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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.

Second Guessing My Gluten Problem...
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10 posts in this topic

I've only been gluten for about a week now...but ask the other times I tried going gluten free I would feel starving and very sleepy...now I'm still just my normal exhausted self..my arm is like limp just from holding some clothes.. How long did it take you to feel better?

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At least a good 6 months gluten free and casien free before I started really feeling better. Slowly but surely it gets better the longer your off it.

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Eight months for me. And sooo worth it. But boy, it was a bumpy ride! Hang in there!!

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how did you know to go casein free?? Is that just lactose?

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For me, it took a few weeks for some GI symptoms and migraines to improve. For other symptoms like fatigue, and pain.... well, I'm one year in and still waiting.  LOL :rolleyes:

 

You'll probably need to give it until Xmas, or even longer, before all your symptoms clear up.

 

I went entirely dairy free in my second month gluten-free (I believe). Once I was gluten-free, it became much easier to notice how dairy gave me stomach aches so that made it simpler. Someone also mentioned how dairy can contribute to acne, and that was further incentive to drop it.  i just had icecream twice last week and I did not get a stomach ache from it (yeah!) but my skin is acting up again (boo!), so from this I am guessing that I am no longer lactose intolerant (after 1 year gluten-free) but my body doesn't lile something in the dairy so I get spots.  I'll stay mostly dairy free.

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I came off gluten, not convinced it was my problem, but after only a few days my digestive problems had improved so much it came clear. I can't say when these problems started, they were so insidious. It was only with partial relief I realized how much pain I had been in.

I am learning as I go along what symptoms may be due to gluten but I would imagine, depending on the damage, some problems will take longer and some may be permanent. 

There is no reason now to cry over the past, so I try not to think about what my life could of been if someone had recognized this before my autoimmune pituitary destruction, and damage to my eyes, among other problems. 

To answer your question, how long depends on how sick you were I suppose. 

Make sure to write all this down so you can remind yourself later how much you don't want to have to do it again.

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For me, it took a few weeks for some GI symptoms and migraines to improve. For other symptoms like fatigue, and pain.... well, I'm one year in and still waiting.  LOL :rolleyes:

 

You'll probably need to give it until Xmas, or even longer, before all your symptoms clear up.

 

I went entirely dairy free in my second month gluten-free (I believe). Once I was gluten-free, it became much easier to notice how dairy gave me stomach aches so that made it simpler. Someone also mentioned how dairy can contribute to acne, and that was further incentive to drop it.  i just had icecream twice last week and I did not get a stomach ache from it (yeah!) but my skin is acting up again (boo!), so from this I am guessing that I am no longer lactose intolerant (after 1 year gluten-free) but my body doesn't lile something in the dairy so I get spots.  I'll stay mostly dairy free.

I noticed dairy gives me stomach aches too! I'm going to go dairy free for awhile starting now... ha.

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Thanks for the replies! I was actually only gluten free for 4 days when i posted this :} Some symptoms are slowly improving though.. I just want this depression completely gone!... NOW! But i'm trying to be patient..

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My mood felt worse (withdrawal) before it felt better. Days 4-20 were my worst. Hang in there if it doesn't get better this month.

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I was already depressed prior to the first month so my MD put me on an anti-depressant the same day he told me to go gluten free once it managed to get absorbed I was a lot better. It still sucked though because I was diagnosed at the start of November and had to deal with telling the family at family get togethers, which in my family revolve around food.

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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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