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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 Eddiethecat

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  • Birthday 03/28/1964

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  1. Lillian30, I'm new here also and totally empathize with you.  Based on everything I've experienced and read I believe I have celiac, (I did a gene test and do have the gene). Short story, after trying to figure out my symptoms and what was wrong with me I came across a list of symptoms for gluten intolerance and decided to try gluten-free to see if it made a difference.  It made a huge difference but at the time I didn't consider the possibility of celiac.  It was things that happened after going gluten-free (accidental glutening and reactions) that made me begin to suspect celiac.  So I had the gene test to rule in or out the possibility.  Since I have the gene now I want to know for sure but am at the same place where I have been gluten-free for a yr and my experiences when accidentally ingesting gluten have been bad enough that I don't want to do the challenge and be sick to take a test that may or may not even be accurate.   I did go see a Gastro doc, one that had good overall reviews.  I had a list of all my symptoms (that lessened or resolved after going gluten-free), a writeup (so I wouldn't forget anything ) about what I experienced and my gene test results.  At first I thought he gets it but after some more discussion, he dismissed the gene test (had it done through Entrolabs) suggested it might be SIBO and asked if I had any children.  I have one and he asked if there were any issues getting pregnant, I said no and he said that having issues was a sign of celiac (sounding like if I didn't have issues I couldn't have celiac) . Then had me schedule for colonoscopy and endoscopy.  I left feeling very frustrated. I had really wanted to sit and talk about all this with a doctor and the whole visit was maybe 15 min at the most.  I went home and looked up SIBO, and while it could be a possibility, there are 2 tests that could rule it out that are non invasive - yet he didn't bother to order them.  Also, I don't believe I had celiac at the time I had my daughter - (She is 14) I believe the onset started during the past 4-5 yrs (had a surgery and stress that may have triggered it).    I found another Doctor that specializes in food allergies, eosinophilic esophagitis and celiac disease. I have an appt tomorrow so we will see what he has to say.  Over Thanksgiving I had a discussion with my family and they asked me why a diagnosis matters to me, if gluten-free makes me feel better and the symptoms go away then I should just say this is what I do to be healthy and leave it at that.  I guess I just feel like I need that confirmation that it's not in my head.  ( I know it's not but I can't shake that thought).
  2.  I really liked the gluten free pantry mix, but saw that it is now by Glutino, I tried a box and it did rise nicely but had a funny aftertaste/texture to me.... I have some Gluten Free For Me mix I haven't tried yet, waiting for my intestines to calm down from the pamelas.
  3. It's frustrating that with all the new products, made by the big brands, they still feel the need to charge almost double for packages that are smaller than the gluten filled counterparts!   When I first went gluten-free, I bought a lot of the gluten-free snacks and things, I think it was to feel 'normal' like I wasn't missing out.... I would make brownies or chocolate chip cookies with the betty crocker mixes all the time - ironically before I was gluten-free I didn't make the gluten filled versions that often!  I've definitely cut that back and now after a bad experience with Pamela's bread mix thanks to the inulin in it ( was so excited to make bread too). I've decided to make my own meals for lunches at work and generally avoid the processed stuff. Does anyone have a really good bread recipe for the breadmaker? Or a mix they recommend?  At least it will be a larger loaf than the tiny frozen ones for $5
  4. I just discovered this mix, and was so excited to have a tasty bread I could make.... make 2 loaves and didn't seem to notice anything, then by the 3rd loaf.... yikes.  A few hours after hacing a slice I had terrible gas and bloating, and ended up with diarrhea.  At the time I thought it was the frozen meal I had for lunch.  So the next day I had a slice for breakfast and a slice at lunch with my soup..... I was in a lot of pain and got a pain on my left side.  I have not had any since last Thursday and I am still having issues. I was alsmost going to make another load and then I saw some reviews on Amazon about the gas and bloating and saw this post here as well. Everytime I eat anything I get pains in my intestines.  How long does a reaction to inulin last?  I've made sure not to eat anything else with inulin (chickory root ) in it. It's been almost 5 days now.
