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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.

Body Image Issues
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6 posts in this topic

I haven't been able to find much on how going through celiac changes one's body image, and I need some advice and/or support. Here's the short:

One of the first very clear but undiagnosed signs of celiac disease I had was very fast muscle wasting. I blamed stressed, change in lifestyle, etc. I grew up skinny but had gained muscle over the years of landscaping and contracting but went into an academic setting and lost roughly 40lbs in 2 years. I thought I had AIDS or hyperthyroidism. Of course no one tested for celiac disease. I'd been steering clear of gluten for a few years due to a general distrust but really got it and found out I was celiac disease about a year ago.

My lifestyle has become much more sedentary than it used to be and although I'm well within the medium weight range now, I feel fat. My energy has returned and I'm no longer sluggish, etc, and I train 4-6 times per week, but I've only seen moderate muscle gain over the last month.

I am horrified to feel like I miss my wasting body, now that I started to gain fat. (I wasn't training when I began a strict gluten-free diet). I eat very few processed foods: I've always been more of a periphery shopper. If anything, I have daily multigrain Udi's most mornings with eggs. I don't go low fat but do intentionally eat high lean protein and vegetables as the base of my diet. The more greens and beans the better!

Has anyone else experienced this? How did you cope? I was never someone who valued being really skinny but liked the muscle I'd built. Having the fat come back first and looking at my measurements makes me rather depressed.

Thank you.

Lee

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Well leading up to my celiac diagnosis last January, I was mostly very tired, low energy, I did not feel like you mentioned about muscle wasting, which I could only say sounds like not absorbing foods, which this did happen to me as everything I was eating was going straight through me, I also had a contributing problem with my gal bladder that was extremely sluggish, adding to the improper digesting of foods.

With not absorbing foods, it could have an effect of muscle loss, as your then not absorbing nutrients, until the villi in your small intestines go away and your system heals, then after that you should be absorbing nutrients, unless there is something else contributing.

I found out from my chiropractor my biggest weakness was milk, as I was eating regular cereal like three times a day, I'd go through 1 gallon of milk in 3 days, but it was my biggest weakness, now I can only have rice milk with gluten-free chex, or I make egg white omlets, after I just recently find out my guts love egg whites with hash browns, some green pepers, onions.

I've been on the mend from gal bladder surgery three weeks today, and I've been walking three to four miles a day, just starting to get back to some resistance bands, and some free weights, and I'm looking for some amino acid supplements that are not dairy, since I'm trying to stay away from all milk proteins, casein is found in some of the sports drinks, like EAS and others, after I was using my free weights, I've been sore, so looking for some supplements to help with the rebuilding / healing phase after work-outs, which also brings me to wonder, the more I work out, I'm starting to feel like I'm getting fatigued again, I feel more pain after using my weights, and even after walking 3 miles, or using my bike, so I'm wondering the very same thing.

I am with you as this can be very distressing, as it's extremely difficult for me to find what's causing the reactions to types of foods, and with me being 41, not once ever worrying about eating anything, and boom, it hit me like a ton of bricks, but unfortunately this is the card we were dealt, and we have to find a way to eat things that we can digest, it takes a long time in getting this figured out, hang in there, with asking questions here, and lot's of reading, with time, this can be overcome.

I have found many things I can eat, and rely on to getting back to normal, it's a big process, but I can get back to normal with what I've found, it's just taking a chance on other foods that may or may not cause issues.

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The body image question is very interesting to me. We do not always see ourselves realisticly. Be sure what you see is real and not a preconcieved picture from your mind. When our bodies are changing it is very easy to not see what is really happening. Enlist someone you really trust (trainer, doctor, friend) to assess your body changes.

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I haven't been able to find much on how going through celiac changes one's body image, and I need some advice and/or support. Here's the short:

One of the first very clear but undiagnosed signs of celiac disease I had was very fast muscle wasting. I blamed stressed, change in lifestyle, etc. I grew up skinny but had gained muscle over the years of landscaping and contracting but went into an academic setting and lost roughly 40lbs in 2 years. I thought I had AIDS or hyperthyroidism. Of course no one tested for celiac disease. I'd been steering clear of gluten for a few years due to a general distrust but really got it and found out I was celiac disease about a year ago.

My lifestyle has become much more sedentary than it used to be and although I'm well within the medium weight range now, I feel fat. My energy has returned and I'm no longer sluggish, etc, and I train 4-6 times per week, but I've only seen moderate muscle gain over the last month.

I am horrified to feel like I miss my wasting body, now that I started to gain fat. (I wasn't training when I began a strict gluten-free diet). I eat very few processed foods: I've always been more of a periphery shopper. If anything, I have daily multigrain Udi's most mornings with eggs. I don't go low fat but do intentionally eat high lean protein and vegetables as the base of my diet. The more greens and beans the better!

