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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

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  1. I did Ideal Protein 2 years ago and (surprise!) got pregnant with my second child. Now that he's weaned, I want to do it again. They have Gluten Free options and I have ~ 50 lbs to lose. The weight has started coming back on after my diagnosis a few months ago, so I need to do something to get it under control. I've been eating 'whole, real foods' but the weight is not coming off. I want it off for more than cosmetic reasons. So, that being said, any Celiacs here have success with Ideal Protein? A woman I met yesterday did it Gluten Free is at her goal weight, but she's not Celiac, but NCGS. Pitfalls? Concerns? Really any thoughts at all are welcome.  I have Type 1 diabetes too, but that's so old hat to me now...and I obviously had it 2 years ago when I did IP before. I lost 20 lbs then. Just not sure what to expect when adding my fancy new disease. My goal for after the weight coming off is to of course stay 100% gluten-free, but also to lean more towards a paleo lifestyle. I'm dragging my whole family along at the adventure. I'd rather my kids not eat chicken nuggets more than 1-2x a month. If you catch my drift.
  2. Hey everybody, so I have a friend (female, 20 years old) who has NOT been diagnosed with celiac and does not think she is allergic to wheat but is having severe tummy issues. symptoms and factors: shooting stomach pain immediately after eating anything nausea and pain for almost 40 minutes after eating unintentional weight loss (30 pounds in 1 month) high stress environment on medicine from doctor (to coat her stomach throughout the day) long term, 8 months... Whenever she eats anything, for almost 8 months now, she experiences nauseating shooting pains that go through her stomach immediately whenever she eats anything. Her doctor put her on a medicine that coats her stomach throughout the day, so she takes it every morning before she eats, and it is the only way she is currenty able to eat. Since this began she unintentionally lost 30 pounds in a month and continues to loose weight. She is in college and taking many hard classes so stress could be a factor. She has not had a scope to look at her stomach to check for ulcers because she can't afford it right now. I got her to start trying kefir and see if that helps. Does anyone have any ideas or suggestions!? It would be super appreciated, any imput is really awesome! Thank you!!!!
  3. I was diagnosed with Celiac Disease 3 weeks ago. I am amazed as numerous symptoms that I didn't know I had are vanishing (post nasal drip, fatigue, joint pain, muscle weakness, de-yellowing in nail beds, etc.).   After cutting out gluten 100% including in body care and cleaning products, I am noticing that it's much easier for me to gain and sustain muscle, and that my muscle mass is double what it was. I lift weights and do yoga for health (am not a body builder). 6 months ago I had to stop yoga because I could barely get into downward dog without feeling my blood pressure shoot up, so needless to say weight lifting was out too. I couldn't even pick up a 15 pound weight to move it while cleaning the floor.   Has anyone else experienced this miraculous change? I easily see 2X the muscle gain that I did when I was lifting at my heaviest a year ago.
  4. I went gluten-free over nine years ago. I was always thin - 5'9" and roughly a size eight. After years of chronic pain and mood issues and insomnia a doc caught the celiac. Soon after quitting gluten all symptoms subsided but I quickly gained A LOT of weight. It's been many years, many docs and MANY different diets. I can't lose the weight. I've tried every variation of diets and it doesn't budge. I exercise regularly and eat a fraction of what others eat. I'm so tired of people telling me "calorie in calorie out." It's BS! I've seen tons of docs, most of which don't believe my diet log. I did crossfit for five years. The more paleo I ate and the harder I exercised the more with I gained. Doc told me I blew my adrenals so I stopped and stuck to walking for eight months. I recently took up yoga and I'm gaining again. I like to about about 90% paleo, organic with minimal red meat. I also don't eat soy and I never drink coffee. My thyroid tests are normal and I've tried all the thyroid meds and they don't do anything. I'm about 40 lbs over weight and SOOOOO tired of it. I'm covered in a very fatty layer and look full of cellulite. I do supplements, cleanses, you name it. If I eat fruit, it's low glycemic. I only eat minimal nuts to avoid calories.    It just doesn't add up. I'm pretty sure, whatever anyone suggests, I've tried it. I've seen the best docs in the area and they are baffled. I have high insulin but I'm not prediabetc. I have gorgeous blood work - It appears I'm very healthy. I've monitored my blood glucose and... normal. My A1C is 4.6! I have a team of naturopaths and no one can figure it out!   Anyone else have this problem!?!?  I'm fat as hell and I shouldn't be. If anyone wants to tell me I don't eat enough... I tried that route too (more food, more frequently to boost metabolism - nothing).   IDEAS!?!?!?!?!?!?
