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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. Hello everyone, I'm new to the site. Can anyone shed some light on a.) why I am not gaining any weight? I'm 5'6 and weigh 90lbs and still loosing. This is what I eat in a day. 4 sweet potatoes with cooked veggies for breakfast. 4 sweet potatoes with cooked veggies for supper. Snacks a cucumber or an apple. Drinks: water. The potatoes and veggies are nutrient dense and the former aid weight gain. This has been my diet for about 3 weeks but I am still loosing weight and fast. I also keep getting crazy heart palpitations. What could I be doing wrong? b.) Does anyone know if Celiacs can consume potatoes? I heard Celiac's should avoid potatoes because they can feed the overgrowth of bad bacteria in the gut but I find them so soothing to my stomach. c.) Also my haemoglobin is at 7.3. Range is 12-14. I have been taking iron tonic but I am getting chest pains and heart palpitations. I had a dream that something was applying a lot of pressure on my chest this night. Don't know if that was taking place in real life while I was asleep and then came up in my dream. Should I be concerned? I recently did a PET Scan of my heart and ultrasound and both results came back fine. So I don't know what's going on with the heart. d.) Lastly I am so weak despite going off gluten and playing it very safe with my foods as you can see from my diet above. What am I doing wrong? Should I go for drips? Is there a particular weight where I would need to be hospitalized? Your advise/tips on how to stop further weight loss and weakness would be welcome. Thank you.
  3. Hello folks. I don't really know what to say, really. My anxiety is really up and down and I just feel a little ... Lost at the minute. Well, here goes. I should be almost 2 months gluten free but I'm not, as a rice drink I was drinking was glutening me. Yeah, that annoyed me and messed me up a but. Well, lesson learned. I'm coming up to just over two weeks gluten free but since being "gluten light," and now completely free, the weight just keeps coming off and its a bit concerning (although it does seem like its tapering off.) I only eat whole foods now that I prepare myself as I have a lot of other intolerances - the usual suspects soy/egg/diary/corn - I also cannot handle fat well. I have seen some improvement, my BM are no longer pale and floating although I still have constipation. My headaches seem to have also cleared, which is a plus. Still fighting the fatigue though. Up and down days it seems, and my pharmacy doesn't have any folic acid which I am low in without lactose! They offered me a liquid solution chocked full of parabens, not too keen on it if I'm honest. The things I'm worrying about is the weight loss, and lingering nausea which comes and goes, and often swings between nausea and being ravenously hungry. I know this is a journey, has anyone else had a similar experience to mine? Also my personal products are all safe. Oh I'm a dude by the way. 26 from the U.K Sorry for the ramble. Happy healing to everybody R
  4. 07/06/2017 - Each New Year you will find a plethora of articles on weight loss. Unfortunately, for those with celiac disease, weight loss is not always an issue, but for some the opposite is true. Though much false information in the medical community remains, such as "you must be underweight to have celiac disease", there are many who are overweight. Whether you want to gain or lose weight, they have one thing in common, the need for nutritious food, and food that does not cause inflammation in the body. If you look at autoimmune diseases, in general, you will notice they have one thing in common, inflammation. Celiac disease – inflammation of the small intestines; multiple sclerosis – inflammation of the central nervous system, Grave's disease – inflammation of the thyroid gland; arthritis – inflammation of the joint tissues and cartilage; Crohn's disease – inflammation of the digestive tract; Alzheimer's disease – inflammation of the brain; transverse myelitis – inflammation of the spinal cord; etc. When we consume foods that we are either allergic to or sensitive to, our white blood cells release toxic chemicals to fight off what it perceives as foreign bodies resulting in inflammation. If our bodies are too busy fighting off inflammation from a non-optimal diet or stress, they do not have enough resources to fight the real bad guys. Some of the foods known to fight or prevent inflammation are spices such as turmeric, curry, cinnamon, ginger, and garlic; tropical fruit such as coconut, pineapple (contains a natural antihistamine), and papaya; green tea; fish oil and fish; and a wide variety of colorful vegetables such as spinach, kale, broccoli, cauliflower, kelp, red peppers, sweet potatoes, and cabbage. Research shows that omega-3's are not only known to reduce inflammation, but it may lower the risk of chronic diseases such as arthritis, cancer and