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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.

10 posts in this topic

Please help me out.

Hello, I am a 17 year old boy in CA. I have recently been made aware that i 90% have celiac. And after research, it is almost certain that I have the disease. I am scheduled for an endoscopy within the next 2 months or so. I am fairly healthy with eating and exercise as I started this lifestyle over a year ago. I lift weights 6/7 days a week. And do some form of cardio 6/7 as well. I have become overly obsessed with exercise as I get anxiety and depression if I miss a workout. I have lost 60 pounds over the course of a year, (whether or not celiac helped.) Although over the past few months I have been feeling fatigued and brain foggy, I am tired, and the only relief is through vigorous exercise. I work so hard and see little to no results so far. And over the course of a few months I have been getting worse at my physical activity. I went from doing 30+ pull ups to struggling to do 10. People tell me to take more rest days, even a week of to repair my muscles, but whenever I do, I lose all muscle tone and feel terrible. I get severely depressed. I am a little underweight and want to get bigger. So I eat more and rest more to rebuild and repair my muscles. And when I do, I feel bloated, sick, and I only gain dead weight to my stomach and lose muscle. It's terrible. I want to start gluten free now because of the wonderful stories of getting stronger and feeling clearer but I need to wait for the endoscopy. I hear problems of people who needed to stop working out for their body to heal (the villi, neuro, and muscular systems), and they eventually lose their motivation to work out. The twisted part in me is that I want to sort of keep this terrible feeling so I stay motivated to work out. Because my motivation is everything. I am severely lost, and depressed. My goal in life was to join the military, yet celiac shuts the door on those who want to join the armed forces. So my question is..

What do you suppose will change for me after the gluten-free diet? Will I feel better? Will I get stronger? Will my performance be affected? Will the depression stop? What do I do if my endoscopy result come back negative?

Thank you, this is a huge problem for me.

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A lot of these things will likely get better. Right now you are suffering from malnourishment - no matter how well you eat, your intestines aren't absorbing it properly.

Maybe you could see if the GI could fit you in sooner? Or put you on a cancellation list?

You need to continue eating gluten until all testing is finished to help ensure an accurate result. Have you had the blood work?

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With the labs that you had drawn, did you have a TSH test done?  Seems to me that Celiac and thyroid issues go hand in hand.  When I was diagnosed with Grave's disease ( thyroid condition), I had lost a ton of weight, sweating all the time, my heart would feel like it was beating out of my chest even with a normal heart rate, I was losing all muscle mass, tired, ornery, hair falling out, it got to the point I couldn't walk up the stairs. The thyroid is a tricky organ.

With all the healing related questions, all I can do is give you my two months of gluten free results.  I am feeling so much better.  Not a 100%, but then again I have been undiagnosed for pretty much my whole life (I'm 37).  My depression has gotten better, it's amazing how gluten makes you feel like crap from head to toe.  If I was you, I would be asking to get your endoscopy done asap.  The sooner you have results, the sooner you can be on your way to recovery. I don't think you have to stop working out, you just have to set a pace you can handle. If gluten is your problem you'll be back to your regular workouts in no time. You are young yet and should heal faster than someone that has many more years on you.

I am sorry that this could dash your hopes for the military. It is hard, but I hear it gets easier. This is also a wonderful place full of wonderful people that are very helpful and nice.

 

Good Luck!

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Hey Aidan,

 

There are plenty of people on here who know a lot more about depression, anxiety and compulsion than I do so I really hope one of them chimes in with some help for you. All I can say is that I believe coeliac is linked to anxiety and depression, so perhaps if you do have it and you do treat it with the gluten free diet these issues in themselves might improve. There are also people who know a lot more about testing and its accuracy so same for them!

 

With regards to exercise, I was diagnosed at the end of a three month training stint for my first marathon - the increased exercise eventually made me ill enough to see a doctor, who ordered blood tests. I've also experienced the frustration with training not paying off and that horrible cycle of thinking that putting in more training is the key, then disappointment (and to be honest, embarrassment) when it doesn't. I used to wail through the last miles of long runs (and I thought that was normal..!). Anyway I was diagnosed with coeliac and crucially for the exercise, anaemia, which meant that I wasn't getting enough oxygen to my muscles for them to work properly. My doctor compared it to training for a marathon on a diet of tissue paper - no nutrition at all.  

