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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.

Could I Have A Gluten Intolerance?
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5 posts in this topic

I'm new to the forum so hello to everyone.

I'm here because I'd like to ask your opinion on this: there are some problems I've had through my whole life. I always thought they were independent and unrelated, but I've been doing some research and I think it's possible that a gluten intolerance can explain all the things that happen to me. I'll just give you a list.

- I'm thin, but I've always had a bloated stomach, making me look 2-3 months pregnant. I'm very embarrassed about this. I always thought it was fat but it isn't, it's just a bloating that won't go away.

- I think I don't absorb nutrients properly. My nails have always been flaky and my hair brittle. That never happened to my mum at sister, who ate the very same things I did for many years, so the problem is mine.

- I am very addicted to sugar and carbs. I can't have just one piece of chocolate, that makes me very, very anxious. I'm very serious about this. I have a very strong reaction to sugar.

- I have a social phobia. Some people intimidate me and socializing makes me very anxious. I always think I come across as stupid. I always feel a mix of fear and anxiety when I have to go to social gatherings, and I don't enjoy them.

- I don't think I'm dumb, but I'm pretty sure I have some kind of deficit of attention. I get distracted very easily, my mind is constantly plagued by thoughts, I take a lot of time to do simple things like reading a book, etc. It's very hard for me to focus on one thing and keep my attention there. I think this has gotten worse as I've gotten older.

- I'm very obsessive. Some of my behaviour borders OCD. When I was a kid I even did weird things like licking my hands whenever they got in touch with anything, and things the like. I have more examples, but you get the gist.

- I suffer from depression. Maybe not severe depression but I definitely have to fight negative feelings on a daily basis. I have a low self-esteem and very frequently experience feelings of hopelessness, like I'm not worth anything and I have no remedy.

- In general I'm a very anxious person.

Could all of this be related to my diet? I've read that people suffering from these symptoms improved to some extent after going gluten-free, and after giving it serious thought I think that the source of at least some of my problems must be dietary. Why would I be constantly bloated, then?

I don't think I am a celiac because I don't suffer from abdominal pains or digestive problems, but that doesn't mean that gluten is not the cause of my problems. I'd do a test to find if I have an intolerance to something, but I'm very afraid of blood works, needles and medical tests in general, so I'm thinking about trying the gluten-free diet on my own for some time I see if I notice an improvement. After all, it can't kill me to try a gluten-free diet, can it?

Do you think that gluten may be what's causing me all these problems? The bloating in particular makes me think so.

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The symptoms you describe are experienced by many people on this forum so I think some sort of (non-celiac) gluten intolerance (NCGI), or celiac disease, could be the cause of your problems. GI symptoms don't have to occur for there to be an intolerance; I have one friend who is NCGI and the only symptoms she gets is joint pain... I'm amazed she figured out the link to gluten!

If you decide to try a gluten-free trial, please give it a few months to see the full benefit. I am a celiac and I noticed a lot of changes in those first 3 months, and am continuing to notice improvements 6 months into the gluten-free diet. Be careful to eliminate gluten that is hiding in meds, vitamins, sauces (soy, worchestershire, teriyaki), salad dressings, lipsticks and in any pre-prepared or processed food.

Milk (lactose) can cause bloating (and pain) in many celiacs so you might want to pay attention to how you react to milk and perhaps eliminate it for a time as well.

I would like to encourage you to get tested if you can. Perhaps have a small area of your arm numbed so you don't feel the needle? I mention this because celiac disease is an autoimmune disease, and once you have one, you are more likely to get more. For example, I believe well over 10% of celiacs have hashimotos hypothyroidism... you could have this tested at the same time. As well, you could have your vitamin and nutrient levels checked since we are often low in B, D, Ca and others.

Best wishes to you.

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Hello Nvsmom! Thank you so much for your reply! What you say is very interesting. I didn't know gluten could be hidden in something as lipstick. Wow, there are really many things to watch for.

You're right, I should get tested. I'm kind of embarrassed. I haven't had a blood work done for almost ten years now... Yes, I know it's crazy. But I'm just so apprehensive about it. It's not the pain of the needle, it's that for some reason the thought of having the needle there makes me restless. The last time I had a blood work done they had me lie down on a stretcher because they were afraid I would faint.

I've also thought about lactose. It's not like I eat much dairy products - just natural yoghourt and Laughing Cow wedges - but maybe that's enough to do it. But I've already reduced the intake of dairy.

I'll definitely try to go gluten-free for some months. I'll start researching all I need to know about what I can eat safely and what I can not. I don't know if this will be the reason why I have all those symptoms I listed in my previous message, but there must be something behind that. I can't have a bloated stomach and absorb nutrients so poorly for no reason at all.

Meanwhile, I'll also try to work up the courage to get a blood work done. I wish I didn't have this anxiety problem when it comes to blood works...

Thank you again for your reply. You were really helpful and I'll take all of what you said in consideration ;)

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My oldest son doesn't do well with needles either so I understand that can be tough to overcome.

If you do think you'll go for testing, remember that you must be consistantly consuming gluten for a few weeks for it to be an accurate test. If you've been eating gluten-free for a while, there is a good chance that your blood work will be negative regardless of whether you are a celiac or not. Doing the tests sooner rather than later (if you decide to get tested) would be a good idea... but easier said than done, right?

Best wishes to you.

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My oldest son doesn't do well with needles either so I understand that can be tough to overcome.

If you do think you'll go for testing, remember that you must be consistantly consuming gluten for a few weeks for it to be an accurate test. If you've been eating gluten-free for a while, there is a good chance that your blood work will be negative regardless of whether you are a celiac or not. Doing the tests sooner rather than later (if you decide to get tested) would be a good idea... but easier said than done, right?

Best wishes to you.

That's so true! Lol! Easier said than done XD A couple of days ago I found out about something called hydrogen breath test and apparently it's also used for testing food intolerances, but I don't know if this kind of test is as reliable as a blood work, or if there is some place where I can take this test in my country, for that matter. I'll have to keep looking into it!

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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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