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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

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  1. 2 points
    You want to be off oral steroids 2 months before getting a blood test, dh biopsy or endoscopic biopsy. Off topical steroids about 2 weeks before getting dh biopsy. 60% of those with dh test negative on the celiac serum panel b/c the antibodies are concentrated mostly under our skin although we do experience the villi damage like other celiacs. A dx of dh IS a dx of celiac & no further testing is needed. We do tend to have patchier villi damage though & often experience fewer, milder GI symptoms than celiacs who do not have dh. See: https://www.cureceliacdisease.org/tag/dermatitis-herpetiformis/ Here's how a dh biopsy is properly done. If they take it ON a lesion then you're screwed b/c that is NOT how it's done. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ Just like for the celiac blood panel, you must be eating gluten every single day for the previous 12 weeks for the dh biopsy. It surely sounds like you have dh & you really should get a dh biopsy but you can't right now b/c you took all those steroids. Oh & btw, you don't even know how much I hate to tell you this but almost all of us get a rash backlash from hell when the steroids wear off. NSAID's tend to make the rash flare. High iodine intake is like throwing gas on a fire as far as the rash is concerned so you might want to go low iodine for 2 weeks or so & watch it thereafter when you eat large quantities of high iodine foods. See thyca.org for a low iodine diet (minus the gluten parts).
  2. 2 points
    I wonder if you called again and got another person - if you would get another answer? Its so frustrating. They don't test for gluten so thier lawyers say they can't call it gluten free. Based on the ingredients listed above,I would take it..... I mean if I was 20 years younger and wanting another baby. I hope it helps you.
  3. 2 points
    This article seems to understate the consequences of untreated Celiac. I lost a parent to heart failure from complications of undiagnosed Celiac. It may be a slow killer but a killer nonetheless. Also I did not have most of these symptoms. Instead I had obesity, high CRP, kidney stones, malnutrition, arterial sclerosis as well as adrenal fatigue and neuromuscular manifestations. The damage caused by Celiac is multisystemic and more complex than stated. Incomplete information may lead Patients and Physicians to miss crucial diagnosis.
  4. 2 points
    I have not taken Dapsone, and cannot provide any experience with regard to any potential side-effects coming off it. Here are some things that have helped me. People with DH appear to be more sensitive than "regular" celiacs, so an extra layer of caution may be required to get rid of the rash: 1. Don't eat out. 2. Don't eat food that you have not prepared yourself in a clean environment. 3. No oats, even those labelled gluten-free. 4. Limit high iodine foods (seafood, table salt, dairy) temporarily until rash fades. 5. Follow a dietary protocol similar to the Fasano diet (no processed foods, gluten-free or otherwise). After rash is under control, consider adding foods back in, taking note of effect on rash. Even if all these things are done, the rash could still take a while to go away completely. I have seen a big improvement in the last few months after really bearing down and doing the things I've listed. I do still get some sporadic "breakouts" in response to being cc'd, but much better than before.
  5. 1 point
    "I do not “do” a gluten free diet just because I want to be “trendy” or annoying or to lose weight or because it’s the “diet du jour........” https://glutenfreeeasily.com/in-defense-of-the-medically-necessary-gluten-free-diet/
  6. 1 point
    My daughter had the endoscopy when she was ten. It is a rather simple procedure. We went to the hospital early in the morning. They put her out first, which took just a few minutes. I got to stay with her and held her hands until went to sleep. Then the procedure itself took about 10-15 minutes. She came out, and stayed in a bed for an hour or two, then we went home by lunch time. My daughter went back to school the next day. You have to fast for the endoscopy. So, you want to the book the earliest appointment possible. It is not easy for kids to not eat anything for long periods of time during the day.
  7. 1 point
    So, this whole article is not for the people on this site. Would we allow people to post a gluteny bread recipe and say "And, of course, for diets of medical necessity (such as gluten-free eating for someone with celiac disease), this recipe unfortunately isn’t an option."? Or tell us about a great new Oreo flavor they love and say "And, of course, for diets of medical necessity (such as gluten-free eating for someone with celiac disease), these cookies unfortunately aren't an option."? Of course not because those people are obviously spammers or trolls.
  8. 1 point
    Hi, The endoscopy is not a big problem. They usually put the person out during the endoscopy. They put a 5 foot long, thin tube down the throat and a little way into the small intestine. The tube (endoscope) can take tiny bits of the lining of the small intestine for the biopsy. He shouldn't feel anything except he may have a slightly sore throat the next day. The endoscope usually has a camera so the Dr. can take pictures inside. There are several blood antibody tests. The Dr. should do the full celiac disease antibody panel. It includes deamidated IgA and deamidated IgG and EMA, plus total IgA. He should keep eating at least some gluten (wheat, rye, or barley) every day until all the testing is done.
  9. 1 point
    If the endoscope is done right in the hospital there is no trauma what so ever, you do not even notice they did a biopsy. You go in they put you on a IV (this might scare your kid) then when you go in they inject this white stuff into the IV and you get the best sleep of your life, and wake up with everything done with complete loss that time even passed and feel oddly refreshed....I swear less then a hour under on that feels more refreshing then a full night in my bed. THE WORST part about it will the the prep....they require you to take either 4pills of laxative and a full 8oz container of miralax mixed with 32-64oz oz of Gatorade or a full bottle of magnesium citrate and the miralax Gatorade mix....basically you have to be stuck on the toilet as your bowls empty the day before and not eat anything just liquids up to 2 days prior and the day of. Your child will never trust Gatorade again..... Once the testing is done come back here, if positive you can get pointers on cleaning out the house and making it safe for your child. You should also test any other direct blood relatives as this is genetic. Undiagnosed and untreated can lead to other AI disease, Nutrient deficiency related disorders, cancer, lymphoma, or eventual rupturing of the intestines or colon. Kids lucky early diagnosis means he can heal and get back to a normal life sooner....just has to take certain precautions with always bringing his own food and never eating what he is given by others.
