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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 FREE Celiac.com 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 Celiac.com Store.

If Gluten Intolerant, Immediate Symptoms?
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3 posts in this topic

After years of ups and downs with malfunctionng digestion, I am so determined to sort it out. I want a different kind of life so badly...a system that works. I can't even imagine!

Anyhow, first I tried a strict elimination, eating only a few foods I know generally work for me, planning to stick to that until I stabalized, then build. Sounds logical, right?

Except I can never really stabalize... I improved, ended a big flareup withing 24hr, but the general ups and downs continued.

When I freed up my diet, things like a bunch of veggies helped. Even lactose [a classic problem] didn't seem to make a difference. yet over the next few days my digestion headed downhill again...

All this time I HAVE stayed gluten free. I wanted to give it a chance because it keeps being suggesting, though I haven't had any reason to associate it with problems.

What I'm wondering is, can you tell right away if you have a reaction to gluten? With everythign so messed up anyhow, if I had a period where I was semi-stable [my usual coping mode] and ate, say, a bowl of cereal or regular bread, would I know right away if gluten for the first time in weeks was one of the key causes to my problems?\

NOTE: I can't get medical help/testing due to severe lack of finances and insurance--please, just share your experience with how I can know whether gluten is a problem or not!

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I have a pretty immediate reaction (within an hour or two) to lactose and corn. But with gluten it can be as much as 24 hours; I will generally know by then.I believe everyone is different in this respect.

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I am self-diagnosed gluten and dairy intolerant as of july 09. I am still working on getting all the way gluten free. i have just recently changed shampoos, lotions, toothpaste and many other items. A vaseline lotion i just bought sunday morning and tried in the store, with in an hour my energy was draining and within a couple hours total I felt like crap for the rest of the day. If something bothers me I either get really sleepy tired and/or stomach and gut hurt or grumble. it takes from 20min to 24 hrs for it to hit me.

Marsha

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    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac.com: Celiac Patients Could Get Gluten-free Stipend
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