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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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lorka150

Energy Please.

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Hey everyone,

Since realizing this summer that I have celiac disease, it's been tough, and my energy levels started hitting all time lows. When I stopped eating as much gluten, I got some energy back, and then when I went gluten-free, more came back. However, I am clearly lacking the energy to fuel my bod.

Most of the allowed grains for celiacs I have allergies to. I eat good servings of proteins and get tonnes of good carbohydrates through a ridiculous amount of veggies and fruit.

I am wondering if I should incorporate an actual bar/drink something energy related, because perhaps I am lacking in other things? I am not sure if I can find gluten-free products that I can have (because of the allergies too), but does anyone have any thoughts? I realize things like peanut butter and stuff will give me energy, but I'm thinking about all the other nutrients added to these products.

Thanks!

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http://www.glutenfreemall.com/ and many other gluten free on-line stores have search engines that let you enter which items you want to avoid. This can help narrow down the search. Can you have milk protein (casein)? If so, Boost Breezes are good and give energy. I'm unable to continue them due to the casein, but they are good and give energy. Ensure also provides a lot of vitamins with limited allergens. Red Bull Energy Drinks are gluten free too, I think. Hope that helps some. Good luck.

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I too, exercise everyday and have multiple food allergies along with

celiac disease. What I have found so far: Blue Sky's Blue Energy is gluten-free for

an energy drink. I use a sublingual B complex - B Total made by

Neutraceutical Solutions - also gluten-free, this helps me from "crashing"

which was a problem when I returned to my routine.

The only protein that I haven't reacted badly to is Shelled Hemp Seed -

I use Nutiva's though there are several brands around.

When I can tolerate it - I eat Nutiva's Hemp Seed Bar for an

extra boost. I am still searching for helpful food items

- but I find that a balanced diet while paying attention

to my activity level has worked mostly so far.

You didn't say which food allergies you have, there

may be more choices for you as mine are extremely

limited.

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Guest gfinnebraska

I exercise daily, and, yes, sometimes energy is an issue. I work all day... cook, clean... you get the picture. Some days I need a quick 10 min. snooze to be able to keep going. That is what works for me! :) I do take liquid vitamins ~ that helps as well. The exercise actually helps me get more energy for the rest of the evening, so it is well worth it.

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What vitamins do you take? and what do they specifically help you with?

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Guest gfinnebraska

I take a liquid B-12 and a mulitivitamin liquid for women over 40... :) I can't rememeber the link to the site (it is at work), but you can "google" liquid vitamins and go from there! The brand I use is: Luiquid Health ~ their web site is:

http://www.liquidhealthinc.com

Hope that helps!!

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I've been drinking a lot of blueberry smoothies lately and find that they give me extra energy. This is how I make them:

1 cup frozen blueberries

1-2 tablespoons honey

1 teaspoon vanilla

1 - 1 1/2 cups So Good Vanilla Soy milk

1 small banana (optional)

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CoQ10 is supposed to be helpful for energy. I'm taking it - on the recommendation of my doctor - as a migraine preventative, but think it's made an energy difference as well. (I take it along with my regular calcium/magnesium/vitD, B-50, and multi.)

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I work out daily as well. I began eating more animal protein (and try to stay away from beef and pork for most meals, just b/c of fat). This has seemed to help. I wanted to start drinking a protein shake, but don't have the guts or the heart to contact these companies - I just know none are safe!

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Just another vote for CoQ10 - 200-400 mg per day. Claire

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Have you had blood work done to see if you are deficient in vitamins? Low B12 causes problems with energy. Amongst other more serious problems. A multi-vitamin won't help much until your intestines are fully healed which often takes many months as you won't absorb it very well. Shots or sublingual tablets are better.

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I've not read through the other replies, but here's my advice:

-Get tests done to determine whether you have nutrient deficiencies. Anemia being the key one to check for. If you do have anemia, then some iron ought to help things.

-'Think Thin' is an energy/protein bar you can get here in the United States. At Wal-Mart, they sell for about $1.50 per bar, which isn't bad, because they're the highlight of my day, food-wise. Gluten-free, of course. They go great with my morning coffee. Packed with protein and a host of nutrients. Very good stuff, and my recommendation if you're considering a daily energy bar (try the peanut butter crunch.... oh yeah ;) ).

- I take a number of supplements: L-glutamine, Selenium, Calcium, Magnesium, Zinc, and a Multivitamin. The Selenium and Zinc are a couple that I'll probably phase out of using, but the others I plan on sticking with. If there's only one of these that you should take, it's definitely the multivitamin. Centrum is gluten-free.

- I also take Lactobacillus probiotic tablets with my big meals. I feel better when taking these everyday. It may just be psychosomatic, but some reports state that they help with the leaky gut suffered by those with Celiac disease. Who knows. They're cheap, and harmless at worst, and beneficial at best.

I'm not always energetic (who is?), but I find that plenty of sleep, plenty of food, and the supplements to my diet listed above help keep my energy high. Since going gluten-free and learning the ropes of the lifestyle, things have gotten better in the gym, and I'm much stronger than I was when chowing down on high-calorie, gluten-rich foods.