heart disease(1). Because our bodies cannot make omega-3 fatty acids we must obtain them from food or supplements. If your doctor has recommended that you take an omega-3 supplement or increase omega-3 in your diet, it is important that you know the two main types. Omega-3's which are marine-based (fish and fish oil) contain EPA and DHA, where the other contains ALA. ALA omega-3 may be obtained from soybean, canola, and flax seed oils, ground flax seed, and walnuts, as well as kale, spinach, Brussels sprouts, and leafy greens. Though our body does not make omega-3's, it does partially convert ALA to DHA and EPA. Per Harvard School of Public Health, we do not know which, if either, is more beneficial (2,3). Research does show that EPA and DHA do reduce the risk of heart disease in older adults.(4) When ALA is added to our diet it is known to reduce the risk of breast cancer and prostate cancer, as it helps your body metabolize estrogens into a safer form. You may already be aware of the fact that aloe vera contains a gel-like substance that is known to heal. (As a side note, aloe vera products sometimes contain laytex.) Flax seeds contain the same property. It is also high in omega-3, though yellow flax seeds are lower. Brown flax seeds have the most health benefits. Another popular superfood is chia seeds. It does not contain the same properties as flax, however, chia seeds provide similar benefits as flax, and they do not need to be ground in order to reap those benefits. Chia benefits include fiber, calcium, antioxidants, protein, and more. Fiber is known to make one feel full, however, both flax and chia seeds absorb quite a bit of liquid, creating the feeling of fullness for a longer period of time than many other fibers. This is a great and healthy way to lose weight. A misconception about losing weight is to skip meals. When you do this it throws your blood sugar levels out of whack. Some believe this results in weight gain, or at least in no loss. Minimally, it is unhealthy. What does make sense is that if you eat more often such as 4 – 5 times a day, and on a regular schedule, your blood sugar levels maintain balance and your body recognizes that it will receive more food soon, which may prevent it from going into a starvation mode, storing fat. The bottom line is always calorie intake, though. Choose wisely, and avoid the use of refined sugar and artificial sweeteners, as this increases acidity in the body, resulting in inflammation. When chronic inflammation is present in the body it depresses the immune system and creates disease, even tumors.(2) Inflammation really is the precursor to disease. For those with celiac disease needing to gain weight, note that it may take several months to up to a year before your gut is healed enough to absorb nutrients properly. Meanwhile, check the ingredients and foods that you consume to ensure they are truly gluten-free. Due to the lack of labeling laws in the U.S., a food labeled gluten-free may still contain a small amount of gluten. Consume a high calorie diet with healthy fats such as avocado,coconut oil, high calorie nuts such as walnuts and pecans, nut butters, and if dairy-tolerant, cream cheese. Add avocado to your sandwiches, healthy oil to protein shakes and smoothies; consume high carbohydrates such as potatoes; and snack between meals. Individuals who need to avoid dairy may find it difficult at times. There are a number of gluten-free, dairy-free substitutes on the market now. If you are soy and corn intolerant, as well, you may find it difficult to find a dairy-free substitute for butter. A small percentage of dairy intolerant individuals may tolerate goat's milk; and some even tolerate ghee (clarified butter). Because a minute amount of dairy protein may remain in ghee, and because goat's milk is considered dairy, it is best to be tested for food allergies if you suspect a dairy allergy, prior to consuming the above. Previous studies on food allergies focused on antibodies (proteins that attack foreign substances and sometimes even food) found in the blood. In a preliminary study performed by the University of Osio, Norway, it was discovered that food-related antibodies may end up in the gut. When the body mistakes a food for a foreign matter, it creates IgE antibodies (Immunoglobin E), which creates a chain reaction of symptoms. Though the study was performed on those with rheumatoid arthritis (RA), in the participants' intestinal fluid they found antibodies to the following foods: cow's milk, hen, cereal, eggs, codfish, and pork, at higher levels than in non-RA patients.