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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.

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Hi Everyone!

My name is Robb Wolf. I’m a strength & conditioning coach in Northern California. I, my mother and most of her side of our Scott/Irish family have celiac. I am a former research biochemist with special interest in lipid metabolism. You folks have a great community here; I’d love to participate! If you have any questions I’d love to help fuel your celiac athletes.

Robb

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Welcome!

You didn't mention whether you had it, too. Not that it matters, there are others here who don't but have family member who do, so I'm just curious.

I think it's the weight training that kept me from looking very sickly when I was losing so much weight, this is a good niche for you. There have been several threads on how to gain weight where exercise is brought up, and also during how to lose discussions. It will be good to have a "resident expert." :D

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Welcome!

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Great to have you join us. The more information the better!

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Hi Everyone!

My name is Robb Wolf. I’m a strength & conditioning coach in Northern California. I, my mother and most of her side of our Scott/Irish family have celiac. I am a former research biochemist with special interest in lipid metabolism. You folks have a great community here; I’d love to participate! If you have any questions I’d love to help fuel your celiac athletes.

Robb

Welcome Robb! I am also in Northern California. Since going gluten free I have gained quite a bit of weight. Weight that wasnot totally necessary. A few lbs were fine but now I am pushing more than 15. I am a runner who has transitioned in triathlons the past year or so. I am doing my first 1/2 Ironman in Aug.

I want to do better in all portions of the tri but I find these extra 15 lbs or so are weighing me down. I know I have developed some muscle but I know I have some "non-muscle" to lose and the more I train, the hungrier I get. Any suggestions? I have stopped eating the gluten free foods (except for a slice of bread occasionally). I normally do corn tortillas. My one addiction is sugar though. I can't stay away. I know I must be missing something in my diet to cause these unbelievable cravings. I have recently tried adding more protein (I am a vegan too) to each meal.

Is there anything that will help my metabolism. I really feel like it is gone. I am 29 and a female by the way. Thanks!

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Robb-

Hi! If you are willing to help, I'm sure there are some athletes here who would love some *fueling* tips. Sometimes lack of energy can't be helped at the beginning stages of healing, but oftentimes it can be improved. Here have been quite a few threads on this topic, here is one example, if you are interested...

http://www.glutenfreeforum.com/index.php?s...9&mode=threaded

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Wow! Thanks for the warm welcome everyone! I was diagnosed with celiac in ’98 but it was not until the other day that I thought of looking for some gluten-free/celiac sites. Sooo much lost time!

Pturse-

Here is my $0.02. I’ve found it very rare that eating vegan can sustain either favorable body composition or high-level athleticism. Now there are exceptions but this is where the law of averages comes in…in general how many people excel on a standard high carb, low protein, and low fat diet? Again this is just my opinion, but if you are eating vegan for “health” reasons I think your efforts may be counter productive. If it’s for political/philosophical reasons then you may need to evaluate (assuming what I am saying is accurate) if you are willing to take a hit on your health for the sake of the ideology. If this is in any way sounding hoity-tooity or condescending please send me a psychic kick to the fanny and I will take a time out!

The sugar cravings are likely a result of meals that have too many carbs and not enough fat and protein. If you follow the pattern I’ve seen (and personally experienced) you eat a meal, perhaps rice, lentils and some veggies and in 30-45 min you are ravenous for sugar. As a comparison try eating a meal that consists of 5-7oz of tofu stir-fried with some chopped veggies, 2-3 TBL. Olive oil and a handful of nuts. Lots of protein and fat? Yes indeed and you will not have a carb roller coaster form that meal. Give a few meals like this a shot and see how you feel. If you must remain vegan then you will need to shift food composition in this direction. When you do you will lean out very easily and sugar cravings should become infrequent. My main concern with this approach is a lack of food variety, particularly your protein sources. You are relegated to tofu, temph (obviously NO seitan!!!) and rice protein powder. Not much variety and this is just asking for food allergies to the chronically consumed soy foods. Either way I’d be happy to help you get this dialed in. Just try the higher protein/fat meals so you can critically evaluate what I’m talking about. Nothing instructs like personal experience! Let me know how that goes. Lets look to find a nutritional strategy that will help you to lean out and then we can tinker with your training.

Jen-

I’d love to help in this area anyway I can. Have you folks talked about the use of glutamine to help repair the microvili? Coconut oil and or MCT oil can be an option for a dense calorie source during intestinal healing. Since the brush border of the intestines is damaged it can make fat absorption difficult. MCT’s (medium chain triglycerides) and coconut oil can be helpful in this regard. Supplemental fish oil is very important once normal digestion is returned as folks are chronically essential fatty acid deficient due to long standing intestinal absorption issues.

