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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 Celiac.com's FREE weekly eNewsletter   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

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  1. You've just realized you have a health condition which can't be diagnosed formally. You haven't felt ok for quite some time, but didn't really know why. You were thinking it was just stress. But then there was a couple of weeks which weren't particularly stressful, so you were wondering 'why am I feeling worse'? You felt like there was an underlying cause you were unaware of. You knew you were meant to figure it out and finally did. Advice: Doctors don't know much about this condition, so don't rely on them. Do your own research. Since you don't have an official diagnosis, don't be surprised if people don't understand. They may even think it's just a product of your imagination... Well, it's not your duty to explain the details to everyone. And it's not your obligation to describe all the positive effects the gluten free diet brings about to those who are (and always will be) sceptical. This is not an argumentation/persuasion skills training. You're not a lawyer or a salesperson. The situation may be different in 5/10/15 yrs... Who knows? There is research ongoing. Maybe people will be more aware, maybe gluten free restaurants will be as common as other types of rest., maybe potential negative effects of gluten won't be a kind of a secret anymore. Don't feel guilty about not being able to realize this sooner. There are 'stakeholders' whose interest is definitely not raising the awareness about this issue. And this has an impact on our society. Their main interest is making profit. Gluten products are profitable, to say the least. On the contrary, the gluten-free diet - the cure - is not currently viewed as a product that much. However, from a marketing perspective, it could be seen as a product. There is potential. There are unrealized business opportunities. There is a gap in the market. Who knows what the future holds? Carry on with your life and try to make the best out of this situation.
  2. Ok, you're fed up with doctors - but you'll have to communicate with them to some extent if you want a formal celiac diagnosis.. Ennis has given you good advice: As for the immunosuppressants - yes, they will probably affect the celiac test results. I'm not a doctor though. You should really ask a specialist. 'Because of the possibility of false-negative results, these tests need to be performed before the initiation of dietary gluten restriction. Many patients initiate a gluten-free diet on their own before a conclusive diagnosis of celiac disease is reached. In severe celiac disease, the effect on serologies and biopsy findings is likely minimal if testing is performed within two months of initiating a gluten-free diet.15 However, the effect depends on the duration of the diet and how strictly the patient follows it. Persons with positive serology results who have a diagnosis of celiac disease on intestinal biopsy typically have normal results six to 12 months after the introduction of a gluten-free diet. Testing results can also be masked when individuals are taking immunosuppressants.6' http://www.aafp.org/afp/2014/0115/p99.html#afp20140115p99-b6 Could also be peripheral neuropathy - a condition often associated with celiac/ncgs. Or a vitamin/mineral deficiency. https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/dxc-20204947 Every nerve in your peripheral system has a specific function, so symptoms depend on the type of nerves affected. Nerves are classified into: Sensory nerves that receive sensation, such as temperature, pain, vibration or touch, from the skin Motor nerves that control muscle movement Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder Signs and symptoms of peripheral neuropathy might include: Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms Sharp, jabbing, throbbing, freezing or burning pain Extreme sensitivity to touch Lack of coordination and falling Muscle weakness or paralysis if motor nerves are affected Not a single disease, peripheral neuropathy is nerve damage caused by a number of conditions. Causes of neuropathies include: Vitamin deficiencies. B vitamins — including B-1, B-6 and B-12 — vitamin E and niacin are crucial to nerve health.
  3. It's not that confusing. NCGS is a real thing. Please don't believe in the myth that NCGS may not even exist. It's a genuine condition which can have a profound impact on almost all aspects of a person's life (especially if the condition is unrecognized!): both physical and mental health, all kinds of relationships (with family members, friends, partners, colleagues), career, job performance, your energy levels - how much you're able to accomplish in a day, ability to be financially independent, education level, study results, continuous learning etc. Call a GI doctor and ask them. You don't have to go there in person to ask about this. After you do this, you can also call another one just to make sure the info the first one gave is correct. My suggestion is that you get 2-3 independent opinions.