  10. 1 point
    My biggest regret is that when my son was diagnosed with Celiac disease as an infant 42 years ago, we did not as a family go gluten free. I know that today he would be healthier ( he is in denial and noncompliant), I would not have suffered from the 18 various health complaints not typically related to Celiac I've lived with most of my life that got better with GFD only, and my wife (endometriosis and ovarian cancer), brother and father (both failed to recover from intestinal surgery, stitches wouldn't hold the seal and that resulted in sepsis) would probably still be alive. Do a family GFD and watch your family's health improve. Whatever a biopsy might show, he is still gluten sensitive and the only treatment is GFD. Wheat is a giant industry, so they will spend millions $ and do whatever they can to convince you to eat it.
  11. 1 point
    If food doesn't help quick enough I take Alka-Selzer (aspirin and bicarbonate) and that almost always works. Zantac and Pepcid are H pump inhibitors designed to reduce your stomach acid long term, which if not necessary will interfere with your digestive process leading to more malnutrition. And down the rabbit hole you go. They have recently been linked to kidney failure as an underreported side effect. Lawsuits have been initiated.
  12. 1 point
    I don't get it either. These food sensitivity tests have little to no real science behind them. Do what you want with the results.
  13. 1 point
    My family is still avoiding mechanically sorted “gluten free” oats and will continue to only purchase purity gluten-free oats (certified and grown in dedicated fields) until a safe testing method is in place (manufacturers, part of a stakeholder panel, are working on this). General Mills pulled gluten-free Cherrios from the Canadian market. They sell Cherrios but no longer labeled as gluten free until they can prove they are safe (unfortunately, the FDA (USA) does not worry about their celiacs — at least that is how I interpret it). https://www.glutenfreewatchdog.org/news/general-mills-removing-gluten-free-claim-from-cheerios-in-canada-implications-for-us-market/ Meeting minutes from AOAC indicates they are still working on it (Item V), so I am still not buying mechanically sorted oats.
  14. 1 point
    I recalled that my oldest daughter’s celiac disease presented as sharp pain that radiated around to her back. The docs All said “psychological”. Really? She had already had an appy when she was 8 so ruled that out. Nobody would believe my suggestion of celiac until they finally agreed to run the blood and other tests. Yep - celiac! I have three celiac children, all who presented differently. Only one has salicylate sensitivity along with me.
  15. 1 point
    I think there is some natural fluctuation. that is why there is a range not a definite number.
  16. 1 point
    Found a package insert on the Par site (linked). The inactive ingredients are corn starch, lactose monohydrate, magnesium stearate, pregelatinized corn starch and sucrose. It is great that they list the source of starch, not everyone does! None of those ingredients should contain gluten, so any gluten would be from contamination. Pharmaceutical manufacturers have to do rigorous cleaning of their equipment if it is not dedicated to a single drug, to be sure that the active ingredient doesn’t get into the next drug. I doubt that you would get much gluten from this generic. Hope this helps, good luck with your quest for fertility. Link to package insert doesn’t look like it worked, you can look it up from here. https://www.parpharm.com/products/product-catalog.php
  17. 1 point
    I looked on the FDA website and unfortunately Par Pharm is the only approved generic version. Did they say it actually contains an ingredient with gluten, or that it has a chance for contamination? I couldn’t find a label on the FDA site.
  18. 1 point
    Look up vasovagal reaction or response. Its not too serious, but you will want to try to manage it. Sometimes just recognizing that it will happen and sitting down, taking a deep breath, etc can help. Getting scared can make it worse.
  19. 1 point
    In my experience, costochondritis refers to inflammation of the cartilage attaching the ribs to the sternum. I haven't heard of itchiness as a symptom. (Costochondritis seems often to be a catchall for I don't know what you have but it's not a heart attack!) Anyway, have you talked to your doctor about vaccines? Once any lesions dry up, it may still be worth it to get the vaccine. I'm sorry for what you're going through - it sounds awful. I often check in with Dr Andrew Weil. Here's what he has to say about shingles (which he has had): https://www.drweil.com/health-wellness/body-mind-spirit/hair-skin-nails/shingles/ Plumbago
  20. 1 point
    Gluten free medically is different then fad, your food has to be prepared in gluten free dedicated cook ware. Gluten is a protein smaller then a germ. You sort of have to decon your kitchen and replace several kinds of cook ware like new colanders, wooden spoons, scratched pots, pans, Tupperware etc. New condiment jars (butter, jam, nut butter jars often get contaminated by spoon to bread/gluten food to jar. etc. Eating food prepared by someone else in a non gluten free cooking area on glutened cookware....gets you sick and one exposure can leave you sick for weeks to months. When you start going gluten free, then reintroduce gluten with this disease, your immune system goes on a rebound attack and the symptoms get much worse. SO after going gluten free, exposures to even tiny amounts will normally have much worse reactions. For now go to a whole foods only diet, eat only food you cook, avoid processed foods for now til you heal a bit. Simple meals low on sugars and carbs if you can to ease the bloat. Get crockpot liners and do crockpot meals of chicken and veggies in bone broth, or crockpot roast. Sheet pan meals on foil lined sheet pans of soft meats and veggies. Eggs are nice, and can be done hard boiled cand chopped up in meals, scrambled, or omlettes. Few simple hacks and to start off cheap. Foil Line Baking dishes/cookie sheets for safe cooking and easy clean up Freezer/butcher paper down on your counter for a safe prep area and again easy clean up Crock pot liners for your crockpot for safe cooking area, and easy clean up Nordicware makes microwave cookware for quick cheap, and safe ways to start off, they have omlette makers, steamers, grill plates with covers, rice cookers etc. PS It is also not uncommon for us to develop other food issues, sensitivities and intolerance issues. Keep a food diary and record what you eat, how you fix it, season it etc. and how you feel and time frames. Might help you find out other foods that are bothering your. Also remove dairy and oats, Dairy is a common issue as the enzymes to break it down are not really going to work that well with damaged villi, you can try reintroducing it when they heal. Oats are commonly contaminated. https://www.wikihow.com/Keep-a-Food-Diary https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  21. 1 point
    I don't worry about maltodextrin. Didn't the Natures Made say gluten-free on it? It usually does.