If y’all know all this stuff my apologies for completely re-inventing the wheel!

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Robb-

Interesting on the fatty acids... Was reading about a deficiency linked to depression (fairly prevalant here--also for various reasons).

L-glutamine has been discussed here, althought not as much recently. But there are a few here who do take it on a consistent basis and feel they notice improvement. Could that be incidental, I've wondered at times? I did take it initally, but not for very long. It has taken me since Feb of 2005 to just now start getting the old energy back... Coconut oil and MCT...I'm sure some here would be interested in that. Although--after healing begins many of us are more concerned with stopping the gain :lol:

Out of curiousity--what was your area of research or focus? Anything you could describe without overwhelming us "normal" folk ? :D

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Wow, Robb, thank you very much for that ".02 reply." I really appreciate it.

To answer some of your questions, I am not vegan for political or religious reasons. Mainly because 1. I am allergic to dairy (that was discovered when I was about 5 years old) and 2. I just never really "liked" the taste of meat and so at 16, decided to stop eating it. However, when I first went gluten free a few years back (I have been on and off this diet so many times, trying now for good). I happened to be in Maui at one crucial point in the diet when there was nothing for me to eat, but they had fresh Ahi Tuna Steaks. My hubby and I never liked sea food but both agreed to give it a try. Not bad. So I guess my "vegan" label should no longer apply, just so used to saying it so that restaurants don't mess up & give me cheese or beef. I can safely say, that now I indulge in a little fish (maybe once every other month) and usually Ahi. It makes eating out easier but I cannot do it in large amounts, I think my system isn't quite used to having that type of protein.

I agree with your comments about the sugar. I have just started reading a Sugar Addict's Road to Recovery and she recommends a little protein at every meal, especially breakfast. Also, no snacks and lots of water. So, I am giving that a shot. I am trying eat Ahi more frequently and I have started eating eggs (or rather egg whites and egg beaters) more as well. Laying off the carby foods unless I have a big training session or a race. My one road block is I am around the sugar a lot (i.e. at work) so I am doing my best to not be around it as much (such as taking a route not past the "candy desk"). It isn't donuts or anything it's pure candy and not even chocolate.

I also think my brain to stomach indicator is um, broken. :P I need to learn to eat slowly. I am guilty of eating too quickly and often standing up.

I really appreciate all your advice and tips. My training has been going okay but for the amount that I do, I would think that I'd be losing a pound if not two. I am not worrying too much about it. Training time is not the time to try and lose weight. But I have been slightly dehydrated lately no matter how much water I consume.

I will try the higher protein/fat diet a little more. Too much fat doesn't sit well with my already sensitive stomach nor does too much protein. Baby steps. B)

Have a great weekend! It's been beautiful in Northern CA the past few days!

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Robb-

Interesting on the fatty acids... Was reading about a deficiency linked to depression (fairly prevalant here--also for various reasons).

L-glutamine has been discussed here, althought not as much recently. But there are a few here who do take it on a consistent basis and feel they notice improvement. Could that be incidental, I've wondered at times? I did take it initally, but not for very long. It has taken me since Feb of 2005 to just now start getting the old energy back... Coconut oil and MCT...I'm sure some here would be interested in that. Although--after healing begins many of us are more concerned with stopping the gain :lol:

Out of curiousity--what was your area of research or focus? Anything you could describe without overwhelming us "normal" folk ? :D

Hey Jen!

If one becomes deficient in n-3 fatty acids (omega 3 fatty acids), like those found in fish oil, virtually every system is affected and not for the better. Most people are not getting enough n-3's due to an imbalance of n-3/n-6 fatty acids that is created because our meat and dairy are fed grains such as corn that are very high in n-6 fatty acids. Grass Fed meat is a great alternative if one can find/afford it. Short of that taking 3-8g of fish oil per day will bring things back to normal. Costco's Kirkland brand fish oil is excellent quality and very inexpensive.

L-glutamine is helpful in that it can be a preferred energy source for the cells of the intestinal epithelium but these cells actually repair/grow fairly quickly. The gut lining can recover fairly quickly but one is typically in a state of systemic inflammation that takes many months to heal. This may be some of "drop-off" in efficacy of the glutamine.

My area of research was broadly "nutritional biochemistry" but my main focus when I worked at the Fred Hutchinson Cancer Research Center was lipid metabolism. We were a support lab that studies the fatty acid profiles of study subjects and controls for many of the large studies like Shanghai, Nurses Health (follow-up) and a few others. I also did a research fellowship with Prof. Loren Cordain in the area of Paleolithic Diet research. Specifically I looked at small growth called skin tags and their relationship to chronically elevated insulin levels and potential predictive strength for epithelial cancers (breast, prostate, colon).