  5. Lost

    I'm at a loss.  I still haven't been feeling well and it's been over a year since my diagnosis.  I have recently gotten new doctors, moved to a different hospital, so I had all my yearly labs drawn from a new doctor.  My vitamin levels are all normal, barely, but normal.  My antibody levels have flat out stalled since I had them drawn in August.  They haven't gone down or up.  My new GI seems to think I'm some how getting glutened.  My daughter and I eat all the same foods, use all the same products and her antibodies are completely normal, the only thing different is I take Thyroid medication which I have called on and am told it's gluten free.  I never go out to eat, barely eat anywhere but home.  I don't feel like I'm getting glutened, even low level cc usually makes me get headaches, brain fog, the whole gamut.  Have I just not given it enough time?  I'm still losing weight, not nearly as fast as I was before, but still losing it.  My energy levels are next to nothing ( TSH is normal) and I'm dizzy all the time, fainting a few times a week.  My boyfriend and I have been over our house multiple times and find nothing.  I guess I'm just lost on where to even start looking.
  6. Hello all,   I have been suffering for some time now and just learned I am severly malnourished and have Celiac Disease (confirmed Monday).   The GI specialist said (in from of my boyfriend who has now become a mental basket case) that this is a last-ditch effort treament. He expects 100% cooperation YET I still haven't seen a dietician (only a student who is studying to be one when she grows up). He has given me a supplement plan including a peg for home IV but I- don't know yet how much of that is covered.   Any way, I have a medical app that allows me to set the number of carbs, protein, fats and SO much as my goals so I can measure them when my blood tests come back.   Does anyone know of a place to help figure these goals?   Thank you, Laurie
  7. I'm 18 weeks pregnant (19 weeks tomorrow). I've been on a gluten-free diet for nearly 2 years, and last year I found out I was also sensitive to dairy, corn, and several grains (tapioca, teff, millet). I also have Hashimoto's but I'm on medication and my antibodies have gone way down since going off of the foods I'm sensitive to. I'm 5'1" and right now I weigh 103.5 lbs. I weighed 100 before I got pregnant and I gained 3 pounds in the first few weeks of pregnancy, but then had horrible morning sickness for about 3 months straight, causing me to drop down to about 95 lbs. Then I got hit with a stomach virus about a month ago which caused me to drop again down to 92 lbs.    So I'm glad I've finally passed 100 again, but I am just not gaining much weight at all--maybe 1 pound every two weeks. The thing is, I have been eating like CRAZY. According to a calculator I used, I need to be eating at least 2500 calories a day to gain a pound a week. I'm eating over 3000, literally stuffing my face all day, and I hardly notice a difference. The baby is healthy and growing quickly, but I'm not! Any advice for me?    If anyone's wondering, my typical diet consists mostly of meat, fish, seafood, eggs, quinoa, rice, lots of fruit and veggies, nuts (I have to be careful with nuts because they cause sinus congestion if I eat too many--I've already been tested for nut allergies and have none), seeds, smoothies, and occasional snacky foods like chips and chocolate. I've also been adding powdered gelatin to smoothies and soups for extra protein.    My midwife told me I really needed to gain 5 pounds in the next 2 weeks. Help! I've seriously never eaten this much before in my life!
