know one thing if any of our regulars needed a safe place to crash for a few nights a bit further away from my place is open. With the stress of a storm like this last thing you need to worry about is having safe food and living environment with this disease.
  3. 2 points
    If you are super sensitive (or have become super sensitive) there is an oats purity protocol used by just a few companies. The fields do not grow gluten containing grains for 4-5 years before the oats are planted, the fields are walked several times a season for any plants not belonging to be pulled by hand, and all the equipment and facilities used to harvest are dedicated equipment. It's a bit pricey, but it produces the only oats that I don't react to (although I have not tried all certified gluten free oats). There are a couple variations of magnesium. Some cause loose stools so check the source of magnesium (and make sure it's gluten-free). Calm I've used with no problem. If you are stressed, you will burn through magnesium faster. Roommates create some complications. I had a shared kitchen for a vacation this past year, and I was constantly cleaning. I'm so used to my gluten-free kitchen I became very aware of sinks being used to pour pasta water in, bread crumbs left from a cut sandwich, and how much gluten a simple sponge can be exposed to. I kept my sponge to clean my area in a ziplock bag next to the sink. And if I was cleaning fruit or veggies, I filled a large bowl with water to use so I wouldn't have to always be cleaning the sink. If you have wooden utensils, make sure they aren't be accidentally used. A friend was getting cross-contaminated from shared condiments. My celiac reactions for cross contamination are not gastro but neurological so I can't offer much with that. A proper glutening is the only thing that gives me gastro symptoms, and it is the most painful experience! In either case, I drink lots of water. I will drink a gallon on those days. Throw some Calm in there, but force fluids. I also use Ultima Replinisher (which I typically use after exercise) if I'm forcing fluids, and I drink mugs of warm broth if my gut is really not doing well. Hang in there, C. Hope you feel better soon.
  4. 2 points
    I'm only a year into this and was doing some research when I saw your post was at the bottom of the page. I've never posted here, but I felt compelled to reply. I feel what you are going through. I so get that. I'm so sorry you are stuck in your celiac rut. I understand the starting to fall into a depression. This does absolutely suck. Hugs to you and encouragement. You are not alone. College is hard enough to handle without the additional pressures of a chronic illness. You are studying nursing. This tells me you are a giver, and you likely put yourself last. Your body is telling you it's time to make it about you again. If you haven't already, please, let your professors know what is going on with your health. They should be able to give you some accommodations for when you have these fallouts to reduce some of the stress. For the time being, tighten up your diet. Go back to the simplest and cleanest whole foods until you can do a serious search of where the contamination is coming from, but try to get the healthiest foods in you. I know that is hard in college. If you don't eat a lot of grains, make sure you are getting vitamin Bs through supplements. I was not aware that I was B2 deficient, and that messed up my mind and my sleep. If you still struggle with your diet making you sick, try the AIP diet, Autoimmune Protocol diet. That made a huge difference for me. Mental health is an important as the physical. Even if you can't get your workout (my body needs a workout, too), go for a walk outside (if you are able) to get some sun and time with nature until you can. Study outside. Read outside. Just get outside. It might not seem like much, but I believe that saved me. When I was so depleted, just walking in the sun with music in my ears helped me start to get my mind turned around. It was the beginning of the change I needed to get it out of its depression. Walking turned into jogging, and now it's interval training and back to boot camp exercise. I'm sorry this is what you are going through. Courage to you! You are going to make an exceptional nurse because you go through these things. Your understanding and compassion will be far superior than others who have not lived this life. Remember you are never alone with this. That helps me at times when nothing else does. Love to you, and keep posting your progress if you have time.
  5. 2 points
    Keep a food diary and record everything you eat, condiments, how it is fixed etc. You might have a CC cuplrit and find it this way. Also with this disease it is common to develop random intolerance issues and allergies to foods. If you get glutened depending on your symptoms you can do some things to get over them faster. They make a enzyme to break down gluten, will not stop the antibodies and not cure bit it helps with some of the gut issues to pass faster. Teas, bone broth, plenty of liquids, and easy to digest foods, everyone is different on what these might be (for me nut flour/butter porridge as I have carb/grain issues). Pepto bismal, for most issues, Imodium for D, Magnesium Calm for C. You might want to help your supplements a bit, as during a glutening your going ot have more issues with absorption. Doctors Best and or Natural vitality Calm magnesium. Calm is a citrate and can be a bit rough on your gut so you have to start off at 1/4 tsp and slowly up the dose. Under times of stress your magnesium levels can really drop so this works wonders. Look up Liquid Health Stress & Energy and Neurological Support try 1tbsp each 3 times a day....that and hte magnesium will really work wonders with making the old happy guy you normally are. Under extreme issues I also turn to CBD oil and eat plenty of hemp and pumpkin seeds from GERBS allergen Friendly foods.