If you ever have insomnia I promise my rambling can fix it!

Wow, Robb, thank you very much for that ".02 reply." I really appreciate it.

To answer some of your questions, I am not vegan for political or religious reasons. Mainly because 1. I am allergic to dairy (that was discovered when I was about 5 years old) and 2. I just never really "liked" the taste of meat and so at 16, decided to stop eating it. However, when I first went gluten free a few years back (I have been on and off this diet so many times, trying now for good). I happened to be in Maui at one crucial point in the diet when there was nothing for me to eat, but they had fresh Ahi Tuna Steaks. My hubby and I never liked sea food but both agreed to give it a try. Not bad. So I guess my "vegan" label should no longer apply, just so used to saying it so that restaurants don't mess up & give me cheese or beef. I can safely say, that now I indulge in a little fish (maybe once every other month) and usually Ahi. It makes eating out easier but I cannot do it in large amounts, I think my system isn't quite used to having that type of protein.

I agree with your comments about the sugar. I have just started reading a Sugar Addict's Road to Recovery and she recommends a little protein at every meal, especially breakfast. Also, no snacks and lots of water. So, I am giving that a shot. I am trying eat Ahi more frequently and I have started eating eggs (or rather egg whites and egg beaters) more as well. Laying off the carby foods unless I have a big training session or a race. My one road block is I am around the sugar a lot (i.e. at work) so I am doing my best to not be around it as much (such as taking a route not past the "candy desk"). It isn't donuts or anything it's pure candy and not even chocolate.

I also think my brain to stomach indicator is um, broken. :P I need to learn to eat slowly. I am guilty of eating too quickly and often standing up.

I really appreciate all your advice and tips. My training has been going okay but for the amount that I do, I would think that I'd be losing a pound if not two. I am not worrying too much about it. Training time is not the time to try and lose weight. But I have been slightly dehydrated lately no matter how much water I consume.

I will try the higher protein/fat diet a little more. Too much fat doesn't sit well with my already sensitive stomach nor does too much protein. Baby steps. B)

Have a great weekend! It's been beautiful in Northern CA the past few days!

If fish works you can try some options like Trader Joes caned Wiled Alaskan Salmon. Great stuff. Dice some romaine, put 1/2 the can on and cover with grated ginger, grated carrots and some sesame oil...pretty darn yummy! Trader Joes also carries some small Portuguese sardines (don't run!) Bella Olahao. Again really yummy and these fish are much lower on the food chain than tuna so issues of mercury toxicity are removed. If you are doing eggs I'd try to get "omega 3" enriched eggs. They may go by the name "EPA/DHA" eggs or n-3 (omega three). Costco has a super good quality n-3 egg in an 18pack. Eat them yolk and all!!

Let me know how this goes and any way I can help. You are right! N-California has been spectacular the past few days. I hope the weather has not set us up for a fall when it turns hot!

Take care and have a great weekend.

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Hi Rob, welcome to the forum. I am excited to have someone with your expertise on this forum and one who is willing to offer assistance. In the early 80's, I was a college athlete. I am now 45 years old and today I ran for the first time in 12 years. I have spent the last twelve years completely unable to run, barely able to lift weights and experienced an intense muscle failure even upon acceration during the first few minutes of biking, walking or walking up stairs. I have been told that I have a metabolic myopathy in the past and was recently diagnosed with celiac disease. I have lost thirteen pounds since february and am excited to continue with weight loss. My question is, how do I get myself back to a regular running/weight lifting routine after so many years, what can I do to control my ravenous appetite after exercise and how can I increase stamina with diet? Thanks for your help. Tara

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I don't know if I am the exception to the rule or not.

I have been gluten free for five months.

I have not suffered undue tiredness, even before my diagnosis.

I have noticed a difference in my appetite.

Before I used to be so ravenously hungry, and I ate bread, and that probably kept the cycle of hunger going, and I was overweight. I would do an early morning walk with a friend for 45 minutes and then walk the dog at night for another half hour. So I was active, but not overly. I had lost about 12 kilos before dianosis. That was hard to loose.

Now that I can't have bread, I do occassionally have gluten free bread, but mainly have rice or corn crackers, but not a lot of them. The rest of the time, I fill up on fruit and veges and maybe a couple of servings of milk, and a good helping of protein every day, usually meat or cans of tuna or salmon.

So the diet is pretty varied, forgot to mention, cereal for breakfast with yoghurt, it would be a rice porridge or a museli. I try to avoid preservatives, colours and flavours as I don't think they agree with me. This diet I feel suits me, I am happy on it and it is filling, and I don't feel like I am filling myself up on crap. I would never have thought this way last year!