  8. i have been having trouble gaining weight, or keeping weight on.  maybe someone has suggested this before, but there is an app i got for my phone that is called 'my fitness pal' - it's free (yay) turns out, i felt like i was eating a ton of food and not gaining but this thing calculated my recommended calorie intake based on what i weighed, how tall, etc and how much weight i wanted to put on.  i am still not to my goal, but have gained 6-7 lbs since then end of august.  and it's staying on :  my pants are fitting!  yayyyy!!!   anyways, this thing will even scan a barcode and tell you serving size and calories.  you can double the portion or cut it into whatever you want.  it stores the things you eat every day/on a regular basis and it will multi-add ie;  i eat cereal with banana for breakfast (alot, evidently lolz) and it comes up as a list.  i click multi-add, check boxes for cereal, banana, milk POW added quickly.    *disclaimer! - i do not work for this company nor am i affiliated with any of it's owners.  i can barely work my phone    hahaha   ps - my son saw this app on my phone and cringed("oh, mom, you're not counting calories, are you?!"  i said i'm kind of doing it backwards....), so i guess 'fitness' people use it and i'm guessing it's handy if you're trying to lose, as well.  he has the 'betus (diabetes type 1) and uses it to track his carbs/calories   this would also work as a handy food journal if you're on the go     
  9. Hi all I am currently managing a gluten free diet and weight loss and am enjoying protein shakes in the mornings to kick start my metabolism. A while ago I had found a recipe to make low calorie chocolate cookies out of the protein shake mixture and they were delicious and a good low calorie treat. I am currently loving my strawberry flavored protein shake and am wondering if anyone has any recipes for low calorie desserts that can be made with the strawberry flavoring? Recipes for other flavors are also most welcome. A word of caution to those that are new to protein shakes you have to be careful to check ingredients as a lot are not gluten free. Thanks all for your contributions. I am loving reading the wealth of knowledge in the forums and have only recently signed up.
  10. I have a 19 month old son that I am suspecting may have Celiac. He is very small. He is 19lbs and only 27" tall. He has been sick since the day he was born. He is constantly constipated and vomits almost daily. He also has chronic respiratory infections. As of about 4 months ago, I started seeing these small liquid filled sacs in his stools. They are comparatively about the size of a grain of rice. The will pop if you squeeze them and a clearish yellow liquid will come out. I have had him tested for parasites and it came back negative. My son has always had issues with constipation and gas. His stomach stays big and swollen. We have an appointment at Texas Children's with a GI next month, I am just trying to narrow down things I can bring up to the doctor. When looking at the symptoms of Celiac's everything seemed to click. Right down to his asthma and size issues. When I asked his pediatrician about the sacs in his stool he was at a loss and could not even begin to make a guess. I myself also have had a diagnosis of IBS with bad episodes of constipation and diarrhea. Celiac is the first thing in my mind and I am kind of just wondering if these things sound like this may be the answer to our problems? Any help would be extremely helpful and appreciated.
  11. I was wondering if anyone else has lost massive amounts of weight ( I have lost >150 pounds) pre-diagnosis and wondering how you deal with all the extra flabby skin?  I know weight lifting will help with my arms, but my legs and belly have some hanging skin and stretch marks.  Any help would be appreciated.  Thanks
  12. I have been wheat free since December.  The main reason I made the shift in my diet was because I read Wheat Belly.  I have noticed great changes with my health.  I sleep better, have more energy, digestion is much better, skin looks better, and I overall FEEL better.  The one thing that I have not noticed is the weight loss.  I have not lost 1 pound.  Now, I know what you are thinking "this guy is obviously replacing the carbs with carbs".  The truth is, I eat the best I have ever eaten in my life.  I don't eat processed foods, chips, or sweets.  I have a Nutribullet smoothie every morning, eat nuts and seeds, lots of fruits and veggies... I still have not lost 1 pound... I have eliminated GMO foods... still not 1 pound...   This is very odd for myself as before I was very yoyo.  I would gain and then with little effort, I would lose.    I am wondering if any of you have any suggestions or similar problems.  Is there something that I am not being told or should I just stick it out and expect it to fall off shortly?