(5) Similar results may be found in those with celiac disease or gluten intolerance, even the general population. We will not know until additional studies are performed. It is definitely food for thought. If you have any type of unexplained symptoms, that medical professionals have not been able to diagnose, consider being tested for other food intolerances or allergies, besides gluten. Consuming foods that cause your immune system to react will only create additional inflammation. There has been much talk that many individuals have had positive results from using Cyrex Labs. You cannot do these tests by mail, as someone must draw your blood. However Cyrex Labs has a list of doctors who will provide this service. If you are not quite sure what you are allergic or sensitive to, another option to consider is an allergy elimination diet. For one month eat only meat, fish, fruit, vegetables, basically a caveman diet, quite a bit stricter than the Paleo Diet. (Definitely check with your doctor first.) Then introduce one food at a time back into your diet. Note that food allergy reactions may be immediate or within a couple of days, where a sensitivity may take longer to show up.(6) This is also a great way to lose weight. If you are new to the gluten-free diet, make sure to introduce new foods, especially gluten free grains, one at the time. Consume the item a few times within a couple of days and wait for 2-4 days and take note whether you have a reaction to it. The reaction may be as complicated as hives, dermatitis herpetiformis, or digestive issues; or as simple as a bad night's sleep or slight bloating. Note that some people may not present any symptoms, even to gluten, and still have celiac disease. The above is referenced for food allergies and sensitivities only. The best advice for anyone who is gluten intolerant is to strictly adhere to the gluten-free diet. One study shows that only 52.1% of those with celiac disease adhere to a gluten-free diet.(7) What will your New Year's resolution be now? References: 1. Omega-3 Fatty Acids University of Maryland Medical System (Accessed December 6, 2012). 2. Inflammation (Accessed December 7, 2012). 3. The Nutrition Source, Ask the Expert: Omega-2 Fatty Acids Harvard School of Public Health (Accessed December 6, 2012). 4. Circulating long-chain w-3 fatty acids and incidence of congestive heart failure in older adults: the cardiovascular health study: a cohort study. PubMed (Accessed December 6, 2012). 5. Denise Lynn Mann Rheumatoid Arthritis Diet: RA and Food Allergies (Accessed December 7, 2012). 6. Dr. Jonathan Brostoff, M.D. Food Allergies and Food Intolerance: The Complete Guide to Their Identification and Treatment (2000) 7. Talluri SK, Besur S, Talluri J, Department of Internal Medicine, McLaren-MSU Internal Medicine Residency Program, Flint, MI - A Population-Based Survey of Celiac Disease in the United States (Accessed December 7, 2012).
  5. 06/24/2017 - A long-time pasta lover with celiac disease is desperately fundraising for surgery after losing half his body weight on a gluten-free diet. Years of eating lots of pasta and high calorie meals had left Christopher DeLorenzo weighing over 400 pounds. "My grandparents were Italian so I grew up eating lots of pasta…all I would do was eat, eat, eat always pasta and pizza, my stomach was like an endless pit," said the Phillipsburg, New Jersey, native. DeLorenzo's battle with portions and weight began early. At just 12 years old, he already tipped the scales at 250 pounds. His struggles with food led to years of dieting, and numerous attempts to lose weight. "My digestive system was terrible before weight loss surgery. I was forever complaining to doctors that there was something wrong but I was told that I was eating too much," says DeLorenzo. DeLorenzo found some improvement with weight loss surgery, but it wasn't until he was diagnosed with celiac disease and gave up gluten that he saw his health return. "Now I believe I can attribute a lot of the problems I was having to my body reacting badly to gluten." Still, the experience has left DeLorenzo with a mass of excess skin that looks, he says, like a 'deflated airbag.' He is currently seeking donations to fund surgery to remove the excess skin. Read more at
  6. I have been gluten free for quite a few years and corn free as well. My digestive issues have cleared up for the most part and the neurological issues I had with night terrors and what I call brain glitches have cleared. I am very familiar, now, with my glutening symptoms. Now, when glutened, I get blurry vision, insomnia, I get "stupid" and my stools get very mushy. Sometimes get muscle cramps or sharp joint pains. What I am trying to understand is why I get this set of symptoms when I don't think I have been actively glutened. I think this happens when I exercise or when I lose weight. My feeling is that I am glutened from the inside - that some kind of release of stored toxins are causing the symptoms. I know the answer to this is, it is not gluten because that is a protein but what is the answer. Are there other toxins associated with a lifetime of eating gluten that are stored? I use homeopathic remedies to help clear out the symptoms. One that seems to help is Apis which is a good remedy for clearing histamine. Another that works is the homeopathic Gluten remedy good for clearing out gluten. Maybe that can give a clue? Thanks for thoughts... Sandy