  22. 1 point
    Yeah sure a little will not kill you, bit it will still damage your organs. Residue or a crumb can leave many of us with so much pain and other issues it is ER worthy. Even if you do not feel all that bad, truth is with celiac disease your immune system will attack your intestines and destroy your villi regardless if your "feeling" it or not.....any amount, the body responds to gluten like a germ. No such thing as a mild case, gluten is gluten, and it triggers your immune system to attack you, no amount of gluten is safe for celiacs. Perspectively, would you eat a few of those little green tabs from a box of rat poison just because it is not enough to kill you? I would stick to gluten free on your trip, the damage is not worth it, complications are not worth it, and our reactions evolve over the years so you could be stuck in france and have a new or severe reaction and bomb the whole trip. France and most EU countries should have plenty of Celiac friendly foods and places. Do some research you might get lucky and find a dedicated gluten free restaurant up there.
  23. 1 point
    I know your body better than me surely, but you can also consider that some nuts are high in Fodmaps and that can be causing your bloating, not gluten. I had bloating and really bad abdominal pain, and it was just the Fodmaps. If so, you can only eat small amounts of them at a time (cashews, almonds, dried mango..). It should be only temporary.
  24. 1 point
    OK, this is what I know...... Stress can & does exacerbate many if not all skin issues & that covers the gamut from acne to hives to eczema to dh. I think climate could have an effect, sure. I know with my dh, when it rained or got real humid, the dh would itch a lot more & seemed to be more bothersome. BUT I have heard (not had personal experience) people with other skin conditions say humidity really makes things worse for them. I have also had people say that really dry air does bad stuff to their skin issues (people who live in places like AZ). Also if I got sweaty, my dh would be a pita. Yes, mostly bilateral/some unilateral happens with dh. I will also say that I have read medical texts that say eczema can present bilaterally too. 60% of those with dh test negative on the celiac blood panel. If you want to get a dh biopsy then the same rules apply as do for a celiac serum panel & that is you must have been eating gluten each & every day for the prior 12 weeks. A dh biopsy is taken ADJACENT to an active lesion. It is NOT taken ON a lesion. They take it on a lesion & the pathology is going to say arthropods or some such nonsense. The patterning the pathologist is looking for with dh is destroyed by the celiac antibodies themselves at the site of the lesion. This is why the biopsy is taken on clear skin adjacent to an active lesion. Also the pattern is easily destroyed by scratching so if you want to go get a biopsy then don't you dare scratch! Nearly impossible to do. What I tell people is to put a bandaid & over that, some really thick multiple layers of gauze padding. You go to scratch & you encounter that padding & it triggers you to be aware & not scratch.
  25. 1 point
    I am also glad, but I would definitely report your PCP. As a medical doctor, he should be protecting the best interests of the children. It is well known that celiac disease is genetic. There is no excuse for it in my personal opinion.
  26. 1 point
    Celiac.com 03/29/2018 - Fatigue is the most common symptom plaguing a majority of patients. Trouble sleeping, weight issues, PMS, headaches, fertility or libido issues, and achy joints are also very common and can all be affected by hormonal imbalance that continues after gluten has been removed from the diet. The trouble with trying to resolve such symptoms is that the root cause can vary. If every patient with fatigue had a thyroid problem, it would be easy to correct because we would know exactly where to look. If you're gluten intolerant you may have suffered from some of the complaints listed above prior to discovering your celiac disease or gluten sensitivity. But perhaps now, despite your gluten-free diet, some of these same symptoms continue to plague you. If so, read on. Let's review the list of symptoms and add a few more: Fatigue Trouble sleeping Weight trouble PMS Migraines Infertility or miscarriage Achy joints or muscles Allergies Light headedness Frequent illness Asthma While the list is long, believe it or not, there is a common cause to all of them. I'm not saying it's the only cause, but what I do wish to discuss is the reason why someone can be found gluten intolerant, successfully institute a gluten-free diet, yet continue to suffer from many of the above symptoms. There are two glands in your body called the adrenal glands. They sit atop each of your kidneys and they are the masters of multi-tasking! If I asked you if one part of your body was responsible for: Giving you energy, maintaining your weight, keeping your immune system strong, maintaining stable mood, anti-aging, controlling sleep quality, assisting with hormonal balance, keeping allergies at bay and more…what would you say? You might think to yourself that if there was one type of body part responsible for all those things then you had better start treating it well! You'd be very right in your analysis. As you've probably guessed the aforementioned adrenal glands are responsible for that very long list and, unfortunately, those very same adrenal glands tend to be quite stressed in the gluten intolerant individual. Why? Because adrenal glands are sensitive to, and get very stressed with, unstable blood sugar. Stable blood sugar comes from eating healthy food that your body finds nourishing. As you well know if you're gluten intolerant, gluten, for you, is a poison. Therefore years of eating gluten created unstable blood sugar and thereby put a tremendous strain on your adrenal glands. Because of the many, many jobs that the adrenal glands do, simply removing gluten as a stressor is typically insufficient to restore them to normal function. They need to be 're-set' with a nutritional and dietary program, to restore their good health. This explains why many who are gluten intolerant continue to suffer with the symptoms mentioned above. Therefore, even if your gluten intolerance has been diagnosed and you've instituted a strict gluten-free diet, if you haven't also found a clinician who understands and specializes in restoring health and function to the adrenal glands, you may very well continue to suffer with symptoms associated with adrenal stress. The good news is that the treatment to normalize adrenal function is not at all difficult. It is a completely natural program, when done correctly, involving no dangerous drugs or surgery. There are lab tests to determine the level of adrenal malfunction occurring but these are functional specialized lab tests rather than traditional ones. I mention this because I want to ensure that there is no confusion created when I mention adrenal function lab testing. The adrenal glands can become diseased but the disease isn't common. If you ask your traditional doctor to test for adrenal malfunction he or she will test for adrenal disease – once again a rare occurrence – and will likely pronounce your adrenal glands 'fine'. What I am discussing is malfunction vs. disease, two very different conditions. While adrenal gland disease is rare, adrenal gland malfunction is extremely common. It is this latter condition that we are discussing here. This is an important distinction because I want to make sure that if you are suffering from adrenal fatigue that you aren't given a 'clean bill of health' incorrectly. Unfortunately this happens often. If it took you a while to receive a diagnosis of gluten intolerance then you will understand this phenomenon. Sadly this area of health is fraught with misunderstanding and it is the patient who suffers, often unnecessarily. If you need any help finding a clinician to help you, feel free to contact me. Normalizing adrenal function is one of our areas of expertise and patients visit us for treatment, at our destination clinic, from across the country, as well as internationally. If we cannot find a clinician close to you that specializes in this then we are more than happy to see you here. The good news is that the treatment is natural and inexpensive. I look forward to hearing from you.
