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Celiac Disease.... Do I Really Have It?

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Posted 20 March 2013 - 07:31 PM

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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Posted 20 March 2013 - 09:39 PM

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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    A little farting never hurt anybody... :-).

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Posted 21 March 2013 - 06:21 AM

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

Newbie Info 101

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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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Posted 21 March 2013 - 07:37 AM

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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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy



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Posted 21 March 2013 - 09:15 AM

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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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.



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Posted 26 March 2013 - 07:15 AM

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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Kelley  :rolleyes: 

Diagnosed 3/22/13



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Posted 27 March 2013 - 08:09 PM

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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Posted 27 March 2013 - 08:21 PM

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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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 30 March 2013 - 09:00 PM

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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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive

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