I find that most gluten free products aimed at us, are usually very high in fats and are probably no better than there counterparts in the gluten world, so I avoid them most of the time. I do have my treats.

What has amazed me is that I am no longer have that hunger to eat nonstop, I am not so worried about loosing weight, even though I have not lost any since diagnosis, I am exactly the same weight. But I feel more in control of my weight and what I eat. I get a bit worried that I might get bored with the food. Last week I ditched my raw carrot as a snack. Have had too many of them. But we are in fruit and vege heaven here in NZ. There is an orchard up the road, and the fruit and veges are wonderful.

I still walk every day. You can't tell the dog not to walk, she would cry non-stop until I walk her. And my friend would drag me out of bed if I did not walk with her. Talking about bed, I sleep a lot better now, unless I eat chocolate.

My energy levels are the same, maybe a little better, so I feel I am doing okay, but I can see room for improvement, and once I get down to 10 stone I will be a lot better off, and that is only another two stone away.

Cathy

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Wow, Robb, thank you very much for that ".02 reply." I really appreciate it.

To answer some of your questions, I am not vegan for political or religious reasons. Mainly because 1. I am allergic to dairy (that was discovered when I was about 5 years old) and 2. I just never really "liked" the taste of meat and so at 16, decided to stop eating it. However, when I first went gluten free a few years back (I have been on and off this diet so many times, trying now for good). I happened to be in Maui at one crucial point in the diet when there was nothing for me to eat, but they had fresh Ahi Tuna Steaks. My hubby and I never liked sea food but both agreed to give it a try. Not bad. So I guess my "vegan" label should no longer apply, just so used to saying it so that restaurants don't mess up & give me cheese or beef. I can safely say, that now I indulge in a little fish (maybe once every other month) and usually Ahi. It makes eating out easier but I cannot do it in large amounts, I think my system isn't quite used to having that type of protein.

I agree with your comments about the sugar. I have just started reading a Sugar Addict's Road to Recovery and she recommends a little protein at every meal, especially breakfast. Also, no snacks and lots of water. So, I am giving that a shot. I am trying eat Ahi more frequently and I have started eating eggs (or rather egg whites and egg beaters) more as well. Laying off the carby foods unless I have a big training session or a race. My one road block is I am around the sugar a lot (i.e. at work) so I am doing my best to not be around it as much (such as taking a route not past the "candy desk"). It isn't donuts or anything it's pure candy and not even chocolate.

I also think my brain to stomach indicator is um, broken. :P I need to learn to eat slowly. I am guilty of eating too quickly and often standing up.

I really appreciate all your advice and tips. My training has been going okay but for the amount that I do, I would think that I'd be losing a pound if not two. I am not worrying too much about it. Training time is not the time to try and lose weight. But I have been slightly dehydrated lately no matter how much water I consume.

I will try the higher protein/fat diet a little more. Too much fat doesn't sit well with my already sensitive stomach nor does too much protein. Baby steps. B)

Have a great weekend! It's been beautiful in Northern CA the past few days!

Not to be a downer, but watch your intake of tuna - it is loaded with mercury. You might want to try some other fish like salmon - less mercury altogether. It used to be advised that pregnant women and children limit themselves to one can of tuna a day; now they say that for all women. Also, tuna steaks have even more mercury than cans of tuna.

Did you have any mahi mahi in Hawaii? I think it is a snapper. Yum!

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My area of research was broadly "nutritional biochemistry" but my main focus when I worked at the Fred Hutchinson Cancer Research Center was lipid metabolism. We were a support lab that studies the fatty acid profiles of study subjects and controls for many of the large studies like Shanghai, Nurses Health (follow-up) and a few others. I also did a research fellowship with Prof. Loren Cordain in the area of Paleolithic Diet research. Specifically I looked at small growth called skin tags and their relationship to chronically elevated insulin levels and potential predictive strength for epithelial cancers (breast, prostate, colon).

Welcome Robb, I am also excited to have someone with all of your knowledge be a part of this forum!!

I noticed you mentioned skin tags. I just had a larger one removed this last week. I still have several really small ones in various places on my body, and they seem to run in my family on my mom's side, as well as diabetes. When I have my blood sugar tests taken I am always within normal range, the fasting level as well as the extended hour one where you drink the sugar solution throughout.

As far as my diet, it's a little tricky since I have multiple food intolerances, and for the most part I just don't have enough to vary and eat. All starches and grains make me swell up with enormous amounts of fluid retention that eventually will turn into weight gain. But if I take the starches/grains out I feel like a walking zombie, literally no energy whatsoever, losing a pound a day, and my bowels won't move for anywhere up to 7-15 days. This is the pattern I have been stuck in, and battling, for about 14 years. Either severe edema and weight gain with bowel movements, or weight loss and no energy without bowel movements.