  6. 2 points
    So sorry you are going through this set back. You say you are getting glutened from random uncontrollable cross contamination. What are the things that you think you are getting CC from? Are you consuming oats? If so you may want to drop those for a bit. Are you drinking distilled gluten grain alcohols (safe for most but some of us will react) or some of the gluten removed beers? Some of us are sensitive to those. Do you have a significant other who is a gluten eater? If you are then do be aware they need to brush teeth before you can kiss. If you can tell us a bit more about what you think is getting you and what you are eating on a regular basis we may be able to help you find ways to avoid CC. Have you had a repeat blood panel to see if your antibodies are down? If not it would be a good idea.
  7. 2 points
    If you do have gene testing done be aware that most doctors only test for the two most common genes. There has been research that shows that other genes can also be associated with celiac. Not being positive for DQ2 or DQ8 is not a for sure that you don't have celiac. You have a good doctor to be checking for celiac. I was at one point thought to have RA and the gene I carry (DQ9) is more commonly thought to be an RA gene in this country but it is also now recognized as being associated with celiac. My RA symptoms resolved in time gluten free but that doesn't mean yours will.
  8. 2 points
    egs1707: I was writing the previous post in a hurry and really simplified the paragraph about the costs and benefits. So, I’d like to specify it because maybe it didn’t make any sense. I hope there are no economists here Alternative 1: Gluten-free diet Benefits: health, no unpleasant symptoms, no pain Costs: fewer meal/food options, social isolation in certain situations Result: Benefits are greater than costs. (=my opinion) Alternative 2: Gluten containing diet Benefits: no diet limitations – greater variety of foods, no social isolation Costs: serious health risks (those related to untreated celiac), putting your life at risk, living with the unpleasant symptoms every day Result: Costs are greater than benefits. (=my opinion) So, from my point of view, Alternative 1 is the right choice. This is a rational/logical approach. Btw emotions are ok.. in real life I don’t really like guys who hide their feelings all the time tbh. But don’t let emotions control you - there has to be a balance.. I hope you’ll make a good decision for yourself.
  9. 2 points
    Does anyone know any way the celiac community can help those of us that are having to sleep in and eat in shelters? Any organizations sending safe ready to eat foods that might need a contribution? Any organizations like the Red Cross helping that we can get in contact with etc... My heart aches thinking of folks like us having to deal with all the trauma and risking or having gluten reactions at the same time. There has to be something those of us distant can do to help.
  10. 2 points
    I would not say KarenG is clueless. I think she relies on studies (science) over company advertising. A study was done to determine if gluten-reduced beers are safe. It appears that they might be okay for some but not all celiacs. So, go ahead, drink the beer. No one is stopping you. But let's hope that you are not one of the celiacs that reacts. Read more about the actual study: https://www.gluten.org/wp-content/uploads/2017/02/170209_BeerStudy.pdf https://kelownaceliac.org/ Try reading Duck Foot's website carefully. No where does it say "certified". Notice that they are most likely following their attorney's advice stating "most" celiacs.... "Run, gluten, run! Yeah, people are freaking out about gluten and we get it; it’s hard to digest. But we like beer! Give us beer! Duck Foot Brewing Company uses a natural enzyme to break down the proteins in gluten, making it digestible to most people who are sensitive to gluten; even those with Celiac disease, like our co-founder, Matt. Extensive — like lots and lots of — testing shows that this enzyme reduces the gluten content in beer to undetectable amounts (0-5 ppm) and the FDA considers a food gluten-free if it falls below 20 ppm, so drink away, friends. And note: this enzyme is flavorless and odorless, but clearly not useless. It doesn’t affect the way our beer tastes." Don't you just love when advertisers talk about "lots and lots of testing" but fail to cite research/testing? I think it is called bullS#%*. 😂
  11. 2 points
    Dear admin, stop taking money for "News" post and start vetting them yourself first. If it is "Real" has scientific backing, and is actually useful to the community then post it as "News". Your going to seriously degrade the reliability and creditably of the site with "b$#@@#$$" articles. No offense intended but I am really seeing much more of this and it is getting annoying and disheartening. In this case the article starts off really bad with misinformation but then goes into some solid information about the disease. What should have been done in this case was instead of linking to it. You should have copied the information edited out the incorrect information and posted the relevant parts in our own forum. This article was typed out by a editor who obviously knows nothing of the disease and the first paragraph is a scare tactic/attention grabber that needs to be removed.
  12. 2 points
    This is so stupid! Why does our news service think this is a legit source for articles?