 

I was diagnosed in September, hobbled through my marathon two weeks later and then spent three months 'resting' - running a couple of times a week and doing perhaps two weights sessions, just to let myself recover. I also needed a break from a rigid training schedule and I began to really enjoy exercise for exercise's sake. I've been training again properly since January, building up to about five cardio sessions a week, three or four weights and lots of yoga and stretching. My motivation now is to enjoy having a body that responds properly to exercise! Seriously, the difference between training for my marathon and training for a 10 mile trail race I did in April is just unbelievable. Just now it is all a vicious cycle of a lack of results, depression and fatigue but I really hope that they improve together for you. If it is coeliac then you will need to be patient with your body and it will surprise you. Good luck. 

 

PS About worrying about losing motivation to work out while resting because resting kills results - the gluten free diet made such a difference to me athletically that after two months on it I casually smashed my 5k PB, during that rest period... 

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I can relate to the anxiety of missing workouts. Continue on with testing. My experience was I scaled back my workouts after my diagnosis and did a 5x5 training style for weight lifting and low intensity steady state cardio (if any was done) in the form of walking my dog. You'll see more gains/build more muscle when you are doing a strength program. If you are doing cardio every day and wish to gain muscle- you are going about it the wrong way. Especially since you're in a caloric deficit (assuming due to celiac symptoms and weakened strength). FOCUS on your health. The gym will always be there.

 

I'm back to training 5-6 days a week, cardio 4-5 days a week and I'm stronger than ever. Don't be discouraged by losing perceived gains. The gluten free diet will help once you're on it.

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Thanks a lot everyone, ya i think the key is patience. I just have to get through my junior year finals now, and this brain fogginess is not helping. And ya, if anyone has further suggestions for me. Much is appreciated.

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The twisted part in me is that I want to sort of keep this terrible feeling so I stay motivated to work out. Because my motivation is everything. I am severely lost, and depressed.

What do you suppose will change for me after the gluten-free diet? Will I feel better? Will I get stronger? Will my performance be affected? Will the depression stop? What do I do if my endoscopy result come back negative?

 

Keep that *memory* of the terrible feeling, and hold onto it to motivate you to stick to the gluten free diet in the future. Trust me, it's a strong motivator. Once you get back the ability to absorb nutrients, you should be able to gain strength. You may not be making the hormones necessary to build muscle (but for the love of god, don't let doctors give you testosterone).

 

When I was trying to be an elite athlete, I struggled from similar issues - I'd work and work, and see some peaks but then crash down into deep depths of fatigue. My ferritin was in the toilet, I wasn't absorbing iron. I wasn't absorbing enough calories to keep my glycogen stores up, so I could do well one day then barely move the next. That will all change when you recover, and it won't be right away after going gluten free, but you're young enough that you should heal up pretty quickly. A few months and you should see improvement, I'd guess.

 

Whether or not you will bulk up once you're better depends on your genetics, in part. Don't let yourself give in to the male body myth - not all men have to have huge pectoral muscles so that everyone can "smell what the Rock is cooking"! You can be a lean, wiry guy and be manly, if that's your concern. For some athletes, leanness is good (runners, cyclists). If part of your depression is that you can't live up to this unrealistic physical ideal, perhaps it's time to alter your goals and perceptions.

 

Using exercise to alleviate your depression is key - keep exercising even if you feel like garbage. Just don't do intensity. Don't try to do max reps. Focus on maintaining: light cardio, high-rep/low weight in the gym. Keep the neuromuscular pathways firing, the tendons and ligaments conditioned - when your body is ready to build strength, you'll have the foundation to back it up.

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Hey everybody, I am now about a month into my diet, and I have to start off by saying thank you for your support. You were all right. All of these problems listed are starting to drastically fade. The neurological problems are so deeply diminished that I now have little to no symptoms. I am a way happier person in general now. Who knew what you eat can effect the way you think ;)  But overall I am way clearer minded, and wayyy more rational about things. I am staying physically active and fit, as well as mentally strong and efficient. Yea, i pretty much just needed to endure the struggle, and now its payed off. Mood swings are gone, still have some anxiety and depression, but it is that of a normal person now, and don't mind it. Thank you all again, I will keep all of your words and advice and keep making gains in life.

 

 Have a good day.

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Great progress Aidan.  Congratulations  :D

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Glad you are starting to feel better! :)

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