This has really interfered with my fitness level. I had always been an athlete. I swam competitively for years, and was always really active with crosstraining- running, hiking, weights, aerobics. Now, I am either too swollen or I don't have any energy to burn.

Any advice or suggestions you might have would be greatly appreciated.

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Rob, how do you prepare the sardines? I've tried buying sardines a couple of time but wasn't able to get past the yuck factor. Your salmon recipe looked good.

Have you studied coconut oil much? My husband is currently taking it to reduce inflammation for autoimmune disease and for a yeast infection. One doctor thought it might cause inflammation instead of calming it but I'm not sure she's up on her research.

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Welcome Robb! Great to have you.

You know, I used to be so strong, trained (weights and cardio) five days a week and climbed, hiked or skiied on weekends....not any more. :( I quit everything about 3 or 4 years ago...was sick of the gym and lost my urge to do crazy things, somehow. I think it had a lot to do with malnutrition. Just wondering, at 44, if I'll ever get the urge to train back, and I hope I will....

But, I digress. Can you address anything about a serious arm strain I've got going on? Totally blew out my forearm, and I have never had an injury, thank God (except whiplash), while moving my couch into another room (um, had to put it on its end and on its side to get it un-wedged from the doorway - I think it really was too big and too heavy and I should have waited for a strong male to do it :angry: )....I can no longer even undo my seatbelt due to right fore-arm strain. Will this ever get better? :( I can feel the raised knot/cord in the top of the forearm and it is going down to my hand and up my whole arm now. I can't really straighten it any more, either. I hate this! Really sympathizing with people who are injured or physically impaired, my friend has to come over and take a nail out of a stud in the wall (also didn't help that I hung a 50-pound mirror the same day as couch moving).

Any advice? Thanks!

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Welcome Robb, I am also excited to have someone with all of your knowledge be a part of this forum!!

I noticed you mentioned skin tags. I just had a larger one removed this last week. I still have several really small ones in various places on my body, and they seem to run in my family on my mom's side, as well as diabetes. When I have my blood sugar tests taken I am always within normal range, the fasting level as well as the extended hour one where you drink the sugar solution throughout.

As far as my diet, it's a little tricky since I have multiple food intolerances, and for the most part I just don't have enough to vary and eat. All starches and grains make me swell up with enormous amounts of fluid retention that eventually will turn into weight gain. But if I take the starches/grains out I feel like a walking zombie, literally no energy whatsoever, losing a pound a day, and my bowels won't move for anywhere up to 7-15 days. This is the pattern I have been stuck in, and battling, for about 14 years. Either severe edema and weight gain with bowel movements, or weight loss and no energy without bowel movements.

This has really interfered with my fitness level. I had always been an athlete. I swam competitively for years, and was always really active with crosstraining- running, hiking, weights, aerobics. Now, I am either too swollen or I don't have any energy to burn.

Any advice or suggestions you might have would be greatly appreciated.

Hi Julie!

Skin tags appear to be a result of chronically elevated insulin levels. Now from my perspective the "normal" range for many lab tests is anything but normal and it is likely not indicative of being healthy. Keep in mind that a "normal" glucose tolerance test may be suspect simply form the fact that the numbers mainstream medicine accepts as normal may not be great for some people. Related to this is the fact that an oral glucose tolerance test does not show insulin levels either for that moment or throughout the day and that may be the more important consideration for skin tags, diabetes (type2), some types of cancers etc.

Hyperinsulinism can manifest in different ways in different people. One person may be overweight, another person may look slim but suffers form polycystic ovarian syndrome and depression. It's not a one disease, one symptom scenario. This is why hyperinsulinism is broadly categorized as "Syndrome X" and the list of problems related to elevated insulin levels grows longer with every day.

So what to do?

1-I'd try rotating your protein sources. Chicken one week, beef the next, pork the next etc. If the food sensitivities are really a problem sticking with one main protein source for about a week and then not doing that for a few weeks can be helpful.

2-Starches can be problematic not only from an insulin perspective but also digestion wise. Yams a sweet potatoes may be less problematic digestively but can be easily overdone...have you tried these? If you add loads of steamed veggies to your plan make sure to add a generous amount of olive oil, nuts or avocado to every meal. You need those fats to establish normal intestinal function and it will help you switch your metabolism to fat for most of your energy. You may feel like dookey for a few days. If you want to post a food log that will make it easier to see how you are responding to a specific protocol so things can be tinkered.

3-dairy can be problematic both with regards to insulin levels but also is a cross reactor with many celiacs. Oddly enough high fructose fruits such as apples and pears can also be problematic. Melons and berries which have a larger amount of glucose than fructose are often better tolerated.