  13. I just had blood tests showing positive for Celiac disease and am awaiting an appointment with the gastroenterologist.  Since I had my child (2.5 yo) I have not been able to lose any weight whatsoever no matter what diet plan (though hadn't tried gluten free before).  Before I was told i had to continue eating gluten until my biopsy I gave it up for two days and had lost 4 pounds!  I'm wondering if there are many out there who were obese and lost weight successfully after they went gluten free?  I don't want to gain more weight like I see some people have done as I'm already way to overweight and have been since i was a child.........   Also, if you have lost weight (and needed to!) after going gluten free...any advice??? Thanks!
  14. Weight Gain After Recovering

    Its been nearly 4 years since I went off of gluten.  Last year in January I suddenly put on 15 lbs in about two weeks. That might not seem like much, but I could never put on weight and always looked gaunt and sickly from the time I was a child.  I've been working out, eating well, and haven't been poisoned too often lately, and yet this extra weight still remains a year and a half later, not growing, not shrinking.    I have a theory that maybe I've healed to the point where finally my body can absorb nutrients and fats again and its adjusted me to a proper healthy weight.  My doctor thinks the stubborn weight gain is from a thyroid issue, but I exhibit no other symptoms of such a thing.    If anyone has had a similar experience after being off of gluten for a few years I'd love to hear about it! 
  15. I had my first prenatal with my OB (others have been with my reg. doc) and my doctor was a wee bit concerned with my weight gain. I've only gained 1 lb (in total and I was wearing my boots etc. so I don't know if I have even gained that).   I explained how my thyroid has been regulated recently, I've cut out gluten and that I eat the same if not more than my husband on a daily basis (who was there for a visual) - he's 6'1 and about 220). I also said that my regular doctor said my pre-pregnancy weight was likely higher than it should've been naturally and that is why I haven't gained much as my body was sorting itself out.   He said it's all well and good but that I should be gaining a pound a week going forward. I feel like other than having a food funnel that I can't physically eat more than I do currently!   Has anyone else experienced this and have suggestions about what to add to my diet? Here's my norm foods:   Quinoa, rice, rice pasta, avacado, nuts, yogurt, meat, eggs ,fruit, and veggies with a side of ice cream/cheese. I am sensitive to dairy so I can only have one serving or so a day.
  16. I'm wondering if anyone out there has an understanding of weight loss when it comes to gluten intolerance.  I'm still trying to figure out if GI or Celiac is my problem.  (Or maybe it's time for me to wave the white flag and go get some antidepressants.)   In the last two months I have lost 20 pounds.  It's true, I've been through a big life trauma (my son passed away).  But I have continued to eat, eat, eat.  In fact, I've been keeping a log, just to prove to my doctors that I am, indeed, eating at least 2000-2500 calories a day.    I am very constipated, and so I do NOT have diarrhea and there is no fat in my stool.  So, if I'm still eating about the same amount of calories, and do not have diarrhea, then how can I be losing weight?   So the question is... where does the food go, if not as weight onto my body?  In other words, do Celiac's lose weight only because they have diarrhea?  Can there be other ways to lose weight?  I'm just baffled...   I did do quite a bit of cheating on my diet in January...    Thanks for any thoughts you all might have on this!    
  17. I was diagnosed 7 months ago at the age of 40 and I have gained 60 lbs. Little more complicated. I also was diagnosed with anorexia because I did not like food this is how they found out that I was celiac. I am eating more. Very diligent on the no gluten. Working on gluten in bandaids and make up and such now. But I am so frustrated and depressed about the weight. I have been added on iron for low iron, I have been put on a multi due to low nutrients, I have been put on vit d 5000 a day, I have been put on fiber and a stool softener because I am constipated all day. They have checked me for my thyroid it is just fine. They are now also checking my heart because I have developed an arrhythmia and either have signs of just had a small heart attach or on the verge of one. How long does it take a body to heal before I can start leveling off on the weight and feeling better. ANy thoughts. Oh I just had double food surgery in Feb. so the exercise has been a slow process but I move more than I did when I did not have the foot surgery.  