  7. Well I officially hit the "underweight" status of BMI charts a few days ago. I have BMI of 18.5 I think. I am 5 foot 7 1/2 inches and weighed 119 the other day. I'm pretty weirded out about it & trying not to be totally scared but it IS scary to me. I weighed up to 130-135 pounds until 6 months ago when I cut out gluten, then dairy & I don't eat meat. I am actually testing if I can have some sheeps yogurt (I know that sounds weird but who cares at this point?). I need fat. Nuts have been making me sick. I'm still trying them but then I have to take a break because I get headaches and swollen eyes. I'm trying hemp hearts right now. I tried some eggs today but I'm pretty sure my body is not happy about that. I might be able to eat whites a bit better than whole eggs but that again reduces the calories I could get from a whole egg. By the way, can eggs get gluten on them? I just wonder because some eggs make me feel much worse than others. Is it common to lose a lot of weight when you stop consuming gluten and dairy? Until just yesterday I was not having any dairy for the last few months. I might be able to get raw goats milk from a local family that has a small amount of them. I'm a little scared but more scared of losing more weight. I can't get that goats milk for at least a month though and goats milk has made me sick before from the store. I can't eat avocados or bananas either. I'm okay with most root vegetables, asian vegetables like bok choy and daikon radish, Pukka teas (some of them) and assorted fruits. I'm going to try making salad dressing from the sheeps yogurt and add hemp seeds, olive oil ( a small amount, that makes me a bit sick too if I have too much), and raw apple cider vinegar. I hope I can eat a little eggs. I can't eat beans so far but I'm going to try a certain gluten free brand to see if thats okay. I'm going to try a little garden this spring/summer/fall and see if I can eat more stuff if I grow it myself. I can eat brown basmatti rice now ( I couldn't before when I still ate gluten) and I"m going to try making my own rice milk. Then I could try making some smoothies. It's SOOO hard to get the caloried to even maintain the low weight I am now! I use cron o meter and I some days get 1/4 or maybe 1/2 of what I should. Nut butters also making me sick- I think it's the fat and my gut is not ready for it yet. I sleep more than normal right now and feel weak sometimes. Other times my brain feels much better. I'm going to try increasing vit D based on some comments on here and I was slightly low last blood test. Ugh. It's so exhausting to even eat now, I hate it. I just want to go get a pizza or something. I'm happy to cook but it's so limited what I can use. I tried some garbanzo bean flour and got sick but I'm really wondering if it was contaminated from what I've read about bean/legumes being rotated with wheat and often then stating they are gluten free. I can feel all the vertebrae in my back now too which is kind of creepy. Sorry that was so long.
  8. 01/19/2017 - When celiac disease was originally described, one of its hallmark presenting signs was extreme underweight. Along with diarrhea, digestive pain and bloating, the severe weight loss was understood to 'always' be present. Fast forward over 100 years and things have changed. Not only are many celiacs overweight, but those with gluten sensitivity are increasingly falling into that category as well. Sadly, too often doctors miss testing for these life-long conditions because of a patient's weight status. Stuck in the historical definition, these doctors have missed the current face of celiac and gluten sensitivity – a person can be any weight, and they frequently have weight to lose. We often speak of the leaky gut, formally known as a condition of increased intestinal permeability, found in the small intestine. This situation is seen most often in those with an intolerance to gluten due to their upregulation of a protein only made by humans, called zonulin. Zonulin was discovered by Dr. Alessio Fasano and his team. The zonulin molecule dictates the opening and closing of the 'gates' of the small intestine. With a surface area of over 3,000 square feet, that involves a lot of gates! While only humans make zonulin, not all humans produce it. Twenty percent do not, 50 percent has a single copy of the gene and 30 percent of the population has both copies of the gene. Those with both copies are in the unenviable position of being two times more likely to die from all causes, and the diseases they do get tend to be more severe. When a lab test was done on rats highly predisposed to develop type 1 diabetes, two thirds of them never developed the disease when they were given a drug that inhibited zonulin. I know you're going to ask, so here's the answer: A drug does not yet exist for humans that performs this function. However, it is being developed, along with a test for zonulin, by Dr Fasano. A