Let me know if that stuff makes sense and if you want to get going on a plan. It may take some tinkering but you can find something that works!

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Hi Rob, welcome to the forum. I am excited to have someone with your expertise on this forum and one who is willing to offer assistance. In the early 80's, I was a college athlete. I am now 45 years old and today I ran for the first time in 12 years. I have spent the last twelve years completely unable to run, barely able to lift weights and experienced an intense muscle failure even upon acceration during the first few minutes of biking, walking or walking up stairs. I have been told that I have a metabolic myopathy in the past and was recently diagnosed with celiac disease. I have lost thirteen pounds since february and am excited to continue with weight loss. My question is, how do I get myself back to a regular running/weight lifting routine after so many years, what can I do to control my ravenous appetite after exercise and how can I increase stamina with diet? Thanks for your help. Tara

Tara-

I guess it goes without saying go slow in the beginning! Jumping straight into running may be too much. Walk, stretch, and get a little sun in the process. As you feel stronger wear a backpack with 5-10lbs of books in it and step up your walking pace. You cannot fire a cannon from a canoe! You need to re-establish a base of activity then add things like pushups against the wall, then from the knees etc. Safe easy progression.

Nutritionally grains (all types, particularly wheat) legumes and dairy can pose serious problems for autoimmune conditions. I'm not sure if your myopathy is autoimmune but it is common to see lupus, and RA amongst celiacs (I have RA but its pretty well controlled with diet).

So, try some easy non-fatiguing exercise 4-5 days per week for a week or two and see how that goes. Get 4-6 small meals with lean protein, lightly cooked veggies (raw may be a bit much for your digestion) and good fats form nuts, olive oil avocadoes etc. Try to keep all processed foods out of the picture 5 days out of 7. Its not rocket science but it works pretty well!

Rob, how do you prepare the sardines? I've tried buying sardines a couple of time but wasn't able to get past the yuck factor. Your salmon recipe looked good.

Have you studied coconut oil much? My husband is currently taking it to reduce inflammation for autoimmune disease and for a yeast infection. One doctor thought it might cause inflammation instead of calming it but I'm not sure she's up on her research.

The Bella Olhao sardines are pretty good as is. I just dump the can in a bowl of greens and go to town. You can find them at this site if you do not have Trader Joes nearby:

http://www.mybela.com/

Coconut oil can have some antimicrobial activity but if your husband has chronic inflammation and a potential yeast condition it’s a pretty safe bet he has insulin regulation issue. Some good books to read are The Omega Rx Zone and the Pericone Weight Loss Prescription. Elevated insulin levels lead to an increase in the prostaglandin pathway that governs inflammation. Smart nutrition, fish oil and exercise can dramatically improve most situations.

Welcome Robb! Great to have you.

You know, I used to be so strong, trained (weights and cardio) five days a week and climbed, hiked or skiied on weekends....not any more. :( I quit everything about 3 or 4 years ago...was sick of the gym and lost my urge to do crazy things, somehow. I think it had a lot to do with malnutrition. Just wondering, at 44, if I'll ever get the urge to train back, and I hope I will....

But, I digress. Can you address anything about a serious arm strain I've got going on? Totally blew out my forearm, and I have never had an injury, thank God (except whiplash), while moving my couch into another room (um, had to put it on its end and on its side to get it un-wedged from the doorway - I think it really was too big and too heavy and I should have waited for a strong male to do it :angry: )....I can no longer even undo my seatbelt due to right fore-arm strain. Will this ever get better? :( I can feel the raised knot/cord in the top of the forearm and it is going down to my hand and up my whole arm now. I can't really straighten it any more, either. I hate this! Really sympathizing with people who are injured or physically impaired, my friend has to come over and take a nail out of a stud in the wall (also didn't help that I hung a 50-pound mirror the same day as couch moving).

Any advice? Thanks!

Susan-

Sorry I did not see this sooner...I had my browser set in some weird configuration and only see a few of the posts! Ice massage to the hurt area is super important in the first 48hrs. Take a Styrofoam or paper cup and fill it 2/3 full of water. Freeze it. Peel the top of the cur down so you have 1-2" of ice exposed and an insulated handle. Push around on the hurt area and find the tender spots. Ice those spots by gently rubbing the ice in small circles until that area is numb (1-4 min depending upon the structure). It's not the most pleasant thing but it knocks the inflammation down. Do this 3-4 times a day initially and then anytime its sore. Move it as much as you can without sharp pain...just keep it mobile. Once you have pain free range of movement its time to start strengthing. Let me know when you get there and we can figure out some options.

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Hi Robb - great to have you on board.