  18. Good morning everyone, My name is April and I was just diagnosed with celiac disease last Thursday! I was hoping to share my story and see if anyone else out there is like me and can offer me any "what to expect" advice. Thank you all in advance. In a nutshell these were the weird symptoms I was experiencing: 1. Unexplained weight gain despite diet and exercise 2. Bone pain that progressed (I was scared of cancer) 3. Inability to sleep through the night or feel rested 4. EXTREME fatigue, all the time, no matter how much rest I got or caffeine I consumed   Surprisingly I have absolutely NO GI symptoms when I ingest gluten. It never affected my GI tract which is why it took so long to track down I guess.      I have always been a very thin person until the past 2-3 years after my dad died suddenly (a lot of my family kicked the bucket in a matter of a year) and I started to gain weight presumably from stress. Of course I thought this was from depression so over the past year and a half I have spent my time feverishly working out (Insanity, P90X, Turbo Jam, personal trainer, kettle bells, you name it!) and actually gained weight and inches much to my chagrin. I went back and forth to my doctor whining about how I am getting fat (I gained 35 lbs in a year and a half despite proper diet and exercise) only to be told I am eating too much and told to cut my calories down to 1100 a day (yeah right)(I currently weigh 140 lbs am 5'0" and going to be 30 later this month yikes!!). So a friend referred me to a lovely holistic medicine doctor who did a plethora of tests on me (ironically that I had begged my normal practitioner to do which she refused) and found that I have celiac disease (homozygous for all 4 genes) and am SEVERELY malnourished. Functionally I am starving to death she said. There was barely a measurable trace of vitamin D in my blood (29 and low normal is 75), I only had slight traces of biotin and one other B vitamin that I can't remember, all the rest were MIA and the same went with my amino acids, out of 26 essential amino acids I only had traces of 3 in my body. Alas she told me this was due to malabsorption and the more I worked out the more my body stored fat as it thought I was starving and the increased calorie burn made my body freak out even more when I was working out 90 minutes a day. This made sense to me until I read that most celiacs actually can't gain weight which is the exact opposite of me.    I am interested to hear other experiences to know what I may expect and if I am "normal" so to say. I am excited to have answers but am still scared as I am still gaining a ton of weight although I don't eat much and am very active. Thank you!!
  19. I would like to hear from Celiacs with Chronic Kidney Disease. Recently there has been more research of a correlation between the two. I was recently diagnosed. I have been able to find a little information on a combined renal and gluten free diet. What I have not discovered yet is the comparison of gluten free flours and wheat flour in terms of phosphorus content levels.   Here is a synopsis of my sudden diagnosis. I hope it helps someone else, as well as finding someone to support me.   About a year ago the night sweats unrelated to menopause started, I began to notice an extremely dry mouth (worse than ever before) and as time went on I had a constant bad taste in my mouth. Additionally I noticed my blood pressure levels became erratic. I reported all of this to my three specialists and one primary doctor, the last of which was doing a CBC every three months. In September my primary care referred me to a nephrologist due to abnormal creatinine levels in my blood, although my urine had no negative test results. Days after I met the nephrologist he put me in the hospital with a diagnosis of Stage 5 (End Stage) Renal Failure. When I left a week later they had gotten it down to Stage 4. Since then I've had a kidney biopsy. My kidneys are permanently damaged due to scarring with 50% functioning. There is no known reason for this. Tests prior to January of 2013 showed no creatinine disfunction. My nephrologist told me there is growing research showing a correlation between Chronic Kidney Disease and Celiac Disease. Given my situation, I suggest you have your creatinine levels tested and GFR calculated. Request that you be followed carefully and frequently if your creatinine is lower than 95. 11 months ago mine was 90 and my physician did not note it until it dropped to 40. I don't know if he or I had known this sooner my kidney disease perhaps would not be at Stage 4 now. This means I must go on dialysis and will need a transplant eventually.