  27. 1 point
    Celiac.com 07/03/2015 - For people with celiac disease or gluten intolerance, accidentally eating gluten can have numerous undesirable consequences. Symptoms of gluten-exposure among people with celiac disease can vary, but main problems and complaints include: upset stomach, stomach pain, inflammation, diarrhea, gas, bloating, indigestion, heart burn, skin rash or breakouts, and nerve and arthritis pain, among others. If you're one of these people, then you likely work pretty hard to make sure everything you eat is gluten-free. But what can you do if you accidentally eat gluten? Officially, beyond simply waiting it out, there is no clinically accepted treatment for people with celiac disease or gluten sensitivity who accidentally eat gluten. However, there are things that many people claim will reduce the suffering and promote healing when this happens. Here are the best home remedies for accidental gluten ingestion, as submitted by readers to our gluten-free forum. The main goal is to reduce or eliminate the worst immediate symptoms, including pain, inflammation, diarrhea, gas and or bloating, etc. The secondary goal is to rebuild gut health. So what works? Or, what do people say works for them? The remedies listed below are not ranked in any particular order of importance or efficacy. Fasting—Recent studies indicate that fasting for a couple of days can help to reset the immune system, which might be beneficial for those suffering from an adverse gluten reaction. Be sure to check with a doctor before fasting, just to be safe. Digestive Enzymes-- For many people, digestive enzymes seem to help the bloating. Many people claim that such enzymes help provide relief, especially against small amounts of gluten. Two such products are Eater's Digest by Traditional Medicinals, and Gluten Defense digestive enzymes. Green tea or peppermint tea. Many people have reported that green tea is also helpful. Peppermint tea is said to promote muscle relaxation, and can help for gassy stomach issues. Strong gluten-free peppermints will work in a pinch. Imodium seems to help some people control associated diarrhea. If you have diarrhea, be sure to drink water with electrolytes to help replace lost fluids. Pepto-Bismol—Some people take Pepto-Bismol to help relieve stomach upset. Marshmallow root can help to sooth stomach and gas pain. Antihistamines—Some people claim to find relief with antihistamines, such as Benedryl, Clatratin, or Zyrtec. Often these are used in combination with other remedies Probiotics—Many people find probiotics to be helpful, especially as part of a general gut maintenance program. Probiotics are generally more helpful in advance of accidental gluten exposure, but many people take them after exposure. Either way, it certainly can't hurt. Broth—Many people with celiac disease, gut and/or nutritional issues turn to broth for help in building gut health and proper nutrition. Good old fashioned beef, chicken or fish broth can be a beneficial part of a healthy gut regimen. Broth also has many health properties beyond gut healing. Tummy Rescue Smoothie: This recipe was developed by a celiac.com reader in response to his own "gluten emergency.” The healing properties of each ingredient are also listed. Puree in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea. Tummy Rescue Smoothie: 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼-½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. Longer-term strategies include rebuilding intestinal health with an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics, including acidophilus for about a week to get intestinal flora back in order. This list is not intended to be authoritative or comprehensive. Nor is it intended as medical advice, or as a substitute for medical advice. As with any health remedy, do your research and make the choices that are right for you. If you have any thoughts or insights on how best to treat accidental gluten ingestion for people with celiac disease or gluten intolerance, please share them in our comments section below.
