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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.

Celiac Disease.... Do I Really Have It?
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9 posts in this topic

This is my first post on this forum and I hope to learn a lot here! 

 

So I was diagnosed with Celiacs disease when I was 15 and I'm 21 now. The only other people in my family with it are my aunt and grandma on my Dad's side. Anyways I was diagnosed with it when I was 15 from an endoscopy, I got the procedure cause I had been having heart burn and acid reflux  and my doctor suggested an endoscopy. Anyways after I found out, being a 15 year old, I didn't pay any attention to my disease and since my parents knew little about it they didn't know what to really do either. So I basically was in no way gluten free from about 15-19, in that time I was super healthy, ran track (won a state meet, so I was pretty athletic) and at around 18 my acne was almost all gone and never had stomach aces. But I my acid reflux was still bad but no heartburn, but me and my parents decided to put me on a gluten-free diet at around 20 years old. I was not very strict with it for the first year, but I started getting bad stomach aches and diarrhea every once in a while and lower energy levels, but I delt with it. Now recently in the past 2 months I've decided to go full blown gluten-free, but now I feel tired all the time and have brain fog, and acid reflux, and my acne came back even worse, but stomach acnes arent as bad. 

 

Now I exercise a lot, I'm in great shape for my age, and I plan on getting back into track when I transfer to my new school in the fall. But my problem is, is that ever since I went gluten-free I can't seem to improve, I've just been stuck at the same physical level (muscle and strength wise) for the past year and a half and I want to get stronger so Im ready for college track.

 

My big question now is, do I really have celiacs disease? Or is my body just changing cause Im getting older? Has anyone been through something similar? 

 

P.S. Being 21 with Celiac's sucks! Can't ever have a beer with my friends and going on dates sucks cause I have to be super picky with where and what to eat.

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If you were diagnosed via biopsy than i'd say that yes you do.

 

The thing is, to me, it looks like you were a somewhat silent celiac at the beginning (aka next to no symptoms). And with the stopping of the gluten and then re-introducing it, in a not so strict fashion, I believe, has caused you to become more symptomatic.

 

It is very good that you are now on a strict gluten free diet. Your body is now in the process of healing (as celiac damages the small intestine, leading to melabsorbtion amongst other things).

 

As for the symptoms coming back, part of that may be due to gluten with drawl or another part may be do to an additional intolerance (such as soy, corn, or lactose).

 

As of right now, i'm going to say that your body is healing and that is probably the reason why you cannot get any further with your physical level.

 

:lol: there are gluten free beers.

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Hi CE,

Welcome to the forum! :)

Doctors used to think children "grew" out of celiac disease because they sometimes had a "honeymoon period" where they had reduced symptoms and improved health.  That turned out to be wrong, as did a lot of other things doctors believed about celiac disease.  People don't outgrow celiac disease.   The symptoms may be less obvious sometimes or even silent, but the disease is still there.  So, yeah, you still got it!

There are gluten-free beers, like Redbridge in some stores.  But I suggest you don't plan on drinking a lot of it.  Having celiac disease and just starting on the gluten-free diet, you need to give your body a chance to heal.  Alcohol makes it hard on the digestive system.  Making it easy on the digestive system is what you want to do speed up healing.

That also means avoiding processed foods.  If your school has a housing plan that lets you cook your own meals that is much better for you.  Sticking with whole foods instead of processed foods makes it much easier to avoid gluten in your diet.  And avoiding gluten 100% is what is needed to heal your gut.  Celiac disease cause malabsorption of nutrients.  That means your body can't absorb the vitamins and minerals it needs.  People with celiac tend to be low on the fat soluble vitamins because of that malabsorption.  Taking extra vitamins may not help because they aren't absorbed either.  So keeping your diet totally gluten-free is the way to fix that problem.


It can take up to a year and a half or more t heal the gut.  The immune system starts making antibodies quickly but doesn't stop making them quickly.  So it takes time for the damage to wind down, even after you are gluten-free.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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I think that when a celiac immediately goes gluten free, you will be absorbing far less nutrients than you otherwise would. Celiacs have leaky guts that let everything and anything in, which I suppose must mean proper nutrients. As soon as you stop having gluten though, the leaky gut due to gluten consumption seems to go away fairly quickly. But the proper, active transport mechanisms that are supposed to be how food gets into your bloodstream takes months, at least, to heal.