study published last Fall in Nutrition Research titled "Potential mechanisms for the emerging link between obesity and increased intestinal permeability” and lead by TF Teixeira, found a link that could well explain the obesity issue so commonly seen. Those with an intolerance to gluten not only tend to have a leaky gut due to the above mentioned zonulin connection, but they also have weakened immune systems due to the constant assault by gluten. The weakened immune system, predominantly housed in the small intestine, is thus less able to defend the body against the normal barrage of bacteria, amoeba, parasites and the like. Why do I call the presence of these organisms 'normal'? Because it is. Now, with that said, it is NOT normal for such organisms to gain a foothold in the intestine and procreate there, but their presence is a normal byproduct of eating food, putting one's fingers in one's mouth, etc. (These are microscopic organisms so don't get too grossed out.) The point is, that a healthy immune system easily kills them; an unhealthy immune system is unable to do its job. The result is a gut full of endotoxins (toxins released from inside bacteria when they disintegrate) or other inhospitable organisms. These bad organisms thereby fight against the good ones. The good bacteria in the gut (called the microbiome) literally have a population that exceeds the number of cells in the human body by 10 times. The genes associated with this population exceeds that of the human body by 100 times. We are talking about a part of the human body, long under-appreciated, that is now being considered influential enough to be considered an 'organ' in its own right. Emerging research reveals that when this organ is overwhelmed by toxins in the gut, its composition changes as far as the balance of certain organisms (probiotics), as does its ability to absorb nutrients and expend energy (burn calories). The result is not only weight gain but increased cholesterol, triglycerides, and insulin resistance – the latter leads to diabetes, heart disease and obesity. Intestinal permeability is also thought to be influenced by a high fat and high fructose diet, plus certain nutritional deficiencies such as zinc. Another study from the Journal of Parenteral and Enteral Nutrition titled "Gut Microbiota, Intestinal Permeability, Obesity-Induced Inflammation and Liver Injury” found much the same data. They found that eating a poor diet (high fat, high fructose) could affect the microbiome in as little as one to two days – the result being heart disease and obesity. So, how do we keep our microbiome happy? Discover if you have a gluten or dairy intolerance. If so, avoid those foods. Avoid excess, bad fats including fast food, trans fats, preprocessed, prepackaged foods, etc. Avoid ALL fructose. I'm not talking about the natural fructose in fruit, of course, but all added fructose, especially high fructose corn sweeteners. If you can, get your gut tested for the presence of any inhospitable organisms that have gotten a foothold in your system. This same test will evaluate the health of your microbiome. Another test that's good, as a verifier that you're on the right track, is one for a leaky gut. We tend to recommend this one once you've been on a reparative program for a while, to confirm that we are accomplishing our goal. Do ingest 9 servings of organic vegetables and fruits each day. These are naturally healing and prebiotic, meaning that they give strength and nourishment to your probiotic population. Ensure that you are not deficient in any major vitamins and minerals such as B's, D, zinc, magnesium, calcium, etc. While it seems like a 'no brainer' to take probiotics, here's a couple of things to keep in mind. a. Use a human strain b. Get a combination of organisms such as acidophilus, bifidus, etc. c. Due to dairy products being such a commonly sensitive food, get probiotics that are free of all dairy. d. Sometimes, if you have an infection in the gut, you may feel worse on probiotics. If this occurs, stop them, of course, but realize that you should look into step 4 above. I'm happy to help you! Don't cheat. I'm sorry, but being 'good' Monday through Friday and going crazy on the weekends just isn't going to cut it if you want to be healthy. And if your health is already compromised somewhat, cheating just isn't worth the dangerous repercussions. That microbiome can change in a day or two when you've been eating a poor diet. Remember that. I hope you found this helpful. It is interesting how much we are discovering about how the health of the gut dictates so much about our general health or tendency towards disease. And it's also quite revealing how much of a culprit gluten can be when trying to optimize the function of the small intestine and its immune system. Please send me your questions or comments. I am here to help! My clinic, HealthNOW Medical Center, is a destination clinic. You don't need to live locally to receive help with your health. You are welcome to call us anytime for a free health analysis – 408-733-0400. References: Nutrition Research. 2012 Sep;32(9):637-47. Potential mechanisms for the emerging link between obesity and increased intestinal permeability.Teixeira TF, Collado MC, Ferreira CL, Bressan J, Peluzio Mdo C. Journal of Parenteral and ENteral Nutrition 2011. Gut Microbiota, Intestinal Permeability, Obesity-Induced Inflammation and Liver Injury. Thomas H. Frazier, MD1; John K. DiBaise, MD, and Craig J. McClain, MD. Volume XX Number X
