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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.

Canceling My Colonoscopy
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10 posts in this topic

Hi everyone,

I'm supposed to have a colonoscopy tomorrow, but I'm canceling it. Besides my Dr. being condescending...I've since realized that a colonoscopy is not the test to get for Celiac testing, and that is how he says he tested for it last time.

I am also too weak for the prep. required for the test. A whole bottle of Miralax and 4 Ducolax tablets. I'm already having D 5-10 times a day (the other day, 12). I don't have enough strength not to eat AND take all that to "flush" out my system.

Meanwhile, while I postpone the test(s) and look for a new GI, I was wondering, on average, how long it takes to see results once one goes gluten-free?

I've been gluten-free before, and my stomach regulated itself. It wasn't until this doctor told me to eat gluten again that my tummy started acting crazy.

What actually happened was that I ate gluten during my pregnancy, and I had no bad reactions. Once my son was born, my symptoms came back. This doctor told me it obviously wasn't gluten sensitivity or intolerance or I would have been sick during my pregnancy. Nonetheless, gluten-free is the ONLY time my stomach has functioned "normally." Any thoughts? Any ideas on when I should start feeling better after going gluten-free again...I know it varies by person, but is there a "general" time-frame? Thank you. :)

-Julie

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Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

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Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

Interesting that you had the same results when you were pregnant! I had horrible morning sickness through my first trimester and lost a lot of weight, and then I started craving Krystal hamburgers (like White Castle burgers). I could eat 10 at a time! But amazingly, I wasn't doubled over with pain and diarrhea.

I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

Sigh....I just want to feel better. :unsure:

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it depends on if you're the kind of person who needs an Official Dx.... if you do- i would get to a different GI ASAP, stay on the gluten & get the endoscopy.... if you dont need the dx, then go off the gluten now.... that's a hard decision- and up to every individual...

anyways- my intestinal issues improve 95% with 2-4 weeks of going gluten free!

i think it was a good decision for you to cancel your Colonoscopy- what a strange doc. I dont know your age, or health- but it IS good to the Colonoscopy to rule out other illnesses.... especially if you have Celiac- its good to check the colon to make sure there's been no damage. if you need the DX- then change docs now, stay on gluten, and get both procedures done-

OR, if u dont need the dx.... get healthy now OFF GLUTEN... and get the colonoscopy later when you're healed enough to handle the Prep

best of luck to you :)

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I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

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I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

The reason I continued eating gluten after my pregnancy is because my new GI did bloodwork that came back normal (I had to change GI's once my other one moved out of state) and the new GI also told me that I didn't need to be gluten-free. :blink:

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That's confusing all right. :blink: The blood tests can shift around, especially anti-gliadin.

I think you have your answer about gluten, though. Feel better soon!

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Were you gluten free when you had the 2nd blood test done? If yes, it is supposed to come back negative. That does not mean it is gone, just that you are managing the diet well. Also, if the doc didn't run all the tests, he/she could have missed the one that was positive.

After learning from these folks and online journal articles, I would stay gluten free for life even if I only had one positive result.

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celiac being autoimmune, it is no surprise that it wanes during pregnancy.

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I became ill after a pregnancy. Been in poor health ever since. These stomach problems I'm having didn't start right away after the pregnancy though, but a few months afterward.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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