Can anyone tell me where I can get coconut oil? Maybe a stupid question, but does it come in a bottle or are they capsules?

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Hi Robb - great to have you on board.

Can anyone tell me where I can get coconut oil? Maybe a stupid question, but does it come in a bottle or are they capsules?

You can get it at health food stores. I'd recommend getting one that comes in a glass jar.

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Hi Julie!

Skin tags appear to be a result of chronically elevated insulin levels. Now from my perspective the "normal" range for many lab tests is anything but normal and it is likely not indicative of being healthy. Keep in mind that a "normal" glucose tolerance test may be suspect simply form the fact that the numbers mainstream medicine accepts as normal may not be great for some people. Related to this is the fact that an oral glucose tolerance test does not show insulin levels either for that moment or throughout the day and that may be the more important consideration for skin tags, diabetes (type2), some types of cancers etc.

Hyperinsulinism can manifest in different ways in different people. One person may be overweight, another person may look slim but suffers form polycystic ovarian syndrome and depression. It's not a one disease, one symptom scenario. This is why hyperinsulinism is broadly categorized as "Syndrome X" and the list of problems related to elevated insulin levels grows longer with every day.

So what to do?

1-I'd try rotating your protein sources. Chicken one week, beef the next, pork the next etc. If the food sensitivities are really a problem sticking with one main protein source for about a week and then not doing that for a few weeks can be helpful.

2-Starches can be problematic not only from an insulin perspective but also digestion wise. Yams a sweet potatoes may be less problematic digestively but can be easily overdone...have you tried these? If you add loads of steamed veggies to your plan make sure to add a generous amount of olive oil, nuts or avocado to every meal. You need those fats to establish normal intestinal function and it will help you switch your metabolism to fat for most of your energy. You may feel like dookey for a few days. If you want to post a food log that will make it easier to see how you are responding to a specific protocol so things can be tinkered.

3-dairy can be problematic both with regards to insulin levels but also is a cross reactor with many celiacs. Oddly enough high fructose fruits such as apples and pears can also be problematic. Melons and berries which have a larger amount of glucose than fructose are often better tolerated.

Let me know if that stuff makes sense and if you want to get going on a plan. It may take some tinkering but you can find something that works!

Robb,

All this makes a lot of sense, thanks so much for your reply!

I just have a couple of questions if you don't mind me asking, I don't want to take up too much of your time :)

1) I try to rotate what I am eating everyday because of my multiple food allergy/intolerance issues, is that a problem or is it better to do what you suggest, rotating the protein sources from week to week? Typically I have turkey as the protein for lunch but I rotate dinner between chicken, beef, and I am attempting to add in salmon as well. Eggs are out for now.

2) Do beets, winter squashes (spagetti, acorn, etc), or red skinned potatoes have the same properties as yams, sweet potatoes? What about legumes? I can eat yams and sweet potatoes, sometimes I have a half of one for dinner, but I would need to rotate it with possibly the things I listed here, or other low starch substitutes. If I had 3 or 4 starchy veggie options to rotate with my protein that would be great for my food allergy/intolerance issue.

3) Nuts (or seeds) don't seem to be my friend, especially almonds and peanuts. I showed throught the roof allergic to these 2 on my Igg Ige blood tests. Aren't nuts and seeds in general hard on a compromised digestion system? Since I took eggs out of my diet recently I have substituted them with fruit for breakfast, it would be nice if I could have a few nuts along with the fruit. I've been doing really well with melons so far btw.

4) How high of a risk is diabetes and/or breast cancer for me given I have already developed skin tags?

Thanks again for your expertise and time!!

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Thanks for your input Robb. We're finding our way through this quagmire. My husband was put on three series of antibiotics and then prednisone when he got sick with the autoimmune disease so I think that's where he initially got the yeast which is in his lungs. I understand that he has to follow some type of candida diet but it's hard to get him to make dietary changes going gluten free was hard enough. He's currently on Diflucan but I'd like him to take something less toxic. Finding out he was gluten sensitive and killing the yeast have been big steps in his recovery.

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Robb, thanks for your advice. I appreciate your time. I plan to follow your suggestions. What is RA? and my thigh muscle biopsy showed that I had many, many small muscle fibers and there were a few denervated nerves in the sample. Do I need to do different exercises/diet based on the information presented from the biopsy? Tara

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Robb,

All this makes a lot of sense, thanks so much for your reply!

I just have a couple of questions if you don't mind me asking, I don't want to take up too much of your time :)

1) I try to rotate what I am eating everyday because of my multiple food allergy/intolerance issues, is that a problem or is it better to do what you suggest, rotating the protein sources from week to week? Typically I have turkey as the protein for lunch but I rotate dinner between chicken, beef, and I am attempting to add in salmon as well. Eggs are out for now.

