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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.

New To Gluten Free... Feeling Spacey
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Another question from a newbie here. It has been about a week and a half now since my daughter and I went gluten free. We both went on a regiment of supplements as recommended as well. We both have adjusted pretty easily and are feeling great. My only side effect has been that I feel a little spacey sometimes during the day. It was especially bad the first three days.... it seems to be getting a little better each day. My energy and mood are great... it is just kind of a cloudy feeling. For example during exercise, biking is easy, but with tennis my focus, timing are cloudy. Is it normal for some people to go through this? Is there something I can do about it or do I just have to wait it out until it goes away?

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Apparently you are going through withdrawal. Be glad you are only feeling spacey, some people feel like they are going off hard drugs! Gluten acts like an opioid on the brains of people who are intolerant. Your brain isn't happy with you 'depriving' it of its favourite drug.

I am glad you are otherwise feeling so much better. I am sure the spacey feeling will be gone shortly, and you will feel sharper mentally than you have in a long time.

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I feel like that too sometimes where it can happen when I simply talk to someone and then embarassingly ask them to repeat the question; but I get dizzy with it too sometimes. It only lasts for a few seconds but it's stupid.

How long do 'withdrawl' symptoms last, in general?

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Hi - I would add that besides going gluten free you also started taking some supplements and and for some reason one of them may be causing a slight allergic reaction or just not be the right supplement for you. You may not have the same requirements as your daughter. If it doesn't clear up shortly as you feel better yet, look around and see what else might be doing that to you. I find that when my neck muscles tighten up I get a little spacy. It seems to slow the flow of blood to the brain so I massage and relax the muscles and I feel much more alert.

Thanks Marian..... I get the neck thing some times too, so I know what you mean, so I will try that. As far as the supplements go, I have always taken supplemental vitamins for sports etc. I did not add anything I have not taken before, just shifted a little. I will go back to the normal amounts to see, but I dont think that is it..... Another day and another spacey feeling for me today. A couple people have told me this can happen when first going gluten free...... but a week and a half seems long... Fortunately, my body feeling better makes it feel worth it.

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It can take a while for the body to adjust, after all, if you have been loading this stuff into your body for years, it isn't going to change overnight.

I have been off gluten, dairy, most carbs and sugars for nearly 3 weeks and am still getting detox/withdrawal symptoms.

I had a permanent headache for well over a week until 2 days ago, yesterday I also had a fright with a very sore liver, but as it seems a bit better today, I think it had had a 'flush' out and off-loaded a heap of crud as I was 3lb lighter this morning than I was yesterday! Better out than in, as they say and the less fatty and congested it is, the better.

Are you sure also that there is not something else you are also getting a background reaction to? Sometimes it can be difficult to pinpoint, especially if the reaction is delayed.

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Almost two weeks gluten free now... I feel less spacey today.... definitely getting better, now it is just spells of it here and there, but obviously getting better. Thank goodness....

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I notice the same thing at times - more right after I was diagnosed than I do now. I started checking my blood sugar and found that at the times I felt "spacey" my blood sugar was low. Turned out changing my diet wreaked havoc on my blood sugar. Now that I'm more comfortable with the diet, and eating more variety, I have much more control over it. Anyway, don't want to rain on everyone's parade, but you may want to be careful.

Rebbecca

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I felt spacey for a long, long time after I stopped with the foods that made me sick. I think I had additional intolerances that took me longer to figure out that prolonged the process though.

I get spacey every time I get cross-contaminated now.

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I felt spacey for a long, long time after I stopped with the foods that made me sick. I think I had additional intolerances that took me longer to figure out that prolonged the process though.

I get spacey every time I get cross-contaminated now.

When i feel the brain fog i take a b50 complex vitamin. For me its a complete life saver.

Its actually quite astonishing how fast it works for me. I think its because my body has

issues absorbing all the appropriate b vitamins and i am deficient. B50 vitamin literally works in

about 10 min to clear my mind and make me feel back to earth.

It cant hurt to try it and from what i understand if you body has to much of the b vitamins you will

just get rid of the excess when you pee.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • 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.   
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