  28. 1 point
    Celiac.com 08/28/2008 - Gluten intolerance can affect all the mucous membranes of the body in sensitive individuals, including the bladder lining. I was diagnosed in 1996 with an incurable, progressive, painful disease called interstitial cystitis. The symptoms mimic those of a bad bladder infection, although most lab tests are negative for bacteria, and antibiotics generally do not help. I knew as a nurse how the bladder functions, and that it needs to have an intact lining to tolerate holding all the toxic wastes of the body prior to elimination. It made sense to me to try a dietary approach, and I had good luck immediately by excluding from my diet known bladder irritants like tomatoes, caffeine, chocolate, citrus, and alcohol, even though most doctors at the time gave diet little credit for a reduction in symptoms. Nevertheless, the disease did progress over time, and I eventually needed to take pain medications, anti-spasmodics, and other medications to enable me to function. Every urine test showed that I had significant amounts of blood in my urine. No one ever tested me for food allergies, gluten intolerance, or considered any other possible cause. No one suggested that my symptoms were part of a systemic dysfunction in my body. I had a painful disease, and they would give me as much pain medicine as I wanted, but there was no cure. I was no longer getting enough sleep to enable me to function well as a nurse. I made the choice to stop working for a few years to concentrate on rebuilding my health. I was in constant pain. It was about this time that I began turning to alternative practitioners for help, and started experimenting with my diet, as well as having food allergy and sensitivity testing done. I had some success eliminating the swelling in my pelvic area using castor oil packs, enough so that when I had increased swelling from eating a particular food, I could tell the difference. Careful observation showed me what did and did not negatively affect my bladder. Eliminating gluten resolved a long-standing rash on my legs, called dermatitis herpetiformis, and after about two years and a lot of alternative bodywork, my bladder began to significantly recover. It was the first area to show symptoms, and the last to recover. Now, twelve years after my interstitial cystitis diagnosis, my urologist readily agrees that gluten negatively affects the bladder in some portion of her patients, and that eliminating gluten leads to a reduction in symptoms. All of my urine tests are perfectly normal and I sleep at night. Still, there are almost no published journal articles linking gluten intolerance and the bladder. I am trying to get the word out there, specifically, the idea that we do not have to live with constant pain, and that what we eat can affect our health. My future goals include beginning an informal clinical trial in the form of a support group for patients willing to try a gluten-free diet as a treatment for chronic bladder symptoms. If anyone is interested in the link between bladder symptoms and gluten sensitivity, I have pages of anecdotes gathered from many people who have experienced healing on a gluten-free diet. The Connection Between Bladder Symptoms And Gluten Sensitivity - A Collection Of Personal Experiences* *Names have been changed to initials to protect individualsprivacy.The author has the originalweb-posts or other identifying information. A summary of web posts from icpuzzle@yahoogroups.com and intersitialcystitischronicpain@yahoogroups.com and personal communications revealing strong evidence of a connection between bladder symptoms and gluten sensitivity. This article is an adjunct/follow-up to the above article on gluten sensitivity and bladder disease. …”The main help came from W.’ssuggestion to try to eliminate wheat-barley-rye (gluten).The Elmiron was getting close it it’s maxwithout constantly abusing the situation with gluten…about three months ago Istarted eliminating gluten-carrying grains, “wallah” absolutely the mostsignificant change started happening about 3 or 4 days from the last day ofgluten. How much better am I now sincethen – about 500% better (close to where I was when I first noticed the IC,even though I didn’t know what was happening – close to TWENTY YEARS AGO). I am still of the opinion that some kind ofcritters have and maybe still play a part of this. I have taken every kind of antibiotic, with alittle success now and then, but not enough to kill it.” “It took about 3 months to seemild improvement, about a year to see moderate improvement, and about 2 yearsto feel much better. I am not 100percent symptom free, but most of the time I am a very manageable level ofsymptoms, and when I flare (from diet or sex) it is very short lived.I am down to one Elmiron a day (from theoriginal dose of 3) and I also do a gluten and sugar free version of the ICdiet, which I also think has helped me a lot.” “I have had IC for 30 yearspretty severely. It was only this pastyears that I got tested …and found out I had a severe wheat-gluten allergy tothe point that I cannot ingest one bite of anything with wheat or gluten…theysaid my whole digestive tract was inflamed…Over the years I knew I was wheat,dairy, and sugar intolerant but these (latest) tests are more specific and letyou know the levels. I feel muchstronger and have many days when I am symptom free. I finally feel different.” “I have started cutting wheat andgluten out of my diet, its been about 2 weeks now. I, like M., have IBS. I am feeling better every day.I am following a diet very similar toyours.Thank you for posting it again!” “I have had IC for over adecade. I have been on a gluten freediet for over 6 years and that has been the only thing that has given me anyrelief from the IC. I no longer take anymeds at all – haven’t even been to a doctor for the IC in several years.Glad to hear someone else is seeing thebenefits of the gluten-free diet for IC and getting the word out. I would definitely suggest anyone with ICgive it a try. It definitely gave me mylife back." “Where have you been for the lasttwenty plus years?You may have saved mylife.I have described these symptomsfor years to doctors and never got an answer that sounded even close to whatwas happening. Just “try these antibiotics”once in a while at the beginning (there was minimal change), but more and morethe antibiotics got more and more expensive with less and less effect if any atall, it even included the kill-all antibiotic – kills everything except me…Went to nerve doctor ($2,500 plus, pelvic x-rays (2 or 3 types).One of the urologists… never said anythingbut “prostatitis” over and over again. My head now also has a nearperfectly clear thinking ability, before it was always a bit cloudy even thoughI may not have been totally aware of it.The feel of carrying extra weight is now almost gone. The gluten issue may not be theonly issue I have – prostatitis is likely to be part of the pain problem, butthere is no question