  13. 2 points
    The muscle soreness and a few of the other issues can associated with a Magnesium Deficiency, at EXTREMES it normally also has a odd kind of skin feeling were you feel needle pricks or rolling fire on your skin. Mildly and beginning you normally are just tired, fogged, muscle aches, and cramp a lot especially in the mornings with your legs. B-vitamins full spectrum is another issue of concern, and vitamin A. If your doing a full on AIP diet there is a high chance these could be deficient. I would suggest Stress & Energy by Liquid Health and the neurological support from them. 1 tbsp each 3 times a day I swear by these. On the magnesium depending on other symptoms. If you have D then Doctors best as it is easier on the gut. If you have C then you should look at Natural Vitality Calm and start off with 1/4tsp and slowly up your dosage over a week to the full dose or where you start to have looser more normal stools. As others mentioned you should also go get your antibodies checked. Perhaps something snuck in, or one of your staples in your life has a contaminated batch, who knows could be a soap, shampoo, medicine, spice, condiment, beverage, etc.
  14. 2 points
    My bakery officially launched a campaign yesterday to raise money to send food and supplies to the San Antonio food bank. Our goal is to send sets of both Gluten Free foods and a set of Allergen Free food to help. We are committing all profits made this week on sales and orders to the cause, and accepting donations. I am looking at logistics and viability of making shelf stable snacks and packaging them also from my bakery to send over (candied nuts, seasoned seeds, dried fruits). Yesterday we did dairy free thai fried ice cream and collected $36 not much but a start.
  15. 2 points
    A couple more things I just thought has your GP rerun a celiac panel to make sure that gluten isn't somehow creeping in? That should be done to make sure the hairloss isn't gluten related. Can you think of any new food, shampoo etc that you began using before the loss started? For example if I use a shampoo with soy protein that will cause me to lose hair as will eating it. Of course that may not apply for you but just throwing some thoughts out there.
  16. 2 points
    NOT at all odd, there is NCGS and it is a real thing, the symptoms are mostly the same, as to damage there is a form that causes Gluten Ataxia, which is nerve and brain damage as your immune system attacks them in response to gluten. Gluten ataxia can be present in celiacs and non celiacs with a form of NCGS. SO yes your could be doing long term damage to yourself and should stick to a gluten-free diet. Yes you can probably tell your friends your celiac or tell them your NCGS. There are many things you can say, or play with. and it does not have to be so limiting just bring your own food to events. I know there is a comprehensive post somewhere here started by one of our NCGS members. I have a small notepad of notes from when I was studying it for someone else I will post. IF your interested in Gluten ataxia I have a medical study I can dig up that compares gluten sensitivity & celiac in relations to gluten ataxia. 1. Acne, Flushed Skin, or Rashes Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushed cheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back. 2. Distended Stomach or Bloating A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease. 3. Diarrhea, Gas, or Constipation These three symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because, especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea (frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet, namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods. 4. Brain Fog or Migraines Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins. 5. Joint Pain or Numbness in Extremities Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limb being “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficient in Magnesium, B-vitamins
  17. 2 points
    Go Picnic has donated to tornado disasters in the past. At one time, they were trying to get the Red Cross to stock some - but not sure how it went. IN the past, The Red Cross basically said that 'beggars can't be choosers". I think the Red Cross does great work, but I hope in the years since the Joplin tornado that thinking has changed.
  18. 2 points
    I am so excited for my kids (ages 21 and 19). They had the blood test and it was negative for both. So happy for them. However, we know it may be dormant and can appear any time. Mine was dormant until last year.
  19. 2 points
    I understand your desire to conceive because the clock is ticking! I had my daughter at 39. The few years prior I had been ill. My doctor wisely (he had two children) advised me that I should postpone pregnancy until I was healthier. It is not just maintaining the pregnancy, but dealing with baby afterwards. He was so right! My daughter was healthy and I was able to give 100% to her. I enjoyed her infancy and toddler years....all the years because I felt well. Is there anyway for you to quickly get that gastroenterology appointment? You do need to be on gluten for the biopsies. It might be wise to rule out other GI issues that might be occurring as well. Finally, learning the gluten-free diet takes time. Mistakes are always made. Cross contamination is an issue. With a toddler in the house, I would recommend the entire household going gluten free, at least while you are pregnant. Miscarriage does happen with celiac disease, so allowing time to heal and learn the diet to prevent re-activating celiac antibodies are critical. I just had one daughter. I never went on to have another. She is enough. She is thriving and socially involved with all her cousins, so she is not missing out on not having a sibling. Just another thing to think about.
  20. 2 points
    When not wait 6 months, until you are healthy? Untreated Celiac is known to cause miscarriages. Low iron and wonky platelets aren't good for a pregnancy, either. http://www.cureceliacdisease.org/faq/will-exposure-to-gluten-during-pregnancy-cause-any-problems-with-the-baby/
  21. 2 points
    So because I have been obsessively thinking and reading about all things celiac lately, I mentioned this curious observation (and the forehead one which we both are entertained by!) to my celiac husband, and it happened to be while we were taking a snack break watching last week's Game of Thrones. (Any other fans out there?) We decided Little Finger (on the show) is probably such an a$# because he is an undiagnosed celiac, badly 'glutened,' with severe neurological/psychiatric complications.....
