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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?  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

Mrs. M.

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  1. Thank you all very much for your responses to my questions. It is helpful to know that I am not way off track here. I will hope for a useful conversation tomorrow with the GI doc.
  2. In February of this year I was "diagnosed" with Celiac disease based on a positive ttG IgG. My doctor said this result was enough to make her convinced I had celiac disease and she said I should start on a gluten-free diet, which I did. I have been following a gluten-free diet for the past 8 months, and have not intentionally eaten any gluten, although I suspect that some has snuck in here and there when I am not aware. My symptoms were never extreme. The reason I was initially tested was that I was having inflammation of muscles in my leg, and my chiropractor recommended that I be tested. I do have stomach issues (have lived with these for years) and migraines, and various other stuff that can all be part of celiac. But nothing delibilitating. Of course, now that I am aware of celiac disease, I have been reading gluten-free cookbooks and other sources and feel like living a gluten-free life is the right path for me. I also know that many people with celiac disease don't tolerate dairy or other types of foods. Recently I asked my doctor for a referral to a nutritionist to see whether I could improve my diet further and find out whether other foods were causing me to have stomach cramping, bloating, etc. She surprised me by saying "you should have an endoscopy to find out whether you have celiac disease". This is a huge surprise to me, since I've been going under the assumption that I DO have celiac, since this is what she told me 8 months ago. I have requested a consultation with a GI doc to review my history before I undergo an invasive and possibly unnecessary procedure. I would love to have feedback from this group on any questions I should be asking. I have some already: -In order for the endoscopy to be meaningful, wouldn't I have to start eating gluten again? for how long? -Is it normal for someone with celiac to still experience some GI discomfort like bloating, cramping, even when on a gluten-free diet? (I have no idea what a "normal" stomach feels like) -How do people figure out whether they have intolerance to dairy/corn/other foods besides gluten? -Should I have more blood screening? What about genetic testing? (I am also concerned about my kids, who are 5 and 8 years old, especially the 8-year old, who had chronic stomach aches and a rash on her elbows and knees until she stopped eating gluten.) Basically, I feel like I have so much evidence that I have celiac disease, but I don't know whether I am just looking for pieces to fall into place. Any advice/comments welcome!!!
  3. Thank you. Kimball is the lab I spoke with. I like them because they have certified genetic counselors and I know I can trust their results and quality of service. I just don't think my husband will fork out that kind of money for a test he doesn't understand (and a disease he doesn't understand). I will check out the My Celiac ID as well. You might want to call Kimball for the latest. Their toll-free number is 800-320-1807. You can do My Celiac ID for $329, it is a saliva test. They do not mail your results to you, you get them at an online link. They do not bill insurance or help you bill your insurance.
  4. I am looking for recommendations for laboratories that do diagnostic genetic testing for celiac disease. My doctor says I have celiac disease based on a (slightly) high TTG-IgG. I have been gluten-free for a couple months and feeling a little better but never had severe symptoms. I am interested in genetic testing for two reasons: (1) to lend support to or to rule out my diagnosis of celiac disease, and (2) I want genetic testing for my kids, assuming I have the Celiac-predisposing genes. My health care providers do not seem to be very well-informed about Celiac disease. At least they have a very different approach than what I read about in this forum and in all the many celiac books I've been reading. No one seems inclined to do more testing on me, especially not genetic testing since it is expensive. I would be interested in paying for it if I can find a lab that offers it for a reasonable price. The one quote I have so far is $400 per person which is too much since I have several kids who would need to be tested. The other caveat is I want the option of cheek swab/saliva testing since my kids will not want blood draws. So, if anyone has experience with genetic testing, and lab recommendations, please send them my way--thanks!! by the way, I understand that the genetic testing doesn't tell everything. But I think it would be helpful information for me.
  5. they were corn tortillas (I know enough to request them instead of flour)... but afterward I realized the tortilla chips could have been contaminated if the restaurant also makes tostada shells.
  6. Hi- I am relatively new to the world of celiac disease (diagnosed 2 months ago and following gluten-free diet since then). Yesterday I had significant stomach cramping starting in the early afternoon and I am trying to figure out what I ate that caused the problem. I think all of my food yesterday was safe, so I am wondering whether this could have been a reaction to something I ate the night before (restaurant food that I'm not sure about). How long after eating a gluten-containing food does it take before you feel symptoms? Can it be immediate? Or can it take as long as 12 hours? Thanks for feedback! And, the food I'm questioning is El Torito veggie fajitas. Does anyone happen to know whether these contain gluten? thanks!!