that the gluten issue has been a very, very large part andis now subsiding.” “I was tested for glutenintolerance but it came out negative but while I awaited results I went gluten free and I felt so goodI never went back. I have had a lot ofimprovement going gluten and sugar free as well.I can find rice pasta, lasagna etc.easily. It’s amazing how you don’t haveto try hard to substitute (for) it.” “I have gone from having to gowith urgency every 5 to 10 minutes and being in constant pain (especially atnight) to having almost no symptoms. I am not “cured”. I am still working on healing. I occasionally have a mild flare. Gradually I am able to add foods back into mydiet – a very different diet than before. Whole foods, more veggies, only whole grains (no wheat), no sugar, and anoverall more alkaline diet….There is help. There is hope.” “I am just into the first severalchapters of the book (Solving the IC Puzzle, by Amrit Willis, R.N.), but wantedto stop and ask if there were any people who were celiac or gluten intolerant thatalso suffer from IC. In my celiacsgroup, there are quite a few that have celiacs that (also) have IC.Autoimmune – allergy – poor lifestyle choices– toxic body – all related. So, I amwondering if there are others in this IC group that are glutenintolerant/celiacs or who have suffered from, have, or have healed fromautoimmune diseases…” “I have celiac disease also. I was diagnosed via a blood test about 4months before the IC thing came to a head. I disregarded the doctor’s warning to stay away from gluten/wheat.I went to a gastroenterologist because I feltlike I was having a stomach flu every 2 weeks. So I saw this guy and he gave me the blood test results (which Iignored) until finally, I felt so bad I decided to whit the gluten/wheat.I had a friend who has celiac really severelyand she told me that I might as well cancel my hydrodistention to test for ICbecause eliminating wheat/gluten might clear everything up for me. Unfortunately, I had thehydrodistention which made me much worse, IC-wise….Sorry for the long-windedanswer.I finally stopped taking theElmiron…So far so good.I really don’texpect to have a problem. It was justhard letting go. I don’t know which came first(the celiac or the IC).Looking back,every time I drank beer I always felt bloated right away. Classic example, on our way to skiing, wewould stop for two beers. Relievingmyself before getting back in the car, I would be dying for the bathroom beforewe reached our destination, 45 minutes later. I though this was normal.Isuppose it was the celiac and IC kicking in. Too bad it would take 10 years and 3 pregnancies later to diagnose it…” “I have been diagnosed withgluten sensitivity and am gluten-free. Since I was already eating very little in the way of grains at mynutritionist’s urging, I don’t find the diet that difficult to follow.I try to be very careful.” “I agree with these 2 types ofpastas. I also find that when I eatwheat (which is an allergy I have) that my bladder gets irritated…” “…So, W. your IC is totally goneright now – especially after cutting out gluten? I have known for years and years that I wasgluten sensitive as whenever I wouldn’t eat gluten or wheat, if I just atevegetables and protein my stomach would be soooo quiet.Hindsight is 20/20 – just wish I would havegiven up gluten years ago and maybe this wouldn’t have happened. I am checking into pelvic floortherapy and will have that done along with many other things – I am soterrified of this getting worse, absolutely scared to death. Thanks for your words ofencouragement and comfort.” (Personal Communication)“Suddenly some of the mysteriesof what's been called my "wheat intolerance"or "allergy" were resolved. In particular, I no longer thinkI'm crazy for suspecting a link between my 2.5-year-long urinary tract infection and the onset of my moreobviously wheat-related symptoms. Thanks so much for getting theword out, and sharing your experience!” (Personal Communication) “I about fell off my chair when Iread about your bladder stuff. I've seen 3 specialists (including adigestive doc and a urologist!!), a regular PCP, and a naturopath, andnone of them were willing to consider a link between wheat issues and my poorbladder's troubles. It was like the world lifted offmy shoulders - I'm not crazy! And my body is not the wreck I thought itwas at the ripe old age of 31!Seems funny to be exultant aboutprobably having celiac disease, but that's whatI've been since.”
  29. 1 point
    .....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.
  30. 1 point
    Yup that form scared the **** out of me even though I had an experienced doctor performing it. Being in a hospital operating theatre is also an experience I don't want to revisit in a hurry. Tbh the formal diagnosis doesn't really change much, in the UK it used to be a way to get discounted food but that's all gone now so apart from confirming what you already suspect there's not much to be gained from my experience anyway. Your English is fine, had you not mentioned it's not your native language I'd never have guessed Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety
  31. 1 point
    Exactly. Another biopsy would just mean additional stress and even if you found out the villi are healing more slowly than you expected, there wouldn’t be much you could do. You said you’re in your early 30s, right? Me too. I think I’ve read the younger a person is, the faster the healing. So I think you’ll be ok. I haven’t had an endoscopy/biopsy myself because I don’t trust doctors anymore – there are risks involved such as intestinal perforation and they ask you to you sign an informed consent so it would never be their fault if something happened. So I don’t even know if I’m a ncgs or a seronegative celiac. My symptoms have improved so much on the gluten-free diet that I don’t care about a formal diagnosis anymore. As you’ve probably noticed, I’m not a native English speaker. I’m glad that at least my English is good enough for me to be able read/understand everything I want to know about ncgs/celiac. You guys probably take this for granted :) If I were to rely on doctors and didn’t do my own research, I’d be screwed and still in pain 24/7.
  32. 1 point
    The general thinking: People can have a gene associated with Celiac. DQ2 and DQ8 are the most recognized Celiac genes. (Not the only genes associated with Celiac.) Something has to "trigger" the immune system to start attacking healthy tissue. Any illness, or stress can be a possible trigger. EBV has been mentioned by quite a few posters here. But honestly, you can make yourself crazy trying to figure out what triggered Celiac. If you have it, you have it and it would be more proactive to concentrate on a healthy gluten free diet. By the way, your dad should be tested (at least if he is anemic) . Men can be "silent Celiac" (not really having stomach upset symptoms, but still suffering vitamin defiencies). Female hormones tend to make symptoms worse.