It's been only 2 months since you've been gluten free, and they usually say minimum 6 months for villous damage to get back to normal. In the meantime, you might be low on vitamins and minerals. A multivitamin is a good basic start, but it also makes sense to get your vitamins levels checked.

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If the biopsy said yes, then yes, you definitely have Celiac.

The thing with Celiac is that the damage is cumulative, and symptoms are often not obvious. Many of us may have had the disease since we were younger but didn't start to see symptoms until later. 20-21 is when (looking back) symptoms showed up. Of course, I had no clue what it was! You do, which is great because you can hopefully get the hang of things now and feel better for the rest of your life.

Since going completely gluten-free, your body is probably in a bit of shock. It's recovering, healing. That takes time. Be sure to take vitamins and supplements. 6 months is usually the minimum it takes to really feel a difference, and it could take longer. If you still don't feel better, then you could be intolerant to something else as well.

 

Yup, going out, dating, etc etc is a pain in the arse with celiac. If you're going to have a drink (and take it easy cause alcohol can irritate your stomach more, and as you heal you'll probably find your tolerance is down), try cider, or a distilled alcohol (grain alcohols are ok for most of us), and yes, there are some great gluten-free beers out there now. If you want to go out for dinner, find a restaurant yourself that you know is safe, or eat at home before and just go to hang out.

 

In any case, stick to the diet, be patient, and hopefully you'll start feeling better soon.

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I am the same way. I was diagnosed last week via biopsy. But I guess I am just in "denial". I just don't believe it. LOL. Although I am trying to figure out the whole Gluten-Free diet now. Now that I have started it and only been on it for a few days I still am having some loose stools. So I am just like really?!?! I am the type of person that wants results NOW. So I am just thinking seriously, on a gluten free diet and still have an upset stomach!! But I know biopsies don't lie.

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Biopsy is the gold standard, so yes you almost certainly have Celiac disease.

 

My diagnosis happened in a way that is similar to yours. I had an endoscopy because of acid reflux.  The doctor saw signs of Celiac in my intestines and took biopsies. My villi were almost completely flattened, but I never had any symptoms.  Like you I was a silent Celiac and like you I sometimes question the diagnosis because of my lack of symptoms. 

 

I have been gluten free for over two years.  I still have acid reflux.  To my knowledge acid reflux isn't a symptom of Celiac disease.  

 

What we really need is more silent Celiacs like yourself to get diagnosed.  The more of us that there are the more it will be easier to eat in restaurants and socialize with friends without having to explain your diet. 

 

I can understand how dating would be difficult at your age, but there are plenty of vegans who manage to find partners and I'd think it would be harder to date a vegan then it would be to date a Celiac.  

 

 

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What you have to realize is that if you are biopsy diagnosed, you have a damaged gut.  Your damaged gut is not going to work properly until it is healed.  No one can tell you how long this willl take :(   Until that day comes, be kind to your tummy, talk nice to it and ask it to please do a good job of digesting your food :D   Give it some probiotics and digestive enzymes, and maybe feed it some L-glutamine to help it heal. 

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As everyone has said, you have celiacs. But it'll be okay.

For being athletic with celiac's, make sure your macros are staying in a good level. I'm kind of in the same boat (more like a canoe compared to your boat), but started being gluten intolerant at 17 ish and the more I took it out, the worse of a reaction I had. I'm about to turn 21 and I swim on the Masters team at my university. 

 

Try tracking your food with your macros. Your protein intake should be 1.2-1.3x your body weight in kg at least. Make sure you're getting enough food - you can add in calories with rice if needed. Be sure to get an easy to process protein (chocolate milk is the best/cheapest) within 15-30 minutes after your workout. You might want to see if you can get a vitamin pannel done and look at if that could be affecting your training. There are a ton of resources out there about maintaining a gluten-free diet and being an athlete. Some coaches have their team keep totally gluten free during the on season to improve performance. I've seen it more in cycling than running, but I also date a cyclist who has gone gluten free with me so cycling literature is everywhere :P

 

Also, you mentioned that you were transferring to a new school. Keep an eye on your stress levels which could affect your healing as you go 150% gluten free and your athletic performance. I transferred spring semester sophomore year, and it was a stressful experience. Just overall keep an eye out for how you're feeling and how your body is reacting. And if worst comes to worst in terms of frustration, take it out on the track/trail.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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