Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Newbee And A Runner


nthei

Recommended Posts

nthei Apprentice

Greetings everyone. I have just been diagnosed with Celiac. Through blood test only. I have a couple questions. I apologize first because these may be repeat questions, as I'm sure as new people are diagnosed, they have questions that have been asked before. I have read a lot of the board, but not all of it. My first question is, Any celiac runners out there? If so, when you do your long runs, what energy bars or what carbs do you "load" on? Also, as I mentioned I have just been diagnosed through the blood test and my Dr. is currently talking to a gastroenterologist to get me hooked up with. I know all doctors are different, but is is customary for the specialist to want to do a scope to confirm diagnosis? Also is this definately a hereditary disease. My parents are shocked as well, as they have never heard of Celiac and they are frustrated as well. It's sometimes hard to explain everything to them, they are in their 70's however, so I assumed they wouldn't have heard of this. I haven't either until now. They can't believe they would have it. I'm not telling them they may at this point, I will wait to see what the gastro. says. But you have any answers, they are appreciated. As you all probably know, my first reaction was that of depression and (I don't know why) anger. I'm calming down now and I'm accepting this. I believe I can do this, but wow, this will be one of the biggest challeges in my life. I'm glad you all are here! This site and board look wonderful. God Bless you all.

Sorry for the lengthy message.

Have a great day!

Christina


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



Celiac.com Sponsor (A8-M):



Guest Libbyk

hi christina-

welcome to the board. I am sure you will find it a life line, as most of us have. As to your questions, I am not much of a runner, but I am an athlete (mostly of the biking, boating, x-c skiing sort.) your question comes at a good time, as I was jsut working on it today. I have been taking almonds and chocolate chips with me, or Enviro-kids bars. the berry one is pretty yummy, though not all that powerfull a fuel.

I just called up Hammer Gel and Clif Bar today. Both guys I spoke to seemed very knowledgable. The guy at Hammer said that all hammer porducts are gluten free. I only use their gel, but he said it was all safe. the clif bar guy said that at this point NONE of their porducts are gluten free, but they are working on developing a gluten-free bar. He said that the clif shots have barley in the brown rice syrup.

It is a hard change to make, and a big one. BUT, two months into the gluten-free diet, my body is starting to feel strong again. I feel strong out on my bike for hte first time in too long. Stick with it, and I hope that you get to discover a whole new body.

Good luck

Libby

Dwight Senne Rookie

Hi Christina,

Can't help you with the running part, but I would recommend you speak to your doctor and a nutritionist about this. Try to seek out a knowledgeable nutritionist, they can be most helpful. Unfortunately, the nutritionist my doctor sent me to see knew less about the gluten-free diet than I did! I have recently found much more knowledgeable nutritionists (of all places - at my local grocery store!) that are very helpful.

On to the medical part of your post. Yes, it is very typical to do an endoscopy and take several biopsies of the small intestine. While the blood tests have become much better predictors in recent years, the biopsy is still the only sure fire test. Do not be apprehensive about the endoscopy - they will give you a mild sedative and you won't remember a thing. Mine was a breeze!

Yes, Celiac absolutely is a genetic disorder that is inherited. If you are positively diagnosed, and if you are rich, you can have everyone in your family genetically tested to see who is responsible! :P However, just because it is hereditary, does not mean one of your parents will have the disease. One of them has the gene responsible for the disease, but there is something that triggers the gene to make it activate the auto immune system in the disorderly manner which is Celiac. Not everyone carrying the gene will develop Celiac.

I absolutely understand your feelings of anger and depression - been there, done that! Trust me, those feelings will pass! I have been gluten-free for almost a year, and other than some minor bumps on the road, I feel better than I have in decades!

YankeeDB Contributor

nthei, You have probably already come across this advice, but be sure NOT to go gluten-free prior to your biopsy as that may influence the results.

Many of the gluten-free grocery sites (some advertise here and you can do a search) sell energy bars that are good. My favorite is the Bumble bars.

Good luck and welcome! :D

nthei Apprentice

Thank you so much everyone for your replies and advice. I'm sure in the beginning, at least, I will come asking more questions, as I'm going through the motions of getting a complete diagnosis. My family seems to be more frustated then I am, arguing that I can't possibly have it and what not. I know they fear for me and they know that I'm scared about this initial phase, but I don't like fighting with my support structure. I also think they are scared of the possibility that they may have it, so thank you for the advice on that subject.

I must apologize, I am definately new as proven by my post, I didn't know how and I accidentally created a new topice, I'm sooooo sorry. Will do better in the future.

  • 3 weeks later...
txgoblue Newbie

Carb Boom is another gluten-free energy gel option (it and Hammer Gel are two of the tastiest out there--imho).

Search the Hammer Gel website (Open Original Shared Link) for "gluten free" and you should get two hits. One speaks to the gluten-free status of their products and the second is a surprisingly lengthy response about Celiac Disease--including some of the genetic aspects.

Carb Boom's FAQ talks about gluten-free here: Open Original Shared Link

For hydration & electrolytes, Ultima Replenisher is gluten-free (see Open Original Shared Link.

Good luck!

-------

Update: I just received a response back regarding Endurox R4--a recovery drink from Pacific Health Labs--confirming that it, too, is Gluten Free.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jeff Platt replied to Vozzyv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Weird Symptoms

    2. - cristiana replied to Vozzyv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Weird Symptoms

    3. - Scott Adams replied to More2Learn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Maybe a Possibility?

    4. - More2Learn posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Maybe a Possibility?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,103
    • Most Online (within 30 mins)
      7,748

    DDysard
    Newest Member
    DDysard
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jeff Platt
      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
    • Scott Adams
      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
    • Wheatwacked
      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass  organic meat can be fed wheat feed
×
×
  • Create New...