  33. 1 point
    Celiac.com 02/20/2015 - Here is Celiac.com's most up-to-date list of gluten-free beers and alcoholic beverages. The gluten status of the products listed below is accurate at the present time. However, as product formulations can change without notice, it is best to verify gluten-free product status by checking the ingredients yourself, or by contacting the manufacturer. Unless gluten is added after distillation, all distilled alcohols are gluten-free. However, US labeling laws prohibit beverages that use cereal grains at any point in the manufacturing process from advertising themselves as 'gluten-free.' Many people with celiac disease choose to avoid distilled beverages that use cereal grains in the manufacturing process, while many others drink them with no adverse effects. So, when you do see a 'gluten-free' label on a distilled beverage, it means that no gluten ingredients have been used at any point in the production process. A List of Naturally Gluten-free Beers Anheuser-Busch Redbridge Bard's Gold Bard's Tale Beer Brasserie Dupont Forêt Libre Brasseurs Sans Gluten Glutenberg Blanche Brunehaut Bio Ambrée Brunehaut Blonde Bio Brunehaut Blanche Burning Brothers Brewing Coors Peak Dogfish Head Craft Brewed Ales: Tweason'ale Drummond Gluten Free Epic Brewing Company: Glutenator Ghostfish Brewery Glutenberg American Pale Ale Glutenberg Blonde Glutenberg Belgian Double Glutenberg India Pale Ale Glutenberg Rousse Green's Discovery Amber Ale Green's Endeavour Green's Enterprise Dry-Hopped Lager Green's India Pale Ale Green's Quest Tripel Blonde Ale Ground Breaker Corsa Rose Gold Ale Ground Breaker IPA No. 5 Ground Breaker Dark Ale Ipswich Ale Brewery: Celia Saison Joseph James Brewing Fox Tail Lakefront New Grist Ginger Style Ale Lakefront New Grist Pilsner Style Minhas Lazy Mutt Gluten Free Mongozo Premium Pilsener New Planet Belgian Style Ale New Planet Blonde Ale New Planet Pale Ale New Planet Raspberry Ale New Planet Seclusion IPA New Planet Tread Lightly Session Ale Nickel Brook Gluten Free Nouvelle France La Messagère Nouvelle-France Messagère Aux Fruits Nouvelle-France Messagère Red Ale Schnitzer Bräu Hirse Lemon Schnitzer Bräu Hirse Premium Sprecher Brewing Company's Shakparo Ale Steadfast Beer gluten-free Blonde and Pale Ales Steadfast Beer Company's Oatmeal Cream Stout To Øl Reparationsbajer Gluten Free Whistler Forager A List of Gluten-Removed Beers Alley Kat Scona Gold Kölsch Brunehaut Bio Tripel Estrella Damm Daura Estrella Damm Daura Marzen Lammsbräu Glutenfrei Lager Beer Mikkeller American Dream Gluten Free Mikkeller Green Gold Gluten Free Mikkeller I Wish Gluten Free IPA Mikkeller Peter, Pale And Mary Gluten Free New Belgium Glutiny brand Golden and Pale Ales Short's Brewing Space Rock Stone Delicious IPA Sufferfest Brewing Company Pale Ale and Lager Widmer Omission Lager Widmer Omission IPA Widmer Omission Pale Ale Wold Top Against The Grain Wold Top Marmalade Porter Wold Top Scarborough Fair IPA Gluten-Free Hard Cider Most ciders are fermented from apples or other fruits. Most are safe, however, some add barley for enzymes and flavor. Read labels! Gluten-free hard cider brands include: Ace Pear Cider Angry Orchard Blue Mountain Cider Company Blackthorn Cider Bulmer's Hard Cider Crispin Cider (including Fox Barrel products) Gaymer Cider Company Harpoon Craft Cider J.K. Scrumpy's Organic Hard Cider Lazy Jack's Cider Magner's Cider Newton's Folly Hard Cider Original Sin Hard Cider Spire Mountain Draft Cider Strongbow Cider Stella Artois Apple and Pear Hard Cidre Woodchuck Woodpecker Cider Gluten-Free Wine All wines, including brandy, champagne, cognac, port wine, sherry, and vermouth are safe for celiacs. Gluten-Free Wine Coolers The majority of wine coolers are made from barley products. Gluten-free versions include: Bartle & Jaymes - all EXCEPT malt beverages Boones - all EXCEPT their malt beverages Other Gluten-Free Alcoholic Brews, Wines and Spirits Include Brandy Campari Champagne Cognac—made from grapes Cointreau Grappa Midori Prosecco Khalua Coffee Liquer Kirschwasser (cherry liqueur) Old Deadly Cider Sambuca Vermouth Gluten-Free Distilled Alcohols Unless gluten is added after distillation, all distilled alcohols are free of gluten. However, US labeling laws prohibit beverages that use cereal grains at any point in the manufacturing process from advertising themselves as 'gluten-free.' So, when you do see a 'gluten-free' label on a distilled beverage, it means that no gluten ingredients have been used at any point in the production process. Gluten-Free Gin Most gins are made with gluten-containing cereal grains. The final distilled product does not contain gluten, but cannot be advertised or labeled as gluten-free. Many people with celiac disease choose to avoid these beverages, while many others drink them with no adverse effects. Gluten-free gin brands include: Cold River Gin—distilled from potatoes Brands of standard gin include: Aviation American Gin Beefeater Bombay Bombay Sapphire Boodles British Gin Booth's Gin Gordon's Leopolds Gin New Amsterdam Gin Seagram's Tanqueray Gluten-Free Rum Distilled from sugar cane, most rums are gluten-free and safe for celiacs. Beware of pre-made drink mixes, such as those intended for piña coladas — many of these contain gluten ingredients as flavoring. Gluten-free rum brands include: Appleton Estate Jamaica Rum Bacardi—only Gold, Superior, 151, and flavored Bayou Rum Bundaberg Rum Captain Morgan Rum Cruzan Rum Malibu Rum Mount Gay Rum Meyer's Rum Gluten-Free Sake Fermented with rice and Koji enzymes. The Koji enzymes are grown on Miso, which is usually made with