  22. 2 points
  23. 2 points
    There is a real problem with probiotics labled gluten free having gluten in them. There are some articles on the issue. https://mobile.nytimes.com/blogs/well/2015/05/19/many-probiotics-taken-for-celiac-disease-contain-gluten/?referer= As a result, I stick with Klaire Labs. Only a smaller dose because I am of the opinion too much of anything is not good. I am SIBO negative.
  24. 2 points
    Just a few more ideas: I agree that it's better to have your own copies of the results, if possible. You could see 1) which tests exactly were run and 2) if the results were really 'normal' or maybe borderline low/high for some of them. 3) We don't know when exactly you were tested.. if it was a year ago or so, some of the levels might have changed. 4) Doctors can't be trusted 100%. If a doctor is very unprofessional (like my current GP :-) ) then it's just better to see the results yourself and interpret them yourself. Good luck.
  25. 2 points
    Hi David, there are 3 different conditions basically: Celiac disease, non celiac gluten sensitivity and wheat allergy. Celiac disease - blood tests: Gliadin IgG Gliadin IgA Endomysium IgG Endomysium IgA ttg IgG ttG IgA total IgA - this is not a celiac disease test as such but your total IgA level - some people are IgA deficient so it has to be checked so that you can be certain that the results of the other tests are valid YOU HAVE TO EAT GLUTEN DAILY FOR THESE TESTS TO GIVE ACCURATE RESULTS. NCGS: there are no tests available - symptoms getting better on the gluten-free diet 'is the test' Wheat allergy: another immunoglobulin class is used: IgE Yes. Headaches, fatigue, nausea, GI issues are common. I'm not so sure about nasal congestion and being feverish - maybe allergy more likely than celiac disease/ncgs for these two. (Sorry about mistakes - not a native English speaker.)
  26. 2 points
    I wasn't trying to suggest not to take it seriously, or that it isn't celiac, or anything like that. Just that there might be manifestations of a problem with wheat that won't show up in her daughter's upper intestine. To be clear, even if they don't, I absolutely believe her daughter may have a serious and complicating problem with wheat or gliadin, that should still be followed up on by mom & her daughter's docs. And if it might show up somewhere else (with allergy, inflammation testing, or other IgG testing or celiac testing) I'd just want her to consider trying all avenues so that she isn't blown off by doctors telling her it can't possibly be celiac. I admit I am just learning, and I certainly don't know enough about the other bowel tests run to speculate of what sort of screening this was (but that one result of "20" in a five year old, when "20.1" is equivocal I would also be curious about as a mom!) Finally I posted in kind of a hurry. If I wasn't clear, or if it sounded like discouragement to pursue more info, I totally apologize. Gemini, thinking about what you said about the AGA tests -- -"The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable. They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. " I have been wondering about why they are being moved away from too. I know that the specificity and sensitivity of these tests is medically considered not as high -- but from what I understand I think that is because they were showing high in more people where subsequent endoscopic biopsy didn't show measurable 'celiac' damage.... Which to me actually begs a whole series of other questions. It is well established in the medical community that reactivity to wheat in some immune-mediated way (IgE - allergy, IgG - Allergy, NCGS, & Celiac, IgA - celiac) is actually really common - up to 10% of total human population by conservative estimates. I've been reading more of Dr. Alessio Fasanos papers on zonulin / interactivity with gut wall being affected by gliadin (one of the protein pieces of wheat that acts as a mimic -- also to thyroid hormone (and potential others!)) and potential links/ causation to literally dozens of other autoimmune conditions and also his 2014 interview on why the endoscopy isn't considered the gold standard of celiac diagnosis or even silver or copper anymore because it would be so much better to catch this condition before significant and measurable damage to the upper intestine happens. And honestly, I don't (yet) fully understand the eight million things I have been reading in the last three weeks. But I am reading them because my kid popped high on one of these serology markers, is symptomatic of the disease, has strong family history -- but when the endoscopy showed no damage (yet) we were told it can't possibly be celiac. And if I hadn't decided to post to this board, and seek more info, I might have moved on. And I'm really glad I didn't. And I am really grateful to the support I've found on this board. In the meantime, we are currently waiting for the second more extensive rounds of blood testing for daughter one, and first rounds on daughters 2 and 3. Daughter 3, who is only 3, has now had four consecutive bowel movements covered in white, or with really weird looking white stringy patches that are making me very concerned she might be having possible gallbladder or liver complications from unfound celiac -- while I am sitting around feeding her more gluten so I don't invalidate a future possible endoscopy! This way of finding this disease SUCKS. It totally sucks, and