Has anyone else experienced this? How did you cope? I was never someone who valued being really skinny but liked the muscle I'd built. Having the fat come back first and looking at my measurements makes me rather depressed.

Thank you.

Lee

I have the same thing right now man, I work out so hard, and it just makes me lose mass, so i try and stop cardio, but then I just gain fat. Its rough, and I'm hoping a dietician can help me soon. Maybe try contacting  dietician as well, to analyze and mediate your diet.

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I feel your pain. After decades of randomly losing weight really fast without even trying, I was not prepared for actually being able to gain weight. 

At one point, I started working out in earnest and started tracking my calories in hopes of losing the few pounds I had put on. But losing the weight was really slow and if felt as if I had to work way too hard to see any results. After the first few weeks, I upped my workout by about 40% hoping that more exercise would result in more weight loss, but instead, I just lost energy and started sleeping really poorly. I did find some information on the fitness sites about how disruptions in the body's ability to metabolize nutrients could result in the symptoms that exercise was causing for me, though it is normally a problem for people who had really low percentages of body fat who weren't eating enough calories. 

My best hypothesis was that vitamin deficiencies were interfering with my body's ability to access energy from my fat stores, so when I burned more calories than I consumed, I didn't lose fat, rather just lost energy. My worst symptom was when my blood sugar would tank while I was sleeping and I'd wake up after my body decided to hit  me with an adrenaline rush to keep my heart pumping. It is not fun to wake up multiple times a night with your heart pounding out of your chest. 

My problem was probably two-fold. I loathe supplements and their side effects so I never finished correcting the deficiencies that developed before I went gluten free, and the exercise was either making deficiencies worse or creating new ones. Granted, I did see some improvements in muscle tone and stamina while I was exercising excessively, but it was really slow going. 

Though I don't presume that my issues are the same as yours, I do hope that this might help you figure out some more things to pay attention to or to research. You can google the vitamins that exercise tends to drain from your body. And I'd also research which vitamin and nutrient deficiencies tend to interfere with metabolizing nutrients. Many of them overlap. Because gaining muscle mass was never my goal, I didn't research anything directly related to muscle so I don't know if particular vitamin deficiencies are known to be an issue.

If you haven't already, getting tested for deficiencies is always a good idea for anyone who has had malabsorption issues in the past. And I highly recommend researching the side effects and dosage levels for any supplements that you take. Even those that are water soluble and "should" get flushed from your body can cause symptoms that can become permanent, and many supplements are synthetic and have side effects that you wouldn't get from natural sources.

Though I didn't run out and get retested for deficiencies at the time, taking a multivitamin did get rid of the worst of my symptoms, allowing me to sleep through the night and to get through my exercise routine without slowing to half speed by the time I was done. I did learn the hard way that taking a B-complex supplement isn't a good idea. Too much B6.

And I quit looking for answers when I got plantar fasciitis and was forced to stop my exercise routine entirely. Pain almost sucks more when you do it to yourself.

When it comes to being sedentary, planking is a really quick way to work muscles throughout your body without having to hit the gym. And for body image in general, I've always had a penchant for lean men so I wouldn't worry about not being able to bulk up. It definitely does not take away from sex appeal.

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BREATHE.

Here's the thing: our bodies are incredibly smart and resourceful. After a period a semi-starvation, the body preferentially gains fat instead of muscle in order to protect itself from a future 'famine'. It doesn't know that the famine is over, just that if it hits again it is easier to live off fat than cannibalize your muscle stores.

Not only that, it will also preferentially lay down fat stores on your trunk and face to protect your major organs and have extra calories (fat) readily available. This will redistribute over time. You won't forever be stuck looking like a pregnant stick insect! You might also find that you temporarily (notice I said temporarily!) overshoot your pre-celiac weight range.

The good thing is that while it takes some time, this can be fixed! So what do we do?

1. Keep eating gluten-free and don't diet! You want your body to know that the famine is over. Dieting just tells it to keep laying down fat when it gets some food. 'Cheating' is likewise starving yourself via malabsorption.

2. For the same reason, split your food into regular meals/snacks so you always have something on board. Eat 5-6 times per day, not just three big meals.

3. Trust the process and your body. It will work itself out but only if you keep eating and don't diet 'cheat'.

4. BE PATIENT.

5. Food will be your main medicine, but you might also benefit from taking a multivitamin and omega-3 fish oil. The fish oil does something with how your body processes/stores fat. Just make sure they are gluten-free.

You will wake up one day and find that you have seemingly 'lost' weight over time when your body redistributes your fat stores and gains muscle/drops fat. When this happened to me people thought I had lost weight, but I'd actually gained. My body just trusted that the famine was over.

For further information, look up the Minnesota Starvation Experiment. You'll also find more info of you google something like 'anorexia nervosa AND weight redistribution' since this also happens when people recover from eating disorders.

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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.  
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      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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