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I've been drinking a lot of blueberry smoothies lately and find that they give me extra energy. This is how I make them:

1 cup frozen blueberries

1-2 tablespoons honey

1 teaspoon vanilla

1 - 1 1/2 cups So Good Vanilla Soy milk

1 small banana (optional)

Carriefaith,

i was wondering, what type of vanilla do you use?

L

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Hi,

Have you had your thyroid checked? If your hypothyroid that could be the reason. Even if you are in the low levels of normal it can zap you're energy. Try taking tyroid aid vitamins. I get mine at Whole foods. Check the label for the gluten-free kind. My hands and feet are always like ice cicles. These vitamins seem to help that. I've also noticed less pain in my legs when I run. :)

I also take Omega-3 fatty acids. (fish oil, walnuts, flax seed). They seem to help with everything. Energy, clearer thinking, joint pain, even my hair is softer. :)

Wendy

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lorka150, I see you're from Canada. Give this a try: www.myvega.com. It is vegan and gluten-free. I find that it just works great. One scoop twice a day really helps keep my energy levels up.

Not sure if it's available in the US though?

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This is something of a concern to me as well, but rather then 'ready made energy booster' products, I'm really more interisted in gluten free 'every day' energy. So many people get their carbohydrates from wheat, such as wheat pasta or whatnot.

I don't feel like I'm getting enough enery from the gluten free products I'm eating. Can anyone give me some advice or some pointers? I'm trying to eat more beans and I do have white rice and white rice pasta, but I'm informed that white rice isn't all that good for you.

I don't have so much of a problem preventing weight loss, indeed I am trying to loose weight and build muscle, but I often feel I just don't have the energy to excersize.

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This is something of a concern to me as well, but rather then 'ready made energy booster' products, I'm really more interisted in gluten free 'every day' energy. So many people get their carbohydrates from wheat, such as wheat pasta or whatnot.

I don't feel like I'm getting enough enery from the gluten free products I'm eating. Can anyone give me some advice or some pointers? I'm trying to eat more beans and I do have white rice and white rice pasta, but I'm informed that white rice isn't all that good for you.

I don't have so much of a problem preventing weight loss, indeed I am trying to loose weight and build muscle, but I often feel I just don't have the energy to excersize.

hi! what kind of exercise do you enjoy doing? do you eat quinoa? it's an excellent source, same with buckwheat. do you bake and cook? you can make your own bars.

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hi! what kind of exercise do you enjoy doing? do you eat quinoa? it's an excellent source, same with buckwheat. do you bake and cook? you can make your own bars.

Mostly I like practising the Liechtenauer system, (on good energy days) but pretty much anything would be good.

What is Quinoa? Must look this up..

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quinoa is fantastic - it's a super grain, and a full protein. you can buy it and cook it similar to rice, or buy it in flakes, or flour.

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Carriefaith,i was wondering, what type of vanilla do you use?
McCormick will clearly label gluten, so I usually use that brand. Actually I make smoothies without the vanilla and they are just as good. I found that the vanilla got too expensive.

And a response to the original post... I was diagnosed just over 2 years ago and I just noticed that this is the first year that I have noticed my energy levels returning. I play soccer and this is the first year since my diagnosis that I actually feel like myself again :) I can actually sustain my energy instead of feeling like I am going to faint. I must of needed that much time to recover. Maybe you just need more time. In the meantime, try eating blueberries and foods high in protein for energy such as shrimp.

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Hello there, (warning - very long post)

I have been teaching fitness for 16 years, and have regular column in the industry magazine here in Canada, as well as being a master instructor and certifier for the national association. I teach daily, I teach a morning class, a mid-day class and an evening class, on top of taking martial arts on my own time. I teach about 400 students per week, am a workshop presenter, had a daily tv show on our sports channel here, and cousel professional athletes on nutrition.

I say all this just so that you know that I am a reliable source of information.

First thing, if your energy is low, you have to start at the matabolic level:

How is your hormonal balance? (especially for women, given our hormonal fluctuations and terrible fad diet habits, many women have chronically low growth and sex hormone levels). You may not know your hormonal profile, but here are a few ways to ensure your hormonal levels are adequate to maintain your basal metabolic rate high enough:

1. Avoid soy (the phyto-estrogens in soy wildly interfere with growth hormones, which in turn inhibits us from recuperating adequately from physical stressors like exercise or resistance training)

2. Ensure you are getting magnesium

3. Ensure that you are getting omega-3s (hate to say it, but cod-liver oil is the best)

4. Ensure you're hemaglobin profile is balanced (check your B-serums, and Iron)

5. Ensure you are well hydrated (about 2 litres per day, plus 1 litre for every hour of strenuous exercise - the first sign of dehydration is exhaustion, not thirst)

6. Ensure you are getting enough calories, here is how to calculate:

Basic caloric needs (depends on your gender, weight, height and muscle mass)

Add the calories for exercise expenditure (this will vary per training day)

Here is how I calculate mine:

basic calories: 2,500 (based on my stats)

Cardio: 800 calories

Resistance training: 450

Total calories needed per day: 3,750

Sounds like a lot? If I eat less than this I lose muscle mass and experience tremendous fatigue and interestingly, put on fat (crashes my basal metabolism).