  4. I agree with Judy3 - malnutrition, vitamin / mineral deficiency. You can read the following article: 'Nutrition and nail disease': http://www.sbne.org.br/pdf/AC-Nutrition-and-nail-disease.pdf Beau's lines are discussed on page 423: - protein deficiency - pellagra = B3 deficiency - dysregulated blood mineral levels - such as low calcium - arsenic toxicity Abstract: The nail is a specialized keratinous skin appendage that grows approximately 2 to 3 mm per month, with complete replacement achieved in 6 to 9 months. Although this structure can be easily overlooked, nail disorders comprise approximately 10% of all dermatologic conditions. This contribution first provides an overview on the basic anatomy of the nail that will delineate between the nail unit (eg, hyponychium, nail bed, proximal nail fold, and matrix) and anatomic components not part of the nail unit (eg, lateral nail folds, nail plate, and eponychium). The function of each nail structure will also be presented. The chemical profile of the normal nail plate is reviewed with a discussion of its keratin content (hair type keratin vs epithelial type keratin), sulfur content, and mineral composition, including magnesium, calcium, iron, zinc, sodium, and copper. The remainder will focus on nail manifestations seen in states of malnutrition. Virtually every nutritional deficiency can affect the growth of the nail in some manner. Finally, the discussion will include anecdotal use of nutritional and dietary supplements in the setting of brittle nail syndrome as well as a brief overview of biotin and its promising utility in the treatment of nail disorders.
  5. There are two misconceptions I'd like to correct - can't decide which one I'd choose: 1. Celiac disease is temporary - once you heal, you can eat gluten again. 2. I'm a diagnosed celiac but don't have any symptoms - this means I'm fine / healthy - the tests were wrong (false positive) and I'll keep on eating gluten.
  6. Hi, just a short reply: - Gliadin IgA, Gliadin IgG, TTG IgA, TTG IgG, Endomysium IgA, Endomysium IgG + Total IgA (= serum level of total immunoglobulin A) - 10 percent of celiacs are seronegative, i.e. negative blood test + positive intestinal biopsy - some people are non-celiac gluten sensitive (NCGS) - no tests available - DH is diagnosed via a skin biopsy - a dermatologist can diagnose it; only celiacs have DH Hope this is a bit helpful You can also search this website for more info or read other (older) discussions.
  7. Yes, I wouldn't recommend them for brain fog either - I should have said it, sorry. It really depends on what kind of issues Mat82 has. Also, we don't know if he has any positive/negative experience with benzodiazepines. So, it was only a suggestion. They can help with anxiety, panic attacks, trembling, cold sweats, jitters etc. They can help with things like exam stress or job interview anxiety. However, everyone is different, can have a different reaction.. and there are various types of benz. and doses available. So, I gave advice based on what helped me in the past - e.g. during exam periods at uni. I was taking a min. dose 1-2 hours before an exam and it was extremely helpful. I was calm, wasn't trembling, was focused and could think clearly. And, I wasn't sleepy - just calm. But not everyone may react in the same way, of course.
  8. If I were in your situation, I’d eat only the minimum amount of gluten. According to this source, it is ½ slice of bread each day for 12 weeks. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I think the more gluten you consume, the worse you feel. So, it wouldn’t be a good idea to eat more than necessary.. If you are already consuming only the min. amount but don’t feel well, then you can miss a couple of days (1-3), in my opinion. I think a gluten challenge as such – i.e. its length, the daily recommended amount of gluten etc. - is just an estimate. So, I personally would risk not eating gluten on Monday and Tuesday. Then, I’d eat it again on Wednesday after the interview. I’d probably double the amount of bread on Thu, Fri to ‘make up for’ Mon, Tue. Of course, it would be better not to to skip any days, but I do understand that the interview is important to you and you want to feel ok and make a good impression. Maybe you can take a benzodiazepine approx. 2 hours before the int.? (If you’re taking any other drugs please be wary of possible interactions. Also, benz. are addictive and not allowed for long-term use.) They can be helpful when used occasionally though. I hope all goes well with your interview
  9. Posterboy, thank you very much for your reply - it’s very helpful to me. I’ll read the studies and blog posts you have recommended.
  10. I’ve kind of reprioritized things in my life recently. If I were to choose among different career paths now, I’d choose the one which is not very stressful. So if my options were: 1) less stress/lower salary and 2) more stress/higher salary, I’d choose the first one. The main reason is I’m convinced that extreme stress was actually a trigger of my ncgs. There is an interesting discussion about inflammation, stress and celiac/ncgs in another thread on this website. I believe that stress leads to inflammation and inflammation leads to celiac/ncgs. So I just want to say that I’d make my decision based on these criteria – not too much pressure or long hours. I probaly wouldn’t recommend setting up your own business now. I know a couple of business owners and the beginning was very tough for all of them. Working as an employee, e.g. for a small business, would be better, in my opinion. You’re very early in the process of getting used to the new lifestyle so I think you’ll see things more clearly and in a more positive way in the near future
  11. Thank you, ravenwoodglass. I feel more calm after reading your reply My own experience with supplements is very limited, so seeing the high doses on the B-complex label freaked me out a bit. I will definitely purchase the sublingual B12 next week. Another B vitamin that is not included in the B-complex is B9 (folate) so I guess I’ll get that as well. I’m taking a magn. lactate now, it’s 500mg magnesii lactas dihydricus per one tablet. The recommended daily dose is 2-3 per day. The producer doesn’t say how much elemental magn. there is. I’ve googled it and 12% seems to be the usual amount for magn. lactate – so it would be 60mg/tablet. Next time I’d like to buy magn.+zinc+calcium supplement instead of magn. alone. Well, she wouldn’t listen to me unfortunately she’s the type of a doctor who prefers to give people a million drug prescriptions a year rather than discuss and test for deficiencies. Even if a person is underweight - she doesn't care. That’s why I have to research it myself. I do have an option to get the tests in a private lab though.
