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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About SusanB26

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  1. Well I'm Officially A Mess

    Just imagine it not only with a gluten-free crust but onion and garlic free sauce too.  Bleh.  Might as well go for vegetarian cheese and just call it something else altogether! Ha!
  2. Well I'm Officially A Mess

      Oh it's SO much more difficult than being gluten-free!  There is onion, garlic, shallots, chives, etc in everything.  I can find many great gluten-free items, but then I read the label and it contains my allergens so I'm stuck.  The biggest thing that I am sad about is simply pizza.  I've found excellent replacements for everything but pizza.  I make my own (with homemade sauce) and it's ok but it's not real pizza.  We live only 20 miles outside of NYC so pizza is a big deal around here.    I try to lay off dairy too which has also been pretty easy, many good products out there.  But what if I was actually allergic to dairy and the other main allergens like corn, nuts, soy etc.  It could be much much worse really.
  3. Well I'm Officially A Mess

    I understand it can take time to get an appointment in Canada, but why not see a gastro or an allergist and be tested?  Until you do, you are your very own science project and there are too many variables to make an accurate diagnosis on your own.  Like I said from my example-  Certain things felt better once I went gluten-free, but I was not really better until I removed every trace amount of the allergen that I never knew I was allergic to, and was not allergic to as a young adult.  I spent days just wanting to lay down.
  4. Terrified

    What I've learned to do is write with a sharpie on a piece of tape on the lid of any condiment I use, "GLUTEN FREE NO DOUBLE DIP".  My kids are old enough to know that means if you need more, you just take a clean knife/spoon.  My sink is full of dirty utelsils now, but I don't care because I know they are following the rule and caring about me.    I use plastic utensils and not wood.  I have a granite counter, no cutting board. I run everything through the dish washer.  I use sponges very little, dispossable wipes have become my best friend and I use them constantly.  I got a new 4-slice toaster and the left side by the wall (the more inconvenient side!) is the gluten-free side.   I have a shelf in the pantry for gluten free items, not really because I'm worried about contamination, just because it's easier to find things.  Start to find snacks that the kids like that you can have as well (corn chips, gluten-free cookies, salad dressings, etc) and it will be very easy.  If I want to keep something as mine and mine alone because it's expensive, I write MOM on it with my sharpie and they all know.  gluten-free pancakes are actually very good, as is corn bread, so we just have that now and nobody complains.  I strain my pasta before the others so I don't have to think about contamination.   My son has had an allergy to red dye #40 and yellow dye #4 and #5 for 10 years now, so I'm used to reading labels.  This became just another label reading task is all.  I make sure those dyes aren't in any healthcare products too anyway, so know I look for gluten in them as well.    It's not hard at all once you get used to it, I promise!!
  5. Well I'm Officially A Mess

      I have read this entire thread and I have to agree that this sounds like an allergic reaction to something.  I felt horrible even being gluten free, until I completely removed, even trace amounts, the allergens that I tested positive for.  I didn't play any guessing games as I felt sicker and sicker as time went on.  I made an appointment with an allergist and was tested.  In my case it's a rare allergy of onion/garlic (shallots, chives, etc) but once I found out what was wrong, I took it one day at a time and within a week or 2 felt much better.  I keep benadryl with me at all times as this helps slightly, and I do know within minutes if I've eaten something I shouldn't have.  For example, I cannot eat a salad that had raw onion on it that someone simply removed, or a bit of ketchup on a fry since it has onion powder in it.  I was sick every single day from these little things that I never knew I was ingesting.  I had shortness of breath, diahrrhea, stomach pain, heartburn,  migraines and more.  Gluten free helped remove a lot of it, but a reaction will come on in about 3 minutes and last for 24 hours if I eat something I'm allergic to.
  6. Family History