  9. I have been trolling this forum for some time now, convinced that I have Celiac Disease. I’m impressed with all of the knowledge so many of you have on so many things relating to this disease. At this point I’m desperate for answers and am hoping someone can give me some direction. I apologize in advance for my very lengthy post. Last summer was a stressful time for me. My job was more stressful than usual and my elderly mother, who had mild dementia, had a bad fall and it increased her dementia tremendously. To keep from her having to go into a nursing home, I had to find 24/7 care for her and, to keep costs down, I was caring for her in her home from Friday night to Sunday night every week, in addition to working full-time. Needless to say, my stress level was out of control. About this time I had a really bad reaction when eating shrimp at home. I broke out in hives with severe itching and had a tightening feeling in my throat. I downed several Benadryl and recuperated fairly quickly. I also started having severe joint pain in my ankles and feet, making it hard to even walk because of the pain. I was also having a lot of hair loss and severe insomnia. I went to see my PCP with the complaints of the shrimp episode, the joint pain, fatigue, hair loss and insomnia. I had been seeing her for about 10 years, always with the same complaints – frequent infections, fatigue, insomnia, back pain and joint pain. She’d give me antibiotics for the infections, sometimes steroids, send me to physical therapy for the back and joint pains, and occasionally give me Ambien for the insomnia, although at one point she put me on an antidepressant, but that never helped. At this appointment she referred me to an Immunologist for the shrimp episode and did x-rays for the joint pain and said they were normal. She gave me a prescription which she said should help with the fatigue, hair loss and insomnia but didn’t say what it was. When I picked it up from the Pharmacy I asked what it was and was told it was an antidepressant. I pitched the pills and ditched the doctor cause I knew my issues were much more than depression. I went to see the Immunologist and, after much blood work, he diagnosed me with Common Variable Immune Deficiency (CVID). While I was waiting on the results, I had 3 episodes where I actually fainted immediately after eating, twice at a restaurant and once at a cook-out. The doctor said I probably had some unknown food allergy, since all of the food allergy testing he did on me was negative. I made an appointment with a Rheumatologist on my own and he diagnosed me with Sjogren’s Syndrome (SS). Because of the CVID and my lack of antibodies, my blood work was negative but a lip biopsy confirmed the diagnosis. Finally, I thought, I had a reason for all of the issues I had been having for so many years. I feel like the diseases were always there, but the severe stress just made everything blow up on me. In December I started weekly at-home infusions of Hizentra for the CVID and started taking Plaquenil for the SS. In January I started losing weight and having a lot of diarrhea. My weight at the time was 130 lbs. and my current weight is 99 lbs. Even at only 5’ 2”, it’s much too low for me. I’ve gone from a size 8 in clothes to a size 0. Family and friends are constantly telling me how thin I look. I went to a new PCP doctor and he referred me to a Gastroenterologist for a colonoscopy. That was done and the results were fine. At the follow up, I was continuing to lose weight, so he performed an Endoscopy. He said the results showed reflux and gastritis and that’s what was causing my weight loss. He told me to take Iberogast, which didn’t help at all. Meanwhile, still losing weight and still feeling bad, I went to my Oncologist for my annual follow-up for breast cancer I had in 2009. Blood work revealed my liver enzymes were highly elevated and she was concerned. She ordered an MRI which showed I had a few gallstones and a .05 cc cyst in my pancreas but the report said the cyst was insignificant because of its size and location. She referred me back to the same GI. He performed an MRCP and inserted a temporary stint into my bile duct. My liver enzymes have come down but are still slightly elevated. At that follow up, still losing weight, he decided the reason for my weight loss was my gallbladder and it needed to be removed. He referred me to a surgeon but I was concerned because I’ve never had gallbladder