  5.     Thanks! I agree, I wish there was another way to test.
  6. Hi, I'm new to the forum and and so glad to be able to chat with others with the similar experiences!   A little background.  When I was a kid, I was always sick (flu, colds etc) and really skinny until I had my tonsils out in kindergarten.  After that as I like to say, I got real healthy (translation big appetite and weight gain). When I was in grade school I remember complaining my stomach hurt, my mom took me to the dr and was told it was gas. She thought I was trying to get out of school but I just remember my stomach hurt!.  as I got older I remember that after I would eat my intestines would vibrate and gurgle and make embarassing noises.... I would get constipated most of the time.  This went on into adulthood, and I noticed I would feel ocassional nausea and almost daily reflux ( didn't know what it was at the time)  When I was pregnant with my daughter it was the only time I didn't have annoying stomach issues, and it didn't seem to start back up until about 2 years after she was born.(that was in 2000).  For the past decade I started to notice little things, like near constant anxiety, so I would look into things like too much estrogen, candida and so on.  Then starting about 4 years ago  I started to notice joint pain.  It started in my left shoulder - this dull aching that wouldn't go away.  I scheduled a dr appt and of course the day of the appt it magically went away. Then by 2012 the joint pain progressed into my knees and ankles to the point where if I had been sitting at my desk at work for a period of time and had to get up to go to a meeting, I could barely walk.  Sometimes my legs would just ache at night.  I also developed plantar facitis.  At this point the anxiety was non-stop, and I would have days where I felt out of it.  No matter how much sleep I got at night I always felt tired or had low energy.  Sometimes I would be talking to someone and I would draw a total blank on what word I was trying to say.  It was embarrassing!!  I also was experiencing incredibly bad gas and bloating every evening.  I knew something wasn't right I just had no idea how to express it where a Dr woudln't think I was nuts!  I started looking at things like arthritis (I was in my late 40s at this point).  I remembered I had looked at gluten a few years before but didn't really grasp the concept of gluten free (this was pre-fad days) .  I decided to look at it again and was shocked at how many of the symptoms I had that related to gluten intoloerance.  So in Sept of 2013 I decided to try gluten free for a couple of weeks to see if it would make a difference.  I really wasn't expecting any change.  Boy was I wrong!  Within a few days it was like day and night.  The constant anxiety was gone.  My joints stopped hurting, I started to feel like I could think clearer. After a few months I started to notice things I didn't even connect to gluten.  My face cleared up (I always seemed to have pimples pop up)  my plantar facitis went away.  The little bumps on the back of my arms that had always been there (chicken skin) started to go away.  At that point I knew I had a sensitivity and was determined to remain gluten-free for life.    There was a part of me that still thought maybe I was imagining it, and the possiblilty of celiac disease had never entered my mind.  Then one evening I had a couple the "gluten removed" beers (don't want to say the brand) that night I slept fine, yet the next day I was completely exhausted. and I noticed the platar facitis in my right foot started to flare up.  That night at dinner my family said I looked like I had eaten gluten, and I felt like I had, but I was adament that I hadn't.  The next day I couldn't even put pressure on my right foot.  I knew I had been glutened but couldn't figure out where, as I thought I had been very careful. Then I read about that beer, and that many people had also had bad experiences with it.  This confirmed for me that gluten intolerance wasn't all in my head!  I decided to have the stool test done from Eterolabs.  My Fecal Anti-gliadin IgA 73 Units.   I am a part time food photographer and at the end of June I was working on some photos for a client that sells various mixes for southern fried food and desserts.  I have no idea what got into me, but as the chef was preparing the different items I decided to sample things.....The next day, I didn't notice any big reactions so I thought I skirted by with not getting enough ppm of gluten to affect me.  That evening after dinner I became ill.  This went on for most of the evening.  After that stopped, I noticed my tongue was really irritated, like I had burned it on hot liquid.  So I looked it up and discovered I have geographic tongue.  I also saw that it could be a sign of celiac disease.  Up until this point I had never thought of the possiblity of celiac disease.  But now I was starting to put the pieces together.  My father has a lot of digestive issues, including colitis and diverticulitis. Since I've been gluten free I can't really get any celiac tests done so I decided to get the genetic test done, since if there is no gene then I have nothing to worry about other than the inconvience of getting glutened.  But if I have the gene, then I know there is a risk that it has developed or could develop.  I went back to Eterolab and this is the results of my gene test:   Gluten Sensitivity Gene Test HLA-DQB1 Molecular analysis, Allele 1      0302    HLA-DQB1 Molecular analysis, Allele 2      0301    Serologic equivalent: HLA-DQ   3,3  (Subtype 8,7)   Interpretation of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the genes that predisposes to gluten sensitivity and celiac disease, in your case HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity, in your case HLA-DQB1*0301. Having one celiac gene and one gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity or celiac disease may be more severe.   So now I am thinking that I have celiac, based on all the 'circumstantial' evidence I have gathered. My theory is I've had gluten sensitivity and it began to turn into celiac in the last few years. I did go see my primary care dr to discuss this, but I think he is not up on the latest info about celiac - He still thinks its really rare and that he only has 2 patients with it and both have DH. (meaning you HAVE to have DH).  I did schedule a phsyical to at least rule out anything else like thyroid, however having been gluten-free almost a year I blood tests and endoscopies will probably come up negative with regard to celiac. So there I am, without a real diagnosis.  I am living as though I do have it though to be safe.    Sorry this is so long, I just wanted to share and see if there is anyone else in this limbo state of not having a diagnosis and not wanting to consume gluten just to get one.