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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity

    Ox on the Roof

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    1. Ox on the Roof added a post in a topic Argo/kingsford Corn Starch   

      Wow, thanks for that information, Shauna! I always get this picture of someone who really doesn't care, trying to clean flour off of industrial equipment. And we all know how hard it is to get powdery stuff like that off our counters, dishes, etc. I'm always suspicious of factories who run those things on the same lines as their gluten-free products - like DeBoles pasta, for example. (Or at least when I checked about a year ago they did not have dedicated lines; maybe they do now. Don't want to misrepresent!)
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    2. Ox on the Roof added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Argo/kingsford Corn Starch
      Hi, all! I have been doing very well lately and got unexpectedly zapped. I knew it was actual GLUTEN because I had neuro symptoms, not just GI (ex. I had periphrial neuropathy in one foot for half a day and I was very dizzy - sure signs of gluten for me). The ONLY thing I had eaten differently was some gravy I had made with corn starch, and there was no possibility of cc because it was made in my kitchen with my dishes. Because Argo Corn Starch specifically states "cornstarch is a gluten-free product" on their label, I had a hard time figuring out what had made me sick. But I decided to email the company anyhow. Here is their response:

      October 1, 2012


      Thanks for contacting ACH Food, Inc.

      Argo Corn Starch is produced in a facility where dairy, eggs, soy, wheat and coconut are also present. (Wheat is the only gluten product in our facility.) Generally, the corn starch is run on its own equipment; if there is an occasion where a product containing wheat would be run on the same equipment, we perform a thorough clean-out procedure between operations to prevent cross-contamination. While our facility is not certified gluten-free, we do everything possible to ensure there is no cross-contamination in our gluten-free products.

      I hope this information is helpful. Please let us know if you have other questions.

      We appreciate your interest and hope you will continue to enjoy our products.

      Consumer Affairs
      ACH Food, Inc.


      I don't want to cause paranoia, and some people may not be sensitive enough for this to matter. But I thought I'd share since the reply was surprising.

      (On a semi-related side note, how difficult do you think it would be to remove wheat from a line that runs very powdery products like cornstarch?)
      • 5 replies
    3. Ox on the Roof added a post in a topic Is There A Lab That Tests Food?   

      Oh my goodness! That is so awesome. Thanks! I didn't think it would be that easy. I don't want to go after the company or anything. I just thought it might be a way to further confirm in my mind that I have Celiac.
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    4. Ox on the Roof added a topic in Celiac Disease - Coping With   

      Is There A Lab That Tests Food?
      I searched the forum but did not see any previous posts with this particular question.

      My short question:

      Is there a lab that will test FOOD for gluten?

      My long question:

      I am a self-diagnosed Celiac via diet (bloodwork was negative and I did not have a scope run before going gluten-free - LONG story, involving some BAD doctors!). My illness began way back in May of 2009. In ignorance I went "sorta" gluten-free just over a year ago, and then got extremely strict with other foods and stopped eating out completely about two months ago. I've been feeling MUCH better, too. The only grain I've eaten is rice. No dairy, soy, nuts, not even ready-made cereals like Chex. It's mostly just been meat, veggies, fruit, potatoes, and eggs. Whole foods.

      Earlier this week, my husband bought me some Food for Life gluten-free English Muffins. I ate one Monday night and was horribly sick on Tuesday and Wednesday. Just today I am starting to feel better. I Googled and searched this forum for info about Food for Life and was not thrilled with what I found.

      This may be a crazy idea, but I was thinking that if I could have one of the remaining muffins tested, and it contained gluten, I'd have a definite answer.
      • 6 replies
    5. Ox on the Roof added a topic in Celiac Disease - Coping With   

      If You Need A Laugh...
      My mom called and told me to look up John Pinette on YouTube. I am glad I did because today has been rough and I needed a good laugh! This is a short stand-up clip about Celiac (although the comedian was told he has a "wheat allergy") and it is completely clean (my children watched it with me). If I have posted in the wrong place, feel free to move it.

      John Pinette: Still Hungry
      • 8 replies
    6. Ox on the Roof added a post in a topic gluten-free/lf Cookies...but They Made Me Sick?   

      Looking, I felt terrible just listing all those ingredients, because I've been eating mostly whole foods. But I've been eyeballing the Oreos and thought this would be a better idea!
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    7. Ox on the Roof added a topic in Celiac Disease - Coping With   

      gluten-free/lf Cookies...but They Made Me Sick?
      Hey, all!

      I have been very strict with gluten-free and LF lately, and was craving some kind of dessert. So I double-checked the ingredients in Hodgson Mill gluten-free cookie mix and then made a batch. I am 99% sure that these cookies made me sick, as I was monitoring everything else I ate. And I ate one again this afternoon to confirm.

      So here are the ingredients I used. Any ideas on what secondary intolerance I may be looking at?

      Mix Ingredients:

      Brown Rice Flour, Sugar, Tapioca Starch, Amaranth Flour, Cornstarch, Baking Soda, Xanthan Gum, Flake Salt

      I added Best Life Buttery Spread, which boldly claims to be gluten-free and LF:


      I also added Crisco shortening:


      And some pure Nestle cocoa powder and granulated white sugar.

      Thoughts? I am wondering about the soy, although I've never noticed having trouble with it before.