it is completely stressful, and I am definitely certain that we are getting all wheat and gluten the hell out of our house and soon. At this point, I honestly believe that daughter #1 has what-will-become-celiac disease -- but may wind up without a diagnosis (an annoying potential problem with school interactions and trying to get them to take it seriously) and I believe that it underscores a problem with the whole way this disease is currently defined and diagnosed. Many old school researchers and thinkers are saying you must have villous atrophy to be a celiac and some of the new research directions seem to be suggesting that there are sharp differences between the medical communities understanding of the adaptive immune processes at play versus people with innate immunity to gliadin. I am not a medical doctor, just another mom trying to figure-out-what-the hell is hurting my child's / (possibly childrens) health...but here is what I think: Hell yeah, original mom who posted - follow up like crazy on that AGA IgG result. Read a million medical studies and posts here. Follow up more. And if the doctors tell you it is nothing to worry about, or if they can't explain it or diagnose why, and you still have mom suspicion, ask another doctor. And if you still think the answers aren't great, ask again. And then, consider getting wheat and barley and rye out of your daughter's diet regardless of what the doctors say and see if her constipation clears up, and if she feels way better. (In pediatric cases shouldn't this be the FIRST advice to parents? Response to the diet??? I am frustrated by docs who have been telling me for weeks to potentially poison my kids more so their results are more definitive and less equivocal! And given my children's family history with this disease (dad, aunt, grandfather and more all diagnosed), as a parent I feel that it is a horrible ethical conflict to ask a parent to keep feeding their kids something that has a pretty high chance of being a culprit in making them sick -- it does not feel like 'do no harm' to keep giving my kids more gluten! It feels like I might be poisoning my kids and causing them other problems! All in the name of a positive endoscopy result??) At this point my theory of this disease is that it might attack dozens of other organs or systems in your body before it ever gets around to attacking your upper intestine. So if the AGA and DGP tests are finding this, but there is no findable gut damage, should that be called 'early celiac'? 'Wheat Intolerance Syndrome'? Something else? Hell, if pushed to make a super unqualified bet, I honestly suspect that all the variants of NCGS, gluten intolerange, IBS, the delayed / tcell mediated wheat allergy (not the histamine one), dermatitis herpetiformis, hell possibly even all 'eczema', not to mention a lot of other neurological problems, and mental health problems may all be caused by the same initial problem with gliadin. Maybe in people with 2 HL DQ2 alleles it attacks the intestines pretty early, in DQ8s maybe skin is hit early in, maybe in those with DQ7s it is hitting lower intestine or bowel, respiratory, skin, or brain&mood systems first...I don't know. But at this point I honestly think a large number of these people will likely wind up with villious atrophy at some future unknowable tipping point specific to their body / their genes / their environment / their exposures etc. if they live long enough. I don't believe "celiac can show up at any point" and "if you are in the risk group keep being tested every three years." Or that it shows up without explanation in a seventy-year-old who had eaten wheat their whole life. I believe it is showing up -- in literally hundreds of other symptoms and dozens of other diseases that it has triggered. But we aren't supposed to call it celiac or recognize the problem until it gets to the upper intestine. I suspect that for some people it goes there early. And for others it doesn't, but they are having just as many (just different) complications from the disease. Crap. I know this is a rant-y, and I offer my honest sincere apologies to all. I am currently really really worried about all three of my kids, and what I am contributing to in them by keeping gluten in their diets.... Other worried mom, totally sincere best wishes to you and your little girl.
  27. 1 point
    All good advice. When was the last time you had your antibodies checked (Raven's sensible advice). Maybe gluten is not really the culprit (but I suspect that it is). Ennis has great advice about keeping a journal. Texas Jen is right about the number of hours you are sleeping. You probably need seven or eight hours. As a nursing student, you probably already know this (studies support this). You might think you are functioning well, but maybe you are not. We have had a few late nights with my 4-AP--classes-this-year high school student. A lack of sleep causes a lot of errors. A lesson my kid is learning first hand (as her Dad and I bite our tongues). I get the need to exercise, but if push comes to shove, sleep trumps exercise. A lack of sleep can contribute to your anxiety and the gluten-monster behavior. Besides, you need time to rebuild damage you can cause from a strenuous workout. Don't stop, but I have learned to back off on "off" days. Listen to your body. You need sleep time as well to absorb/process all that you have learned that day too. Take care! We need good nurses.