type pain and didn’t want to have my gallbladder removed if that wasn’t it, so I went to another GI for a second opinion. That was a mistake because that guy just raved about the other doctor and said if he thought it was my gallbladder, then that’s what my problem was. I went ahead and had it removed about 3 weeks ago. Guess what? Still losing weight! It’s not just that I’m losing weight. I don’t feel good!!! I have all of these symptoms – severe fatigue, chronic back pain, neuropathy, insomnia, hair loss, chronic diarrhea, brain fog, constant headaches, and joint pain. I was also diagnosed fairly young with osteoporosis. My eyes are always bloodshot and I often have really bad dark circles under my eyes. People often comment on my bloodshot eyes and often tell me I look “tired.” I know some of these symptoms overlap with CVID and SS, but those doctors tell me that the Hizentra infusions and the Plaquenil should give me relief from those symptoms. I have not had any new infections since starting the Hizentra. I definitely notice an increase in my symptoms when I eat a high gluten meal. I’ve suspected that I could have Celiac Disease for some time. I asked the GI doc to do blood work and reminded him that I’m IgA deficient. I also asked him, before the Endoscopy, if he would do biopsies for Celiac. He said it wasn’t necessary because my blood work was negative and seemed irritated that I would even ask. Here’s the results of my blood work: Results do not support a diagnosis of Celiac disease. Celiac disease unlikely if patient is on a gluten-containing diet and is IgA sufficient (which I’m not due to my CVID). Celiac Risk Haplotype Not Detected: One allele (HLA DQA1*05) of DQ2.5 haplotype detected. HLA DQB1*02 not detected Deamidated Gliadin Peptide Antibody, IgG (DGP IgG) 0.6 EU/ml (Ref. Range <4.9 EU/ml) Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Ref. Range <10.3 U/ml) Anti-Endomysial IgA IFA (EMA IgA) Negative (Ref. Range Negative) Total Serum IgA by Nephelometry (Total IgA) 41 mg/dl (Ref. Range 44-441 mg/dl) The doctor never bothered to go over these results with me and I had to request copies from Med Records. I searched Google for help in deciphering it all but have had no luck. To those of you that understand all of this – is there any chance I could have Celiac Disease? It appears I have one gene (?) so, is that enough to have Celiac? I refuse to go back to the GI I’ve been seeing for 9 months. I want my gallbladder back, but that ain’t gonna happen. GI’s in my area are limited and none seem to have expertise in Celiac. In the last two weeks I’ve seen the PCP, who said he doesn’t have a clue since the GI can’t find a reason. I’ve seen the Immunologist who feels that my CVID isn’t the cause of the weight loss or other symptoms. I’ve seen the Rheumatologist who feels that I may have a malabsorption issue and referred me to an Internal Medicine doctor. That doctor didn’t think it was malabsorption but suspected some type of bone marrow cancer and referred me to my Oncologist, who said no, it’s not cancer. She wants me to go to the Cleveland Clinic and see a specialist. Cleveland Clinic is about 6 hours from where I live but I'm willing to go anywhere to get some answers. Her nurse made the appointment but I can’t get in until March. The doctor has called that doctor several times to see about getting me in sooner but the doctor will not return her call. I can’t wait until March to find out what’s wrong with me. At this rate, I’ll be down to 80 lbs. by then. I’m afraid I’m going to get to the point where I have to go on IV nutrition. I don’t want to go gluten free now, although I am limiting my intake considerably, because I want to be on gluten if and when I have testing done. I couldn’t continue working full time with all of my health issues so I took early retirement and went back to work in another division part-time. I’m having a hard time even working part-time with the way I feel, plus having constant doctor’s appointments and recuperating from surgery. At this point, I’m desperate for help. Any advice or suggestions you can give me would be greatly appreciated!!!
  10. 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!!!!
  11. 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.
  12. 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.
  13. 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
  14. 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?
  15. 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!
  16. 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.
  17. 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!
  18. 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.
  19. 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
  20. Please help!! I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet. It seems that there are thousands of websites on tips and tools of this problem, but where do I start? Any and all help would be greatly appreciated!! Thanks so much!!