barley. The two-product separation from barley, and the manufacturing process should make it safe for celiacs. Gluten-Free Tequila Made from the agave cactus, all tequilas are gluten-free and safe for celiacs. Gluten-free tequila brands include: 1519 Tequila 1800 Tequila Cabo Wabo Cazadores Chimayo Don Julio El Jimador Herradura Hornitos Jose Cuervo Patron Sauza Gluten-Free Vodka Vodkas distilled from potatoes, gluten-free grains or other gluten-free ingredients contain no gluten ingredients and can be labeled as gluten-free. Gluten-free vodka brands include: Corn Vodka—Deep Eddy, Nikolai, Rain, Tito's, UV Grape Vodka—Bombora, Cooranbong Potato Vodka—Boyd & Blair, Cirrus, Chase, Chopin, Cold River Vodka, Cracovia, Grand Teton, Karlsson's, Luksusowa, Monopolowa, Schramm Organic, Zodiac Rice Vodka—Kissui Sugar Cane—Downunder, DOT AU Vodkas distilled from cereal grains include: Many vodkas made with gluten-containing cereal grains. The final product does not contain gluten, but cannot be advertised or labeled as gluten-free. Many people with celiac disease choose to avoid these beverages, while many others drink them with no adverse effects. Barley Vodka—Finlandia Grain Vodka—Absolwent, Blavod, Bowman's, Fleischmann's, Orloff, Polonaise, SKYY, Smirnoff, Stolichnaya, Wheat Vodka—Absolut, Bong Spirit, Danzka, Grey Goose, Hangar One, Ketel One, P.i.n.k Vodka Rye Vodka—Belvedere, BiaÅ‚a Dama, Platinka, Sobieski, Starka, Wisent, Wyborowa, Xellent Swiss, Å»ubrówka Gluten-Free Whiskey Nearly all whiskeys are made with gluten-containing cereal grains. The final product does not contain gluten, but cannot be advertised or labeled as gluten-free. Many people with celiac disease choose to avoid whiskey, while many others drink it with no adverse effects. Gluten-free whiskey brands include: Queen Jennie Whiskey, by Old Sugar Distillery is made entirely from sorghum Whiskeys distilled from cereal grains include: Bourbon—Benjamin Prichard's, Booker's, Buffalo Trace, Jim Beam, Early Times, Ezra Brooks, Jefferson's Bourbon, Knob Creek, Makers Mark, Old Crow, Old Forester, Old Grand-Dad Canadian Whiskey—Alberta Premium, Black Velvet, Canadian Club, Crown Royal, Tenesse Whiskey—Jack Daniels, George Dickel. Irish Whiskey—Bushmills, Jameson, Kilbeggan, Redbreast, Tullamore Dew Japanese Blended Whiskey—Hibiki, Kakubin, Nikka, Japanese Single Malt Whiskey—Hakushu, Yamazaki, Yoichi Rye Whiskey—Alberta Premium, Bulleitt Scotch Whiskey Blends—Ballentine's, Bell's, Black Grouse, Chivas Regal, Cutty Sark, Dewar's, Famous Grouse, Johnnie Walker, Teacher's, Whitehorse Scotch Whiskey Single Malts—Bowmore, Glenfiddich, Glen Grant, The Glenlivet, Glenmorangie, Highland Park, Knockando, Lagavulin, Laphroaig, Macallan, Monkey Shoulder, Singleton, Talisker Taiwanese Whiskey—Kavalan Classic Gluten-Free Drink Mixes Club Extra Dry Martini (corn & grape) Club Vodka Martini (corn & grape) Coco Casa and Coco Lopez Brands: Cream of Coconut Jose Cuervo Brand: Margarita Mix and All Jose Cuervo Blenders Master of Mixes Brand: Tom Collins, Whiskey Sour, Strawberry Daiquiri, Sweet & Sour Mixer, and Margarita Mix Mr. & Mrs. T—Except Bloody Mary Mix TGI Friday's Brand: On The Rocks, Long Island Ice Tea, Margarita, Mudslide, Pina Colada, and Strawberry Daiquiri. TGI Friday's Club Cocktails including: Gin Martini, Manhattan, Screwdriver, Vodka Martini, and Whiskey Sour mix. Other Gluten-free Beverages Mixes & Cooking Alcohol Club Tom Collins—made with corn Diamond Jims Bloody Mary Mystery Holland House - all EXCEPT Teriyaki Marinade and Smooth & Spicy Bloody Mary Mixes Mead—made from honey Mistico: Jose Cuervo Mistico—agave and cane Ouzo - made from grapes and anise Spice Islands - Cooking Wines - Burgundy, Sherry and White Also Godiva products contain gluten as do Smirnoff FMB's, Twisted V, and Smirnoff Ice.
  34. 1 point
    I'm 28 and have a hiatal hernia. It causes major issues every now and again--GERD, stomach pain, gastritis, etc. It only "flares" up when I eat certain foods or when I'm under a LOT of stress. That's when gastritis kicks in. Once I get the culprit food out of my diet and relax, it will go back down. I can feel pressure in my upper abdomen when I bend over when it is flared up, which is typical when you have a hernia. You may try bending over with a full stomach, if you have pain and pressure, then it's likely a Hiatal hernia. Mine does not buldge outwardly, however, and agree with another post that said your might be a different type. For those who do not want to take antiacids, I use licorise root, and it really helps--more than any prescription med. I get it from Mother's Market in the digestive aid section, it's chewable and does not contain whatever ingredient it is that may cause high blood pressure.
  35. 1 point
    I sympathize with what you are going through. I had symptoms for 8 years before being diagnosed with celiac -- in that time I was told to see psychiatrists and psychologists because no tests revealed anything "wrong" (so it must have been all in my head). The most important thing is to remember that you have to advocate for yourself. Demand that certain tests be done and demand that the doctors get to the bottom of what is going on. I feel for you. Also, just so you know, my celiac was not diagnosed through a blood test or a colonoscopy but an endoscopy (they put you to sleep and stick a small camera down into your intestines -- it sounds nasty but it's really not that bad).
  36. 1 point
    Somehow the human race managed to do just fine without wheat until a few thousand years ago.
  37. 1 point
    Let's have a judgement free area for this discussion.