  20. Hello everyone, (Warning: Extremely Long Post!) I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test. Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010. The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it. I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day. My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight. My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014. IgA     188     (Normal is 80-340)  So that is normal. TTG-IgA     <1.2     (Normal is 0.0-3.9)  So that is normal too. I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions? There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much! ~ Thursday
  21. So...   As many of you know, I have been practically primal for over three months now. it does help a lot with my tummy, especially since I have limited my intake to 3 brazil nuts per day.   90% of what I eat is whole foods; the 10% of foods including human intervention are: milk and yogurt, coconut bread, sometimes two tablespoons of organic fruit spread (unsweetened) at breakfast, and, increasingly rarely because I've had reactions to it, very very dark chocolate. I only drink water, coffee, and tea; rarely enjoy a glass of wine if dining out (read: no more than twice per month).   I exercise 6 days a week (sometimes 7, or on the 7th day I walk a lot) for 90-120 minutes: usually half medium-high impact cardio, and half strength training; I rotate activities - dancing, bootcamping, running, etc.   I am hyperthyroid - or so I was in January. I have all antibodies for both Grave's and Hashimoto. My FT3 and FT4 were through the roof. I am getting treatment trying not to suppress my thyroid function because I have seen lots of "suppress and replace cases" around me which did. not. go. well. Many symptoms are disappearing. Insomnia, especially, is mostly gone. My period is back - sorry for TMI - after being in menopause for a year and a half (I am 30) following being underweight due to thyrotoxic crisis in 2011.   Now I am 30 lbs overweight, and no matter how hard I try I do not lose weight, but pounds keep creeping up. I gained 15 in a week in July 2012. I was hypERthyroid then. Then I gained 8 lbs in a month in October, soon after going gluten-free. I was still hypERthyroid. Then I gained 7 lbs in the past few months, while being primal/low-carb/calorie counting. AND *very* hypER.   My joints hurt from excess weight. I cannot move properly and I used to be a ballet bun. Lots of this is water weight - I have hypoalbulinemia. My cortisol levels are below range, so that's not what's making me fat.   What is going on with me? It is not just frustrating that no matter what I do my weight goes up and up, it is also scary, because no one seems to have neither an explanation nor a solution. :( :(   I want to cry
  22. Just started lifting weights to try and attack some fat I put on after going gluten-free 6 months ago, and it feels great! No longer am I dying everytime I have to lift something or hit the tread-mill. Just wanted to share a positive experience here, and maybe listen to any workout tips from the in-shape Celiacs. Thanks, Life is Good
  23. Hi everyone,   This is the first time I've made a post to a forum like this. Similar to most people posting on these boards I've suffered from undiagnosable and chronic ailments that have severely damaged my quality of life. My main symptoms are neurological but I have reason to believe the root problem is dietary.   My mother recently had a bout with Breast cancer. She is in remission now, but the experience has made me want to make the most of my life. I have decided that it isn't enough to just trudge through life going through the motions. I want things to be easy for me like they seem to be for everyone else. I don't want getting out of bed in the morning to be a Herculean accomplishment anymore. I just want a chance, a fair chance to compete out in the world. I feel like I wasn't made for the world that I live in. I want to have a career and a family, but I fear without getting my health under control I won't be able to. It would be vert helpful if anyone said that my symptoms even sound familiar to them. I have been to doctor after doctor and very few have made any comments beyond "I dont know".   Basic history:   gender: female height: 5'7" weight: 113 lbs BMI: 17.7 Age: 23   Main symptoms:   1. Traumatic birth: I was born about a week late at 11 lbs 4 ounces, a very large baby delivered naturally through a very traumatic birth (forceps were used). Within hours of my mother first holding me in her arms she noticed me moving oddly, as if I was shivering from the cold. This shivering can be seen on home video footage.   2. Involuntary movements and tics: My entire childhood I suffered from severe tics and involuntary movements. I could not sit still for the life of me. I mean I could barely sit for ten minutes to watch a cartoon, and when the commercials came on I would leap from my seat and run around the house in circles. As I got older I got better at holding my tics in, and I would come home from school after a day of holding all that excess energy in and release it by literally sprinting up and down the stairs in my house for hours at a time with little relief.    3. Chronic fatigue: When I was 8 my grandmother passed away. Around that same time I felt that my tics had worsened, and I began to develop severe fatigue. The level of fatigue I reached is almost indescribable. A healthy person would only be able to reach that level of exhaustion after years of physical torture, and I say that understanding the full weight of that statement. I always thought that it was a coincidence that my health deteriorated so rapidly after my grandmother's death, but after reading that emotional upheaval can trigger dietary responses I'm not so sure anymore.    