  28. 1 point
  29. 1 point
    Did they check for candida? And what about your other levels? Keep a eye on your food diary, start rotating foods a bit more, see if you got a new intolerance. They seem to random come and go with me like REALLY random...last month was lettuce which is fine when I brought it back yesterday. Anyway other thoughts, make sure your getting a bit of everything, I sometimes slip and do not get enough vitamin A, Vitamin K, lycopene, selenium, or zinc when I rotate nuts, seeds, and veggies sometimes reaching a combination that is lacking one mineral or vitamin. I really do find those "Super Foods" that you need to up a bit for me it is oddly nutritional yeast, kale, cocoa nibs, coconut, pumpkin seeds seem to really boost how I feel. Sometime a probiotic and enzymes are a huge help. Might try a low carb (no fruit, grains, sugars, starchy veggies) for a week or two and There is this Candidia FX stuff on sale on Amazon that worked wonders for mine. There is a app for your phone on google called deficiency finder that is a life saver or use this for a less complete quick reference check to see if your getting everything.
  30. 1 point
    raven, thought of you when i read this post. it is important that we all remember that DQ 2+8 DO NOT cover ALL celiacs, and probably less than is actually claimed.
  31. 1 point
  32. 1 point
    Have you talked to your OB/GYN? I experienced hair loss after stopping the pill. I don't think that is unusual. I also lost hair after the birth of each child. If the loss is patchy you should see a derm but if it is a diffuse thinning this may be normal for stopping the hormones. It wouldn't hurt to maybe take a stress B for a bit.
  33. 1 point
    1.It is possible. It does sound like DH but a rash around the mouth can sometimes be caused by vitamin deficiencies. 2.You do have to be eating gluten for celiac testing. It sounds like you haven't been gluten free very long though and if you still have active lesions on the inside of your elbows and hands they might be able to biopsy. The biopsy needs to be done next to an active lesion not on it and they need to be looking for celiac antibodies to find them in the lab. 3. These are all symptoms that can be seen with celiac.
  34. 1 point
    Not for celiac disease. There are some alternative sites promoting it for autoimmune issues, but no studies have been made to my limited knowledge (I am not a doctor). Besides the side effects are GI issues! Not great if you already have a damaged gut. I assume you are concerned about hair loss? How long have you been gluten free? Have other I issues ruled out?
  35. 1 point
    Thank you , I look forward to reading these links. This is his 3rd autoimmune diagnosis. I have learned to question and not assume the Dr./office is all-knowing or current with the progress being made in the area of disease and better forms of treatment. (experience in this area sadly) I go in knowing I will have to learn and research everything to be his best advocate and not rely that I am being given all the information necessary. I appreciate insight from people actually living it. Thank you
  36. 1 point
    I like Thai Kitchen Rice Noodles. I find them in the Asian foods section. Less expensive than many gluten-free pastas and they make an Angel Hair that is my favorite. For stuff like elbows I often will get Tinkyada but it turns to mush when there are leftovers. For sauce I live in an area with a Wegmans so I buy their store brand. A very celiac friendly company if there is one near you.
  37. 1 point
    No, you are not in denial! I think that these studies often involve those who are not doing as well as they would like but that can be from so many different reasons. They may be making mistakes with the diet, they may have other health issues that come into play or just are not adjusting to the diet very well. Sometimes it surprises me how many resent having to follow a medical diet that seems insurmountable to them and that can add stress....and we all know what stress can do. I actually filled out the survey to let them know there are some of us with multiple AI disorders that are doing pretty well and are having little to no problems following the diet. I think a lot of it is perspective. I am just one who refuses to let all this do me in. I worked hard at healing and although things are not perfect, most of my grief is from my other AI problems and not Celiac. My brother had kidney disease from Type 1 diabetes and believe me, there is no comparing Celiac to that. With Celiac, there is a lot of hope because we can get better from a diet. My brother was facing a kidney transplant but he died before that happened. I think he had Celiac also but he was in deep denial. Not following a gluten-free diet when you may have Celiac will definitely rob you of quality of life!
  38. 1 point
    I have a history of gastritis going back 20-25 years back when I was still considered IBS. Well, well, well it returned with a vengeance with the gluten challenge. Now it will angrily flare with CC. Now, my cardiovascular system (flushing), my nerves, and stomach all react to gluten CC before it has a chance to hit my Intestine. The Intestines of course join the party too 30-45 minutes later. Based on my experience I second looking at a potential CC food or event that slipped by the radar. As Iceland girl said I find bananas and fresh ginger soothing as well. I don't do carbs at that stage for I have found personally my stomach likes a break and a rest. I usually give it banana, ginger, and smoothies etc so the stomach get a respite for a few days to ease its anger. Once it improves I don't personally find issues with spicy food etc. If the gastritis flares I look for gluten and corn CC as my culprits. Ironically I avoid OTC/Pharma to ease the gastritis for many contain corn and corn derivatives which will further exacerbate my problem. I had a acupuncturist suggest slipper elm before but I never tried it. I took the acupuncture treatment and did my usual self dietary protocol to appease the angry stomach. Good luck and quick healing my gastritis comrade.