2) Do beets, winter squashes (spagetti, acorn, etc), or red skinned potatoes have the same properties as yams, sweet potatoes? What about legumes? I can eat yams and sweet potatoes, sometimes I have a half of one for dinner, but I would need to rotate it with possibly the things I listed here, or other low starch substitutes. If I had 3 or 4 starchy veggie options to rotate with my protein that would be great for my food allergy/intolerance issue.

3) Nuts (or seeds) don't seem to be my friend, especially almonds and peanuts. I showed throught the roof allergic to these 2 on my Igg Ige blood tests. Aren't nuts and seeds in general hard on a compromised digestion system? Since I took eggs out of my diet recently I have substituted them with fruit for breakfast, it would be nice if I could have a few nuts along with the fruit. I've been doing really well with melons so far btw.

4) How high of a risk is diabetes and/or breast cancer for me given I have already developed skin tags?

Thanks again for your expertise and time!!

Julie-

Here we go!

1)- Weekly rotation seems to minimize allergenic response. Ironically if one HAS an allergy only one exposure per week can keep antibodies at near maximum levels. It can certainly be a pain and get a bit monotonous but if one can stick to say chicken for a week, then shift to pork, then to beef...you will not see that main protein for quite some time. Be flexible! Don't get divorced, fired or alienated but give it a try for a month and see if the results are work the effort. That is ALWAYS the gold standard. How does it work for YOU? Theories are great but results are what matter.

2)Do beets, winter squashes (spagetti, acorn, etc), or red skinned potatoes have the same properties as yams, sweet potatoes? Those are all good foods from an allergy perspective but easy to overdo with regards to carb load. Try to get good amounts of vegetable matter to help blunt the insulin response. Legumes of all varieties are bad news IMO. Very high lectin load as with all the graminace (wheat, corn, rye oats etc). If one has an active autoimmune condition I'd be VERY wary of grains, legumes and dairy. This may not always be the way of things. As your immune system calms down and GI integrity improves you may be able to splurge with things like corn tortillas and other stuff. Just have to see about that!

3) You’re right, nuts and seeds can be very problematic. Coconut might be a good option. If you have a latex allergy bananas and avocadoes can be a problem. Again over time this should improve. Are you taking fish oil? This can be very helpful with inflammation and hyperactive allergy situations.

4)Cancer? No real way to know. Type 2 diabetes is (in my opinion) completely a disease of situation. Change your nutrition, exercise, sleep and you will not have type 2 diabetes. Not a popular position with the AMA and drug companies as a clean active lifestyle doe not sell glucophage and other drugs to manage these diseases. Related to the cancer: decrease your pre-diabetic symptoms and you will decrease your cancer risk.

I'd recommend a few books:

Lights Out: Sleep, Sugar and Survival

Sex, Lies and Menopause (One need be no where near menopause to benefit from this book...highly controversial but super important)

Omega Rx Zone

Protein Power: Life Plan (make sure to get the life plan version as an older PP book exists)

All of these are available through Amazon for like $2 per book. Some of the specifics differ from book to book but the main message of managing insulin, allergenic foods and immune function gone awry are consistent throughout. Let me know how it goes or if you have other questions.

Thanks for your input Robb. We're finding our way through this quagmire. My husband was put on three series of antibiotics and then prednisone when he got sick with the autoimmune disease so I think that's where he initially got the yeast which is in his lungs. I understand that he has to follow some type of candida diet but it's hard to get him to make dietary changes going gluten free was hard enough. He's currently on Diflucan but I'd like him to take something less toxic. Finding out he was gluten sensitive and killing the yeast have been big steps in his recovery.

That is some serious stuff you are contending with. I'm guessing he has an aspergillis infection obtained from his hospital stay? This stuff can be really tough...food serves so many purposes beyond just physical nourishment...just encourage him to eat clean, protein and veggies at every meal. Good fats etc. Even if it’s approached as a short-term intervention to help his condition perhaps that could be more appealing to him. Hang in there! You guys can do it

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Robb, you mentioned glutamine in one of your posts - I have a question in another post on "energy drinks", but thought you might be able to help me. I was wondering if the new energy drink XS, which contains L glutamine and a bunch of B vitamins, would be good for a celiac to drink, or harmful. My boss (non-celiac and a runner) drinks these every day and gave me one today b/c off all the B vitamins. At first I though the glutamine in it would be bad, but then I saw some mentions of glutamine supplements for healing your intestines, so now I'm wondering if these energy drinks would be good for a newly diagnosed celiac to drink (I wouldn't drink them all the time - too expensive!). Any thoughts?

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
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