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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.

Muscle Weakness/fatigue During Workout
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13 posts in this topic

Hi,

My name is Mason and I recently was diagnosed with Celiac (6 weeks ago). I work out at the gym about 5 times a week doing mostly upperbody exercises (bench press, biceps, tri, pec, etc etc.) as well as some light cardio. A few months ago prior to being diagnosed I was quite a bit stronger than I am on the diet. For example, I would do around 225lb as regular sets on the bench press, and now on the diet I struggle with 205lb and seem to get tired quicker. My weight has stayed roughly the same over these past weeks (around 183lb), yet I feel tired and weaker while at the gym.

So my question is, what could be causing this? How long will it last? What can I do to get back to where I was.

I was thinking I may not be getting enough carbs in my diet, but Im not sure. I am also off lactose for the next while since it was causing me some grief.

Thanks!!

Mason

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Hi Mason,

When I first when gluten-free, I had the same experience. I play very competitive hockey & soccer and was tiring out faster than I had previously. It's hard to pin-point the exact cause, but I found two possibilities: I wasn't getting enough "good" fats(Monounsaturated fats) before and after workouts (i.e. avacado, fish), and I was experiencing gluten withdrawal. I added more fats and proteins before and after my workouts, and just exercised patience waiting for my body to adjust to a huge change to my diet and lifestyle. The following seasons of hockey and soccer were much easier, and it became easier to know what worked best for me in terms of pre- and post- game meals.

It takes everybody differing amounts of time to adjust to the new diet -- anywhere from a few days to as long as 2 years. Most people are somewhere in between, and a lot experience a bit of a roller-coaster in the first year. I know patience isn't easy when you can't perform to your expectations, but don't push yourself too hard, give yourself time and you'll not only meet your expectations, but once your health improves, you may even exceed them :)

Good luck!

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Have you had your iron tested? I'm a runner and I can feel when my iron is low - I can barely make it through a 5km run whereas normally I can easily run 20+ km. Like you, I had tons of energy before diagnosis and really struggled after I stopped eating gluten. I think part of the problem is that most gluten free foods are not vitamin enriched like normal foods are.

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Hi Mason,

When I first when gluten-free, I had the same experience. I play very competitive hockey & soccer and was tiring out faster than I had previously. It's hard to pin-point the exact cause, but I found two possibilities: I wasn't getting enough "good" fats(Monounsaturated fats) before and after workouts (i.e. avacado, fish), and I was experiencing gluten withdrawal. I added more fats and proteins before and after my workouts, and just exercised patience waiting for my body to adjust to a huge change to my diet and lifestyle. The following seasons of hockey and soccer were much easier, and it became easier to know what worked best for me in terms of pre- and post- game meals.

It takes everybody differing amounts of time to adjust to the new diet -- anywhere from a few days to as long as 2 years. Most people are somewhere in between, and a lot experience a bit of a roller-coaster in the first year. I know patience isn't easy when you can't perform to your expectations, but don't push yourself too hard, give yourself time and you'll not only meet your expectations, but once your health improves, you may even exceed them :)

Good luck!

Hi Jillian,

Thanks for the input! Its encouraging to hear this from another active person! I think you could be right about the good fats too. I eat a lot of protein and fruits and veggies but I dont really see where I would be getting those fats from. I guess I will just take it one day at a time, its just weird to feel so much weaker when I dont think I have lost any muscle or weight, but I understand it is a huge adjustment and the body may take a while.

Thanks!

Mason

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Have you had your iron tested? I'm a runner and I can feel when my iron is low - I can barely make it through a 5km run whereas normally I can easily run 20+ km. Like you, I had tons of energy before diagnosis and really struggled after I stopped eating gluten. I think part of the problem is that most gluten free foods are not vitamin enriched like normal foods are.

I havent had my iron tested yet, I need to make an appointment with the nutritionist. Maybe I should start taking some Fe supplements? Or a multivitamin? Would it hurt if I am not actually deficient??

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Good fats, besides avocado, salmon, sardines - olive oil, nut butters, flax seed oil.

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You definitely need to get your iron checked. Low iron is really common amongst newly diagnosed coeliacs. Make sure you get a full iron work up done. For example my iron levels were fine but my ferritin levels (the protein that regulates the release of iron in the body) were terrible. So I felt exhausted a lot even though my iron levels were good.

Iron supplements are VERY rough on the digestive system. They cause nasty constipation and if your intestines are already damaged you will probably be unable to absorb the iron anyway for a while.

A better option is to get a series of iron injections that will boost your iron levels up within a month or two. Your doctor can do this.

Or if you want to get your energy up quickly, the best option is to get iron pumped into you intravenously. This is done as a day procedure because some people react badly to this and they have to keep an eye on you.

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I added more fats and proteins before and after my workouts, and just exercised patience waiting for my body to adjust to a huge change to my diet and lifestyle.

This is SPOT on advice in terms of the foods that you should be eating. And, yes, before and after.

Secondly, you probably should take a rest between each day of weights and work multiple muscle groups. Let your body recover (as that is when you are building muscle)

Here's and example of a typical week:

Monday: Back & Bi's

Tues: Cardio & Abs

Wed: Chest & Tri's

Thursday: Legs

Friday: Shoulders

Saturday: Cardio & abs

Sunday: Rest

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Many celiacs have one or more vitamin deficiencies due to absorbency issues -- definitely get a work-up by your doc!

I didn't have too much trouble with my iron supplements -- you just start with a very low dose and slowly work your way up, then take it at that level for a very long time (minimum 6 months). Once your iron is healthy, you can go back to a very low dose, or whatever your doctor recommends is right for you. Eat lots of raw veggies and drink cranberry juice and water to reduce any constipation issues -- plus, coffee helps :) I love coffee.

If your iron is severely low, there are the other options mentioned like I.V. Once your body starts to heal, you'll absorb the nutrients from your food better, and your body will be better at keeping your vitamin levels up where they should be.

You definitely need to get your iron checked. Low iron is really common amongst newly diagnosed coeliacs. Make sure you get a full iron work up done. For example my iron levels were fine but my ferritin levels (the protein that regulates the release of iron in the body) were terrible. So I felt exhausted a lot even though my iron levels were good.

Iron supplements are VERY rough on the digestive system. They cause nasty constipation and if your intestines are already damaged you will probably be unable to absorb the iron anyway for a while.

A better option is to get a series of iron injections that will boost your iron levels up within a month or two. Your doctor can do this.

Or if you want to get your energy up quickly, the best option is to get iron pumped into you intravenously. This is done as a day procedure because some people react badly to this and they have to keep an eye on you.

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Many celiacs have one or more vitamin deficiencies due to absorbency issues -- definitely get a work-up by your doc!

Great advice. And in my opinion, you should have your doctor run a blood test twice a year. It's nearly crazy how many things they can determine and the snapshot it provides. Most insurance plans cover this, but ask just to make sure.

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Do you get enough carbs? I've been struggling with this problem for a long time and now think maybe I am just running myself into a wall by following "healing diets" that are low carb. It's only been a few days but I think adding in quinoa, potatoes, buckwheat, plantains, more fruit and all that will help bring my energy back. No matter how much I thought protein & fat would win out, I still never had the energy needed to manage work, gym, & life at the same time.

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Don't take iron supplements unless you have been tested, though, it can acutally be pretty destructive to your liver if you are already healthy. You'll probably need them.

FYI, it took me about 6-8 month gluten-free to come back to normal energy levels for intense activity.

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Mason, what do you typically eat BEFORE a work out and AFTER?

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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