    Having been recently diagnosed with Celiac along with an allium (onion, garlic, chives, shallots, leek, scallions) allergy I am learning every day.  Luckily I am a good cook and have learned how to substitute many things and our food still tastes good!    I have a strong family hsitory of Autoimmune diseases.  My uncle had type 1 Diabetes and my aunt has RA. I myself have hashimotos and now Celiac too.   My father used to keep a journal.  We never knew the extent that he did this, he would write little notations from the day in a small calendar book.  After he passed away from cancer we took a look at those books and his notations.  The poor man was sick with stomach issues for years and years.  And what did he eat to try and feel better?  Bread and crackers.  He loved his cereal and a good beer.  He was plagued with skin issues like adult acne, rosacea, eczema and mystery rashes, and always had some sort of Rx cream.    I feel guilty that I never put it all together for him, as I was the one who managed his care (I have a background in healthcare) behind the scenes, and we found many doctors' knowledge unimpressive unless something was right out of the textbook. My heart aches for him knowing that he probably had Celiac all those years.   *SIGH*
  7. Thank you to everyone who responded.  I chose not to have the endoscopy/biopsy.  I feel somuch better being gluten free I can't begin to imagine my life back on it.  I had heartburn/reflux that I thought I might want to get the endoscopy for, but now that too is simply gone.  I am living life as a Celiac and now use the term freely and comfortably.  The more research I did the more I realized you don't need a biopsy to confirm it.  Between family history, my own autoimmune issues, the gene test, and the presence of the anitbodies, I think I have my answer.
  8. I'm sorry you are having to go through this.  I had a similar experience.  Allergist says "try gluten free".  After being gluten free and slowly becoming asymptomatic my blood work showed the prescence of antibodies, but very low.  I then did a gene test which came back positive for the celiac gene (and an intolerance gene as well on the other side). There is autoimmune issues in my family, myself icluded.  If I get achy, tired and just plain old sick like I am getting a flu, I can trace it back to some gluten that I didn't know I ate (mentos for example).  I have decided that rather than eat gluten for 2 weeks and feel horrible, while trying to take care of my family and work, I am simply living life as a celiac and accepting that I most likely have celiac disease.  I haven't looked back and don't plan to.  The best thing I ever did was go gluten free.  I just can't deal with feeling horrible along with the skin issues that come with it.    I hope you figure out what you are going to do.  I really feel for you.
  9. I believe!!  LOL  That's why I came here to post this question.  I want real life expertise and opinions, not a Drs.  I was put through the ringer by Drs over the years with my thyroid.  That's a long story too, but I've come to be my own advocate, making educated decisions not just listening to docs.   So what would you do?  Live life as a Celiac, say you have Celiac (since the odds are against me anyway, that's most likely what it is just need one more test to totally confrim) and just go on with life?  Or would you eat gluten, feel absolutely horrible and then get an endoscopy?   Do any of you feel the need to have the diagnosis "validated"?  Is there any true benefit to it?   I am strict gluten free and feel perfectly fine again for the most part.  When I feel bad I'll get achy/tired and/or gasto issues and I'm usually able to trace it back to something that may have been cross-contaminated or had onion/garlic in it (which is harder than the gluten to be honest... any food that just says "spice" I can't eat without emailing the company).  A few days will go by and I feel better again.   Thank you!
  10. Me too!! I have a similar reaction to alcohol and I don't know why.  I can't have more than three drinks (I'm talking over a long period of an entire night, not in an hour  LOL) or one strongly mixed drink or I get a stomach ache.  Always gluten free alcohol. I never put it together that it could be from celiac, I just figured I have some weird alcohol intolerance. 
  11. I have read it takes a long time for damage to heal after years of symptoms, and that 3 months is still enough time to be gluten free and get an endoscopy diagnosis?
  12. Hi to everyone.   Long story short...  I already have autoimmune thyroid issues (Hashimotos) and unbeknownst to me have had symptoms of having Celiac/Gluten issues for a long time.  Autoimmune issues strongly run in my family; my father and his sibling all have (had) autoimmune disease, Type 1 diabetes, RA, and now we realize my dad most likely had Celiac but passed away from cancer before he could be properly diagnosed-but had lifelong stomach and skin issues.   I went to an allergist for allergy testing because I had been feeling so horrible.  Achy, exhausted, gastro issues, acne, eczema, migraines, etc.  Found out I was allergic to onion and garlic (alliums) which has proven difficult but do-able with a lot of work and effort.  He also suggested I go dairy and gluten free and do an oral challenge so I did.  Diary I'm finding I'm ok with in small quantities and never fat-free dairy. Gluten on the other hand?  Once I stopped gluten EVERYTHING went away.  I am never achy or exhausted, my eczema is GONE for the first time in 25 years.  And the weirdest thing?  I had dark patches of skin on my knees, 2 on each knee in a pattern... 4 different Drs over 10 years and nobody had a diagnosis other than "it's just dark patches of skin". No cream, skin bleach, lemon treatment, alpha-hydroxy could get rid of it.  All but the darkest one that first appeared at the age of 12 is GONE, and even the dark one is about 75% lighter.  It's like a miracle to me!   Anyway, the allergist tested my antibodies for Celiac AFTER he told me to go gluten free.  I would NOT go back to gluten if you paid me.  The test came back as a weak positive and he said to see a gastro for an endoscopy.  I then went ahead and ordered a gene test and found that I carry the celiac gene on side (probably my dads no doubt) and a gene that tends to cause gluten intolerance on the other side.   I am gluten free now for 3 months and so much better.  I know I had some antibodies even after being gluten free (but not enough to be called positive).  I already have an auto immune disease.  Should I go through with the endoscopy?  I feel odd saying "I have Celiac" when I haven't had a medical diagnosis, but do I really need one?  I know "they" say the only real way for an official diagnosis is through an endoscopy, but...   What are your opinions on this?  I appreciate everyone's time and knowledge and hope to become part of this community.