4. Persisting chronic fatigue: I maintained that level of fatigue until I was a freshman in high school. The years between age 8 and age 15 were the worst of my life. I completely lost these years. I was so tired sometimes that I felt like I was hallucinating, and I would intentional hurt myself to know whether I was awake or asleep. It felt like no matter how much I slept nothing changed the way I felt.   5. Diagnosed with Akathisia at age 15: Akathisia is a term for a chronic inability to be still and a feeling of inner restlessness. There is always a precursor for this disorder such as heavy drug use or brain damage, both of which do not apply to me. It's been explained to me that my neurological problems come from deep within the brain. The traumatic birth I experienced would not have been sufficient to cause Akathisia. I would've had to have brain damage to the point that I would not be a functioning human being. However, I was medicated with Clonodine which helped me enormously. This calmed the excess electrical energy in my brain and allowed me to sleep better and get my tics under control.   6. Persisting fatigue and low body weight: After being medicated with Clonodine it was like I was being freed from a prison. I was still tired and not able to function as well as my peers, but anything was better than what I had been living with. The euphoria from making some progress on my health problems was enough to keep my concerns at bay for about 5 years.    7. Pelvic floor dysfunction: After about 3 years of searching I diagnosed myself with Pelvic Floor Dysfunction. Intercourse is excruciatingly painful for me. This is because the muscles and ligaments of my lower abdomen have been inflamed to the point where they are tense and immoveable. Physical therapy has helped me a lot with this however my progress is slow and quick to reverse if I don't keep up with it, $200 a week for physical therapy and 20 minutes of exercise a day. I am so thankful I have the resources to pay for my doctors visits, but for someone like me who is working a full time job (and who has the added full time job of managing my various illnesses) that is really hard for me to keep up with. I certainly have some source of inflammation in my abdomen, I believe it's leaky gut.   8. Low weight: I am very skinny and always have been despite caloric intake or lifestyle. I've been told since I was 6 years old that I was shockingly skinny. Strangers feel compelled to comment on my weight and ask if I'm sick. Teachers and coaches pulled my aside in school to ask me if I had a problem with eating. At every turn my whole life people have iterated to me that I look sickly, pale, and anorexic. I managed to get my BMI into the normal range my senior year of college (yay, haha) by eating 8,000 calories a day, being completely sedentary, and with the help of an illegal appetite stimulant   9. Sinus infections and bronchitis: I would estimate prior to being medicated with Clonodine I got a sinus infection about once every six weeks and bronchitis twice a winter. After being medicated those numbers have about been cut in half.   10. Alcohol intolerance: I have never tolerated alcohol well but as I have got older its gotten worse. I used to simply turn a deep shade of purple when I drank, now I get nauseous and vomit almost every time I drink.    11. Insomnia: I have always had troubles with sleeping, however I am at the point where I cannot sleep without deadening my nervous system. My body only sleeps when I take something that addresses the excess neurological activity in my brain with marijuana, klonopin, opiates, alcohol, etc. I can take heavy doses of sleep medication and not be able to sleep.    12. Indigestion and diarrhea: I have diarrhea about four to five times a day and am always very gassy. I have gas pains sometimes that are so intense that it takes my breath away and I jump out of my seat in pain.    13. Poor concentration and OCD: I can't concentrate on anything very well and I have obsessive racing thoughts constantly.    14. Confusion and cloudiness of the mind: I constantly mess up what I mean to say. I often swap words within the same sentence. I often only say parts of sentences (ex: I meant to say "Where is he from?" but I end up saying "Where is he?"). I have identified this as a problem, however my family is reluctant to confirm this for me because they don't want to make me feel bad I think (more ridiculousness to deal with, although it comes from a good place). I will ask my mother if she notices me doing this and she'll say "that happens to everyone". But when I have a particularly bad moment of faltering with my words I'll ask my mother later what she thought about that incident and she'll respond by saying "I just said to myself you were having a bad day". (Confusion all around! Haha. I'm confused about whether or not I am confused, you gotta laugh at it sometimes!)   CONCLUSION:   If you've gotten to this point, thank you from the bottom of my heart for taking the time out of your day to try to understand whats wrong with me and offer guidance or helpful advice. It would be nice for someone to even say that they've been in my position. I've always assumed that I was the only human being on the planet walking around with a mysterious disorder called "Generalized Akathisia", but maybe I'm not and maybe theres something more that can be done to help me. At this point my family and close friends think that stress is causing the bulk of my problems, like I'm crazy and imagining this entire thing. I do think that stress plays a major role because every time my symptoms have worsened and health has deteriorated further this has been accompanied by a major stressor. But shouldn't I be able to handle stress the way everyone else does? Breaking up with a boyfriend and taking care of your sick mother are normal parts of life. What am I supposed to do? Move to a farm with no electricity and cut myself off from the world?    ps: just ordered tests from Entero Lab, sample will be sent next week.    Thoughts? Comments? Doctor recommendations in the Greater New York area? 