      • 4 replies
    8. Ox on the Roof added a post in a topic Lactose Tolerance Test   

      I love it! Yep, that's about what it's like! Hopefully it will be better tomorrow.
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    9. Ox on the Roof added a topic in Celiac Disease - Related Disorders & Research   

      Lactose Tolerance Test
      I had a lactose tolerance test run today and it was a nightmare! I had to drink Lactulose. As I understand it, Lactulose is a synthetic sugar derived from lactose, used for constipation. When used as a laxative, you normally have a tablespoon, but I had to take 75 mL (a little over FIVE tablespoons). Needless to say, I was running to the bathroom constantly. And I had to be stuck every thirty minutes for four hours, plus the control stick and one blown vein (duh, after ten, who wouldn't blow a vein?), for a total of TEN sticks. Now, hours later, everything I am eating is still rushing through and my stomach sounds like I have some kind of underwater creature in there!

      If you have had this done, is Lactulose what you had to drink? I am paranoid that the lab ordered LacTUlose instead of lactose and that the test won't be valid, after all this! But since it is derived from lactose, maybe it's the right thing.

      Everything I've read online about this tests just says that you have to drink something "containing lactose," so I thought if someone on here has had this run they might know exactly what they drank.

      • 2 replies
    10. Ox on the Roof added a post in a topic I Cannot Believe What I Just Ate   

      Mmmmmm.....raw cocoa beans....

      Thanks for these ideas! I can do without a lot of stuff, but I must have chocolate!
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    11. Ox on the Roof added a post in a topic I Cannot Believe What I Just Ate   

      That sounds HEAVENLY. I am a choco-holic, but I'm lactose intolerant and just got diagnosed with reactive hypoglycemia. Anyone know what kind of chocolate (boar ) that I could get my hands on? I found a bar in the organic section of Kroger - gluten-free, LF, low sugar. But it tastes like...chocolate chalk.
      • 0
    12. Ox on the Roof added a post in a topic Diagnosis...   

      Ravenwood - The first day I came to this forum, I saw your signature immediately noticed the false negatives. That is what made me decide to try gluten-free, even with the negative blood tests. So if it turns out that I am Celiac, and I get all better, you will be the first one that I thank! This made me do a double-take:

      My BS issues are probably not related to gluten, although I'd love to have something to blame it on. (It took me a few minutes to realize that you meant BLOOD SUGAR!)

      Doc - Yep, it is supposed to roll in again today! Then SUNSHINE for a few days, which I am much looking forward to. I am eating breakfast and have vamped up the protein since the RH diagnosis. This morning, for example, I had an egg, bacon, and some gluten-free granola (low-sugar). Of course, I'll probably end up with cholesterol levels out the roof! I do like veggies, so that's no problem. And this week I've been snacking on jerky and almonds throughout the day.

      Again, thanks for the advice and encouragement. This is a great forum.
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    13. Ox on the Roof added a post in a topic Diagnosis...   

      Hello from Memphis, Dr. Keiser. This has been an almost two-year process for me and I went gluten-free because I wasn't sure what else to try. I've been gluten-free for two months until yesterday. The only reason I ate the burrito wrapper (okay, and a bun, I'll admit it!) was because with the lactose intolerance and reactive hypoglycemia, there wasn't much left to eat! I figured that maybe the RH was the only problem, after all, so I'd try some gluten. But it seems there is something overarching here; if not gluten, then SOMETHING.

      Starry, they did an endoscopy when I first got sick, but they only checked for GERD! They took a biopsy of my esophagus only. So I'm always on the fence - were the negative IgGs and IgA's correct? Or false negatives? Am I gluten intolerant but gluten is sneaking in somewhere? Or is it something else? Or a combination?

      It's hard, being a super-sleuth.

      I know for sure that I've been tested for heavy metals and H. Plyori, among a myriad of other things.

      Okay, that burrito and hamburger were good. Climbing back on the wagon. Sigh.
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    14. Ox on the Roof added a post in a topic Diagnosis...   

      Thanks, everyone!

      Starry, to make a VERY long story short, my symptoms were all gastro (belching, nausea, bulky BM) and neuro (shaking, panic-attack-like symptoms early on, numbness in my fingers and feeling like they were twisted, depression). There's a bunch more, but I'll keep it short.

      I tested negative for Celiac antibodies twice, a year apart. But after visiting this site to confirm the test results, I was told to try the diet anyhow. It seemed to help somewhat.

      And now...

      I ate gluten yesterday and I am belching my head off today!!!

      I think with vitamin D and B12 deficiency, lactose intolerance (getting tested for that to confirm this week, but I already know the answer), and reactive hypoglycemia...and now being sick after eating a burrito yesterday...I am going to stay gluten-free a little longer and talk this over some more with my doctor.

      But at least finding out all the little stuff should make me feel a bit better. (Trying to keep my chin up here.)
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    15. Ox on the Roof added a topic in Celiac Disease - Coping With   

      Well, guys, it looks like gluten wasn't the main problem. I had a 6-hour glucose tolerance test run, and the results showed that I have Reactive Hypoglycemia. Basically, my insulin doesn't know when to stop. I don't know if this is an isolated problem, or if this, combined with the vitamin deficiencies, are a result of some overarching problem. But at least I can figure out a way to stop shaking in the mornings. Going gluten-free helped somewhat because I reduced my carb intake.

      My test results (if anyone cares):

      Baseline, fasting: 74 (reference range 65-100)
      After which I downed 100 g of glucose drink

      One hour: 88 (60-110)
      Two hours: 78 (120-200)...when the glucose should have hit, I was going DOWN
      Three hours: 61 (60-140)
      Four hours: 48 (60-110)...the doctor said most people pass out when they get this low
      Five hours: 65 (60-110)
      Six hours: 74 (60-110)

      So that's that. I'm officially off the gluten-free diet, although I'll pretty much be gluten-free anyhow because I can't have a lot of carbs unless paired with lots of proteins. I have to meet with a dietician because I have NO idea what to eat anymore.

      I also wanted to thank all of you who have helped me navigate the diet these past two months. You have all been encouraging.

      • 16 replies

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