  39. 1 point
    Hi Cristiana, Hope you are doing better. I saw the GI last week, and have info that may help you. First, I have an acid disorder ... overproduction. Prilosec only lasts for 16 hours, so it wasn't enough for me. I'm now on twice a day for a month to get this under control, then down to once a day. I hope to taper off after a month of once a day. As much as I hate Prilosec, it is really what I need right now and twice a day (30 min before breakfast and 30 min before dinner) is making a big difference. I now see that a once a day dose wasn't cutting it as I was still needing other stuff (Tums, Gaviscon, etc.) all day long, and my diet was so limited due to the excess acid. No scope needed at this time. I asked why I might tolerate a food one day, then the next day not. He said it has to do with circadian rhythm, time of day, and whether the sphincter is open or closed. So, just because something that was fine suddenly isn't, may not mean that we aren't tolerating it. Perhaps anything may have caused problems due to timing. He expected that I would be able to begin introducing more foods in 3 days. I waited 5 days, then foolishly had some chocolate, extra coffee, tiny bites of bacon, and some nuts. I could tell a slight difference, which tells me I'm not ready for all this yet. However I did not have any real setback. I am starting to expand my choices, like having oatmeal with soymilk or macadamia milk. Looking over this journey, I would suggest that anyone in a similar situation go see their GI ASAP. I was communicating with the GI office via email and phone, and was not getting the best advice. I think going in person made a huge difference; also I took the time before going to organize and summarize the history and current symptoms, so that I could zero in on just that and get the results I needed.
  40. 1 point
    How frustrating to have to wait so long to see the doctor and get your ultrasound results. My cholesterol has always been high (total 250 when I was 18) and got a little higher after going gluten free but that may be due to menopause at the same time. Several ultrasounds have shown nice clear carotid arteries, and a CT scan showed no calcium in my coronary arteries, so I won't take a statin. But if there was actually proof that my high cholesterol was hurting me I would not hesitate to try one. They do help some people.
  41. 1 point
    They are way better, to me at least. Not as super sweet! Oh gosh I need to find them locally now...
  42. 1 point
    Celiac can be dormant for years, and suddenly come up. It is normally genetic, and if any others in your family have suffered from any of the symptoms in the past this could be a sign. There are over 200 different symptoms for this disease and it varys from person to person. I grew up with my symptoms slowly showing up, nothing major. In about Jr.High I started being very fatigued and tired all the time randomly throwing up developed lactose intolerance. I was having to live off energy drinks to try to stay awake and active in HS. Still vomiting on some meals, constipation set in and it was normal for me to go once every 5-11days (some develop C some D for the bowl issues). It was not until later when I did something stupid and shocked my immune system that my symptoms changed to neurological with gluten ataxia causing numbness, brain fog, confusion, that I started trying it figure it out. Took a while but we finally found out it was celiac disease and then all the little things sorta came together. We have many members here who had NO symptoms for years then something happened to shock the immune system or it was just spontaneous and came up. The gene again can be dormant for years and even stay dormant for a lifetime. I would suggest talking to your doctor getting a FULL celiac panel before going gluten-free and if you want you can post the results here. A endoscope and multiple biopsy is the standard check for celiac where they look for villi damage in the small intestine caused by the disease. NOTE you have to be eating gluten daily for the testing to work, at least half a slice of bread a day is suggest. Some say now 1-2 slices of bread a day. You only mentioned the TTG but there are several others that are normally checked for diagnosis. If she does have celiac then dealing with it is simple and she is lucky you caught it early on before other symptoms and food intolerance issues came up. Unlike other AI disease the trigger for celiac is gluten in even trace amounts and cross contamination. Removing gluten foods, condiments, products from the living environment and cooking all of ones meals in a gluten free environment leads to a healthy life, and disappearance of symptoms on a road to healing. This community here on the forums is very supportive and can give tons of tips on living life with this disease. If you want you can go ahead and read the newbie 101 section and I can post a list of gluten-free food options so you can see there are pretty much gluten-free versions of the normal staples, your just basically changing brands and having to be careful and read all ingredients. For now stay on gluten til the testing is done. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/
  43. 1 point
    I just want to add one more thing.. to give you an example.. There is no logic in this: The fact that 99 people out of 100 don’t have celiac doesn’t imply that 99 people out of 100 are fit and well. Almost everyone has some kind of a health issue. Imagine 100 people. Person no. 1 has diabetes. No. 2 has thyroiditis. No. 3 is infertile No. 4 is disabled. No. 5 has cancer. ... ... ... No. 100 (you) has celiac. Do you still feel like the unlucky one? Again, I don’t mean to offend you. I’m just convinced that a shift in your attitude would help you a lot. Good luck.