  12. Posterboy, I’m currently interested in vitamin and mineral deficiencies and their impact on proper nerve function. So, if you don’t mind me asking: which vitamins or minerals helped you with the nerve inflammation? You mentioned B12 and magnesium – is there anything else you found useful? Also, it would be great if you could say how exactly you were taking these vitamins or minerals, i.e. the dose, the time of the day, for how many weeks/months.. The reason I’m asking is that I don’t know much about supplements and how to use them properly - so that I don’t overdose or combine them in the wrong way, for instance. (I haven't had any blood tests to check for deficiencies.) E.g. I’m taking a very strong B-complex* now, there are 100 tablets, and I don’t know for how long I can use it safely.. 100 days in a row wouldn't be a good idea, right? Thank you. *B3 50mg, B5 25mg, B1 15mg, B2 15mg, B6 10mg, B7 500 micrograms. Exactly, I agree.
  13. Kefir – suspicious ingredients

    Thank you, Awol cast iron stomach. It's really hard to tell which ingredient(s) is the wrong one for me. I think I'll eliminate all additives as much as possible because they are unhealthy anyway and then if that doesn't work I'll eliminate corn and dairy, too.
  14. Kefir – suspicious ingredients

    Thank you everyone for your replies. ravenwoodglass: Your advice was helpful I’ll try to avoid items like this which have so many unnecessary and artificial ingredients – they make me feel out of control. A food and symptom diary is a great idea - especially when trying out new brands of foods. artistsl: Thanks for the tip – I don’t live in the US/UK unfortunately so I won’t be able to purchase this specific brand of kefir. However, I agree that it’s a good idea to try and find another brand which isn’t full of additives. It won’t be a problem.. I’m NCGS as well and I’m very familiar with brain fog and dizziness.. very unpleasant. As for the locust bean gum, I’ll definitely try to avoid it. I don’t think I have an issue with dairy but know that many celiacs/ncgs people do so it’s a good suggestion. cyclinglady: No, I don’t have an intolerance to corn in general.. but maybe I do have some kind of intolerance to the glucose fructose syrup.. it’s a very artificial and processed ingredient and this is not the first time I’ve found myself reacting in a bad way to an item that includes it. Jmg: Yes, the unflavoured ones would be safer, I think. I’m almost sure my reaction wasn’t to dairy as such but to one (or more) of the additives. The reason is that I’ve been eating lots of dairy products since I went off gluten and have been ok. The pattern is this (I guess): if it’s a normal dairy product such as a yogurt made of milk/cream + yogurt cultures (+ fruit + sugar), it’s ok. And unflavoured milk and all kinds of ‘real’ cheese are fine, too: mozzarella, cheddar, cottage cheese etc. Once a yogurt/kefir or another milk product includes additives or unnatural ingredients, there seems to be a problem. You’re right - there are other possible sources of cc.. I try to think about them one by one because it really gets very confusing when there are many possible sources of a glutening/cc.. it’s almost like an investigation. It’s a very good point though, thanks Feeneyja: Thanks for the suggestion. As I said, for now I’ll probably assume I’m not dairy intolerant but will definitely be wary of it and bear it in mind because many of you guys have pointed it out.
  15. Hi guys, I had a really bad reaction to a certain brand of kefir yesterday. The reaction was neurological and I think it must have been an accidental glutening or an allergic reaction to an additive. The problem is I don’t know which ingredient had caused it. I was wondering if anyone has experienced a negative reaction to any of the following ingredients: Locust bean gum E410 Apricot puree (further unspecified) Glucose fructose syrup Citric acid E330 Sodium citrate E331 Paprika extract E160c I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk, sugar. Thanks