  7. I have been following a gluten-free diet for about 6 weeks, after learning that I have (mild) celiac disease. Right away after starting the diet, I felt much better (no bloating/discomfort after eating). But lately I feel like I have more bloating again--hard to tell whether it is as much as before, and it comes and goes. I never had severe digestive symptoms, so it is hard to quantify. My question is whether I should try eliminating other foods from my diet. I have been told that many people with celiac disease have trouble digesting other foods like dairy products. I don't drink milk any more, but I do cook with butter and dairy products. I don't want to give up all these foods if I don't need to. I would like to hear other people's experiences and advice: is testing typically done for other food allergies, or do people just figure out what works and doesn't work by trying to eliminate foods from their diets?
  8. I started on a gluten-free diet last month, after being diagnosed with celiac disease. I have had Raynaud's syndrome for years. I know the two can be connected, but I am surprised (not happily) that my Raynaud's symptoms seem much worse ever since I started the gluten-free diet. I know it is winter but our weather is very mild. I am now getting white fingertips many times a day, usually when I am preparing food or after I have eaten. Maybe it is just that I am cooking a lot more food from scratch, washing fruit and veggies, etc. But I'm curious about whether there could be any medical explanation for this. thanks!
  9. I just noticed on the labels of all my gluten-free flours and xantham gum that they should be stored in the refrigerator or freezer. Is this necessary if I use up the flour relatively quickly? The bags of flour are all so small that it seems like it will be easy to go through them pretty fast. We have a cool pantry and our house stays pretty cool all year. Our refrigerator and freezer are already full without any flour inside. thanks!
  10. Thank you for the advice. This fits with what I am thinking.
  11. I was diagnosed with celiac disease a few weeks ago. I have mild symptoms consistent with celiac, and positive lab results. I am concerned about the risk to my kids, which I understand is empirically 10%. My oldest daughter, who is 8, just got tested. Her lab results (TTG IgA and IgG) were normal. This is the only testing recommended by her pediatrician. I am pushing for more, but want to get advice from this group so I can be better informed when talking to her doctor. I am concerned about her because she has frequent stomach pain, and an itchy rash on her knees and elbows. I know these things can be unrelated but in the context of my diagnosis they make me concerned. Has anyone had a similar situation of being diagnosed and trying to figure out whether your kids have it? I don't know whether to just be happy that for now they seem ok, or trying to push for more evaluation. Should I have her levels checked again in a few years? Have a dermatologist test her rash to see whether it is DH? Do genetic testing? Do nothing? If anyone has advice for me, please share. Thank you!
  12. Hi- I am new to the gluten free diet. I am eating a lot of rice (and enjoying it) and my friends are suggesting that I get a rice cooker to make it easier to prepare. Meanwhile, my husband wants to get a pressure cooker (unrelated to my gluten issue). I would like to have as few appliances as possible. Can I use the pressure cooker for rice, or would I be better off having both appliances? I know everyone is different, but I'm looking for input for people who are experienced in gluten-free cooking. We like to cook but don't want to go overboard buying a bunch of expensive new equipment that we don't need. thanks!
  13. I was diagnosed with celiac disease a couple weeks ago. I have been reading about this condition and trying to figure out whether my 8-year old daughter might have it too. She has frequent stomach aches and also has a very itchy rash on her elbows and knees. She has complained of itchy knees for the past year. The rash is red and bumpy. I have always thought it was excema. Could it be DH? How can you tell? Is there a specific distinguishing appearance to DH? Thanks for any advice.
  14. I am new to this forum and am looking for help with my recent lab results. My doctor tells me I have celiac disease based on two blood results (that's all that was done): TTG IgA: normal TTG IgG 1.41 (standard <0.9) One of my questions (apart from the bigger question of whether I really have celiac disease (see my first post) is whether this IgG result is relatively low for a person with Celiac disease, and whether that might mean that if I have Celiac disease, it is not too advanced. Do the levels sometimes get really high, and does that mean that the disease progression is more severe? My doctor isn't recommending any more testing at this point. Should I be asking for a biopsy? I have started a gluten-free diet and feel better already, only a few days into it. But maybe that's all in my head. Can you feel effects this quickly? thanks for any advice as I wait THREE MORE DAYS for a doctor's appt. Sigh.
  15. Hi- I am brand new to this group. I recently had a blood test for gluten intolerance and the results came back as follows: tissue transglutinaminase IgA 0.41 (standard <0.90) tissue transglutinaminase IgG 1.41 (standard <0.90) I asked my doctor what this meant and the reply was: you have celiac disease. You should start a gluten-free diet now. the end In general I like my doctor but I was shocked by this response. Everything I have read about celiac disease says that the intestinal biopsy is the gold standard for diagnosis. Also, everything I read says that the IgG is used when the patient has overall IgA deficiency. I don't think I have this. I don't have severe symptoms. I was tested because of back pain. When I read about celiac disease, I can see a lot of symptoms that I have in a mild form. I would love any opinions that people have for me as I wait to hear back from my doctor. Thank you!