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Exercise Problems Related To Celiac? Awaiting Biopsy Results


Hollybush

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Hollybush Newbie

Hi guys!

For a while I've been having problems with exercise, which was my presenting complaint to the doctor.Starting about two years ago I was making barely any gains in my fitness and wrote this off as simply not trying hard enough, despite working out a minimum of three times a week and eating very healthily. I ignored alot of symptoms and put it down to me being overdramatic and unfit. However, my family forced me to make an appointment when I increasingly started feeling faint afterwards and sometimes during exercise. Aside from the faintness, I exercise and feel achy, sometimes lethargic. I also feel unfocused like I'm in a mild daze and have constant phelgm stuck in my throat.

The doctor ordered blood tests and an ECG(or EKG if you prefer). Nothing was abnormal except for slightly decreased kidney function (almost unsignificant) and a postive anti-endomysial antibody (EMA). He admitted he was a bit confused as nothing obviously explained my problems, but referred me onwards for more celiac testing just in case that was the cause. Since then, I have visited another doctor (I had to get referred again from uni), seen a consultant who ordered more blood tests and underwent endoscopy with biopsy. I think they took 4 or 5 samples in the biopsy and there were no abnormalities in the GI tract.

I admit I was surprised when I got told I might have celiacs, but only now I realise I was being stubborn again and missing alot of increasing symptoms. I haven't been too bad in all honestly, just bloating, gas, nausea and tiredness, but I recently went through a very bad period of depression which almost came out of nowhere. In a way I hope that's related so I can get rid of it, it's ruined the last year! :(

I've started a gluten-free diet and this is my fifth day. I think already I'm feeling a little better, but it's hard to say. I really hope that my exercise problems resolve soon, I've missed out on a whole year of triathlon already! But I'm not exactly sure that celiac is the cause of all of that, again I hope it is so I can just be normal again!! I also really hope that the diagnosis comes through so it will be easier to convince everyone what's going on. My family is quite supportive but skeptical at the same time! I don't really help with that because I have a notorious habit of downplaying anything that's wrong with me.

The post is so long, sorry! It was only meant to be brief. I think it started as a question then turned into a bit of a rant.

Anyway, if you took the time to read this then thank you. I guess I only wanted to write down a few things and it feels good to mull it over and get it off my chest :)


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Kamma Explorer

Hi, Holly...

Welcome to the board and hopefully you feel better getting it off your chest. :)

Trying to figure out what is going on is probably the hardest part of the pre-diagnosis period. I noticed my first symptoms when I was working out and put it down to not eating right/sleeping right/feeling mentally right and so on. All the reasons you cook up to explain away what is going on but you never end up feeling better no matter how you try to remedy things.

You'll probably feel a little better day by day now that you are gluten free. I noticed that my mood increasingly became more positive as well the longer I stayed away from gluten.

Metoo Enthusiast

I am a self-diagnosed celiac. I was negative on the bloodwork, and have several family members that can't eat gluten. Have problems with semmingly random stomach pain and a skin rash.

After 5 years of trying to get back into running, I was an avid runner before having kids. I could NOT understand why I did not improve, I could go out and run 1/2 a mile everyday and everyday it would feel the same, incredibly difficult, hard to breathe and a constant struggle.

I went gluten free in November, and started running again in January, and I am now running 2 miles 3+ times a week! And everytime I go out it is easier than the last time! I remember that this is what running is supposed to be like, its a challenge but you do improve! It has made a huge difference in my excersize abilities. I realize now that after 5 years of struggling, and blaming my inability to improve on being unfit/weight, it had nothing to do with being unfit, I should have been able to improve! I know that gluten was a LOT of my running problems.

Nen Explorer

Interesting you posted this. I swear exercise NEVER gets any easier for me. I feel like its always some super uphill climb that just doesn't get easier. Years back I remember me and my dad tried running 1 mile about 3x a week for a month. It actually got EASIER for him, he was in his 50s at the time!! For me it never got easier, I always felt like crap. I must have been in my late teens/early 20s.

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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