7. Ensure you are getting the proper nutrients, and in a steady supply:

I recommend my athletes (if you train every day, I consider you an athlete) eat 6 to 8 small meals per day

We calculate their protein requirements in grams per meal (every meal is protein and fat based)

Carbs come from vegetables and fruits to avoid energy burn-out on processed starches and sugars

Not enough fatty protein in your diet will inhibit the production of growth hormones (again a key metabolic process for athletes) fatty protein: seeds, nuts (sunflower, pumpkin, almonds, hemp, flax are ok), salmon, beef, tuna, raw oysters are ideal. Eat organic if possible, and as raw as possible. Organic eggs are one of natures most perfect sources of protein - eat the whole egg and if possible poached with a runny yellow (avoid frying, avoid fully cooking the middle.).

8. Energy zappers to avoid:

Artificial sugars and sweeteners (they interfere with your endocrinology)

Processed and refined sugars and starches (they cause massive insulin deregulation)

Energy drinks of all kinds (if you must, one or two organic coffees per day - avoid anything that glows in the dark, ir bright orange, green or purple. LOL! Sorry gatorade, we know you are sugar water, and red bull is downright dangerous for your health).

Energy bars, protein shakes...I know this is controversial, but have a handfull of seeds, nuts and dried fruits instead. Just try to read one of the labels on those things - they are basically an amalgamation of 40 to 60 chemical products. Again, chemicals have all sorts of effects on your hormone levels. My rule of thumb is if you don't know what it is, can't pronounce it, don't eat it. Unless you are a professional bodybuilder getting ready for a competition, avoid crap like this. They take controlled risks by injecting and ingesting stimulants and additives in order to have artificially developed bodies.

Avoid packaged foods. The longer the shelf life of a food, the less it will be nutritious.

9. Sleep.

Most people are sleep deprived, and athletes need even more sleep than the average person as this is when their body repairs itself and when (ta-da) growth hormones, cortisol, is released. Not enough sleep, not enough growth hormones: your body will make you tired in order to encourage the rest it needs to produce it.

10. Still tired? Revise your work-out plan. It might be poorly constructed.

Cardio - ok to do every day as long as you are not working out to the point of muscle exhaustion.

Resistance training, ensure that you give every muscle group trained (even abdominals, its a myth that you can do those every day) a 24 hour rest.

Stretching - flexibility exercices should only be performed on resistance trained muscles on their rest day. Light stretching is ok on day of - but not deep stretches which deepen the micro tears.

Something like Yoga, Pilates can be done daily, as long as you do not experience muscle exhaustion. If you do, your muscle group requires rest. (really depends on how these are performed).

11. If you are female - it is absolutely normal to feel extreme fatigue the day of your ovulation, and the days preceeding your period - why? Higher estrogen and progesterone, lower testosterone. If you listen to your body, it will tell you to work just as hard on those days, but that your point of fatigue will come earlier and require lower weight resistance on those days. Its important to respect your body when it tells you to back off - or your metabolism will force you to take a break by conserving energy and slowing down.

Ok! I think this is my longest post EVER! Sorry - hope you stuck with my this far.

Usually I charge $150 an hour for this - but what the hay! I know how many of us fight for energy, having pernicious anemia and gluten intolerance means that I fight for energy every waking moment. The above list allows me to access and optimize that energy by revving my engine (metabolism).

Taking energy bars is like treating the symptom instead of the disfunction - and the energy bar craze is my personal pet peeve. They are bad for you and in the long run, screw up your system.

Be well - namaste.

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thanks!

i know you usually charge, but do you think perhaps you could help me out, more on a one on one level? i can give you details, if you are potentially interested, or not too busy.

thanks again,

Laurie

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I am actually launching my online services in the fall (complete with a video series! am very excited about this!) but don't mind giving people on the board a helping hand from time to time, given that I actually take away so much free advice from the community.

I love the information I get here, and unfortunately, the only expertise I can contribute is fitness related! So if I can make a small contribution, its my pleasure!

I can't commit to personal coaching online right now, given that my time online is limited (as you can see from my usually short and infrequent posts) but if I can answer specific questions for you, or point you to other sources of good information it will be my pleasure!

PS. lots of bad information out there, much of it is in fitness magazines - if you want a good source of information, ignore anything that has advertising or sponsorships from the big supplement companies.

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I exercise every other day, Take a hypoallergenic prenatal vitamin every day, and I use Hydroxycut (two tablets in the morning) every day. I have never felt better and I have lots of energy despite being anemic. I talked to my Doctor and she said that the only thing that was in there that was "bad" was caffeine, and she said that would probably help me cut back on the amount of caffeine I have daily. I have and I've lost a total of 25 pounds and 3 inches on my waist. I have no complaints about it at all, but I would recommend that you talk to your Dr. or don't take it if you have thyroid problems.

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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