  44. 1 point
    Hi, we wanted to share with you an approach that helped our child (7) with her constipation. This is the formula that helps her go to bathroom every day without any discomfort (soft stool). 1 tablet of Probiotic Culturelle Chewable per day PLUS 2-3 Honest Organic Juice (has 8 gr of sugar) per day. Water would be better than juice, but she does not want to drink water, so we have to give her this juice. It took us about 1 month-1.5 month for the probiotic to start working. For years we could not figure out why is our child constipated, she ate a lot of fruits (fiber) but that was not the problem, the problem was lack of water, she drank only a bit per day. Honest Organic Juice has enough water inside, but we think that the probiotic culturelle tablet is the most important ingredient. The importance of water intake is huge since the water softens stool. Probiotic tablet with plenty of water per day, would be the best approach, but she does not like water. Our child goes to bathroom now 2-4 times per day, for 2 months already, so we were concerned and asked her pediatrician is that ok, and the doctor said that it is fine and that we should continue with probiotic, and reduce juice, but that’s her only water intake. This helped us and we wanted to share the information with you. Hopefully, this info will help you too.
  45. 1 point
    There is nothing wrong with your English! You've been quite understandable.
  46. 1 point
    Why? Why would you take a drug for SIBO prescribed by a GP/PCP? You should be evaluated by a GI! Get tested! You were diagnosed three months ago. At the beginning (mid June) you were in denial. You talked about gradually going gluten free. You ate out at Fuddruckers and most likely at other places where you might have been exposed to gluten. Intestinal healing can take months to years to improve. Why? Because most people make dietary mistakes. The learning curve is steep. Learning to correctly read labels and avoiding cross contamination is hard! Not impossible, but it takes time. Food intolerances can develop, so gluten is not always the culprit. I urge you to get a second opinion from a GI. Every drug has a risk. Make sure you are treating the right thing. Have you had follow-up testing to confirm if your celiac antibodies are going down? Do that before blaming SIBO. Consider trying the gluten-free Fasano diet for a few weeks. Changes to your diet for the short term is safe. Taking drugs are not. There is no easy fix for celiac disease. It took time for you to get sick and it will take time for you to heal. I thought you were considering a dietitian consult out of the San Diego celiac center? I would seriously consider seeking a celiac-savvy dietitian. You could have SIBO, but I would bet (note I am not a doctor) that celiac disease is the cause of your current issues. At least rule that out first!
  47. 1 point
    The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable. They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. I have full blown Celiac Disease and I failed both AGA tests at diagnosis by high numbers but I was 46 years old at the time and was pretty much in the late stages of distress from undiagnosed Celiac. So, the AGA tests can very well indicate Celiac Disease but one positive does not prove it unconditionally. The IgG antibody is the most common circulating serum antibody in humans and IgA is the second most common. My thoughts on this as a non medical person are that in most 5 year old's, they haven't been alive long enough to build up enough of an antibody response to trip most of the tests on the panel. But, interestingly, she tripped the IgG class, which is the most common and plentiful and may show a positive sooner than the IgA class of antibodies. This could a total BS line of thinking but I believe if she does have Celiac, it's only a matter of time and gluten consumption before the IgA tests are tripped also. With a family history of Celiac, this should not be discounted as a nothing result. You could move on to a biopsy but they may not find damage even though she may have Celiac. It's hard to diagnose in adults, never mind a small child who may just not have enough damage yet.
  48. 1 point
    Hi, My 13 year old daughter has recently been diagnosed with Celiac Disease. I was wondering if there is any support group in the GTA. We live in Richmond Hill and would be willing to travel if such a support group existed.
  49. 1 point
    I understand them not wanting to put him through unnecessary procedures but the alternative is to let him suffer for a longer period of time then? Tell the docs that if nothing else has been found in two months other then the positive celiac panel then common sense dictates when you hear hooves think horses! If they don't find the horse THEN they can then start looking for the God damn zebra. Jesus. Who are they, Greg House? My wish for you is that you get a very empathetic GI doctor who is a parent and takes one look at your son and expedites the endoscopy process so he can get to healing. Hugs to you and your little one.
  50. 1 point
    I've just about given up making bread from scratch....since there are just 2 of us it is easier to buy it....I like Rudi's multi-grain and purchase it when on sale or when I have a coupon. I do have 2 bread machines, and since I have some Namaste perfect flour blend on hand, will give this a try after the holidays. I made the mom's molasses bar recipe on the package of Namaste and they came out perfect, very tasty. I live at 4,000 ft. altitude and baking bread is a bit of a challenge. Rather than try to modify your recipe, perhaps you may consider purchasing Annalise Roberts book, Gluten-Free Baking Classics for the Bread Machine. She has several Artisan bread type recipes using oatmeal, teff flour,sesame seeds, flax seed, sunflower seeds, etc. I have not used any of these recipes, but with the cold weather coming, just may bring out the bread machine and give it a try.