  24. Hello!   I am 26 years old, 5'6'', and 160 pounds. I was diagnosed as a Celiac 2-3 months ago via blood test AND endoscopy.    I have been gluten free for about 2 months now - and I cannot stop gaining weight!    I've read many posts on this site telling people to watch out for the gluten-free substitutes for bread, pasta, etc. Well - I don't eat those except maybe once or twice a week for one meal that day even.    I eat very clean - this is what I ate today: (hopefully you can see it)   Breakfast   Fage - All Natural Nonfat Greek Strained Yogurt, Total 0%, 0.33 cup (227g) Bob Mills - Chia Seeds, 13 g (1 Tbsp) Fruit - Nectarine - Large, 1 Large Nectarine 365 - Walnuts Chopped, 1 oz   Mid Morning Meal   Blackberries - Raw - Blackberries, 0.5 cup (250 ml) Driscolls Raspberries - Raw (Net Carbs), 0.5 cup   Lunch   Tyson Chicken Breast - Shredded Skinless Boneless, 8 oz Aldi - Roma Tomato, 1 tomato   Mid Day Meal   Acient Harvest - Quinoa Rotelle, 2 oz. (57g) Kraft - Reduced Fat Parmesean Grated Cheese, 2 tsp. Intek - Vanilla Protein Powder, 1 SCOOP   Dinner   Tyson Chicken Breast - Shredded Skinless Boneless, 4 oz Belfonte - Nonfat Sour Cream, 2 Tbsp Cilantro - Chopped, 0.1 cup Tillamook - Special Reserve - Extra Sharp Cheddar Cheese, 0.5 oz. Berkley & Jensen - Broccoli Florets, 1 cup (85g)   Total Calories and Macros for the day:   1484 Calories 95 grams carbs 50 grams fat 156 grams protein 25 grams fiber     I eat very clean (above is a typical day) - I love veggies, clean proteins, and love to cook my own meals from scratch.    I have gained 10-15 pounds in the last two months. Exercising 3-4 times a week (weights) and a very active weekend chasing after my nephews.    I have no idea what is going on!   HELP!   Alex
  25. I started a gluten free diet in January and am now finally at the point where I don't keep accidentally eating gluten. I haven't had an accidental glutening in almost 2 months now which is the longest time span without an accidental glutening since January. I cut out all processed food and try to eat a lot of healthy fats and proteins to keep the weight on but it's not working. I was already under weight before the gluten free diet and now I keep losing more weight. I'm starting to look sickly/skeletal and anorexic looking, and I don't know what to do to keep the weight on   When I eat too much fat it's almost as if my body is like "well I'm just not going to digest all this fat, sorry" and it doesn't do anything except potentially give me upset stomach. I recently found out I can't eat potatoes or brown rice either because it aggravates my leaky gut and makes me sick.  Am I doing something wrong? I can't keep losing weight like this. I look horrible.  Please help.