Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

aidan-802

Recommended Posts

aidan-802 Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

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?

beth01 Enthusiast

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!

KCG91 Enthusiast

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... 

moosemalibu Collaborator

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.

aidan-802 Rookie

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.

C-Girl Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 1 month later...
aidan-802 Rookie

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.

GF Lover Rising Star

Great progress Aidan.  Congratulations  :D

LauraTX Rising Star

Glad you are starting to feel better! :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748

    Majesticrb
    Newest Member
    Majesticrb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.