  21. Hello! I'm new here I don't have celiac disease (confirmed by biopsy), but I am gluten intolerant and thus have been put on a gluten free diet. Actually, my gastroenterologist told me to go gluten free a couple years ago, but I didn't want to bother because I thought it was too big of a hassle and that I don't really need to do it...then the turning point came last week when my endocrinologist (I have hypothyroidism) increased my medication yet again and I remembered the possible connection between gluten intolerance and other autoimmune diseases/thyroid disease. I am actually a professionall trained ballerina, I study in Russia, but I became so ill from the hypothyroidism (and maybe the gluten intolerance) that I had to return home on medical leave and I am only cleared to go back to Russia in January! Oy. Anyway, something clicked and I decided to finally take the initiative to do what I was supposed to do two years ago and go gluten free! I have to be healthy to dance So I am new to this - it's been less than a week! But within the first day I noticed an obvious difference - and I must say I am stunned. I am also pleasantly surprised that I am having an incredibly easy time with this! My mom said that the fact that it is so easy for me might suggest that my body really does need to be gluten free. I also think it's because I already don't eat many processed foods to start with, so I guess I didn't have to go through as big of a 'loss' as many others do. Anywho. I have a bit of a dilemma and I would really appreciate your suggestions on this! I currently walk to work but I am now upgrading to RUNNING to work! This is awesome and I am so proud of myself It does bring with it a small issue - lunch - but luckily it can be worked around and remedied! On Monday mornings I will walk instead of run so that I can carry a backpack with lunch food for the week and work clothes for the week, and walk home to bring it back on Friday afternoons. As such, I am trying to make a list of foods I can keep at work to fix myself a lunch. The catch is that the items need to meet the following criteria: Very limited fridge space, but plenty of cupboard space Gluten free obviously Peanut/tree nut free (not allowed at the school) I DO have a microwave. I am in walking distance from a supermarket that I can go to if I must, but I am trying to save money so would rather not make a trip there every day. And I am trying to avoid snack items and focus more on actual real food (I don't like snack products so much). I figured I should invest in a microwave rice cooker and possibly a microwave pasta cooker in light of some of the items I have come up with, listed below. So, anyone care to add to the beginnings of what I hope will be an extensive, creative, and impressive list? 100-cal packs of popcorn Packets of grits Gluten free oatmeal Cream of rice Bob's Red Milk gluten-free Mighty Tasty Hot Cereal Knorr Bouillon Yogurt Beef jerky V8 cans gluten-free cold cereal Milk Almond milk gluten-free Bars (KIND, NuGo, Luna, etc.) Tuna Avocados Baby carrots Fruit Applesauce/Buddy Fruit or other similar Rice, buckwheat (I can invest in a microwave rice cooker) Potatoes, sweet potatoes (I can make those in the microwave, right?) Are there any other self-stable veggies I can cook in the microwave? That's all I have for now! I am so sorry this post was so long, I just wanted to introduce myself properly since it's my first post
  22. I have endured gastro-intestinal symptoms for a long time such as cramps, gas, constipation, fatty stools and diarrhoea. As a result I was diagnosed with IBS twelve or so years ago. Along with this I have experienced low weight and unexplained weight loss for nearly a decade. This has progressed from me finding it difficult to stay at a low but healthy BMI, to struggling to stay in the underweight rather than dangerously underweight category. I went to a doctor (not my usual GP) as I was worried about my weight loss and felt that it might be related to my GI problems. I explained that I felt as though I was not getting any energy from my food and was worried that despite gorging myself on high calorie food, I could not even maintain my weight, never mind gain any. This doctor said it was probably nothing to worry about as I am young and healthy. At this time I had never heard of coeliac disease. Not too long afterwards my sister started experiencing similar symptoms and saw our usual family GP who gave her a battery of tests. Her coeliac test game back positive which led to me looking into coeliac disease and realising how well it could explain the problems I was experiencing. I went to the same doctor who duly gave me tests for coeliac, iron levels, and inflammatory bowel disease - and expressed surprise that I'd had no such tests. After waiting what seemed like an age, all my tests finally came back. To my annoyance, the coeliac test was negative. I was so hopeful that I might have found the answer to my problems that I felt somewhat defeated, and sure that I was just going to by palmed off again as a time waster. The only thing that came out unusual was my iron levels, which were low. As a 25 year old man who puts a lot of effort into my diet this seems very difficult to explain. When I went back to my doctor he took my weight (60kg). Which he noted was a 9kg reduction from the last time I had been measured just five months prior. He also agreed that there was no easy way to explain why my iron levels were so low and told me he was going to refer me for an upper and a lower endoscopy with biopsies. He even said that in his opinion he feels coeliac disease is still the best candidate for the cause of my problems despite the negative blood test. I must say I feel fantastic that my problems are finally being taken seriously, though I have absolutely no idea what my endoscopies throw up. I really hope it turns out to be coeliac as it could be something much worse or even worse it could be inconclusive in which case I have no idea what might happen next. I wonder, has anyone else had an experience like this where their symptoms indicated the need for biopsy even after a negative blood test. If so what was the result? Are there any other conditions that might turn up which would cause the same profile of symptoms?
  23. I'm curious to know when you started gaining weight? I have been gluten free for more than 6 months and I just recently had normal antibody levels too. But, I'm still not gaining weight and having a tough time managing my weight. I'm dairy free. I eat until I'm full, eat 3 meals, 2 snacks and some fruit everyday. Thanks for your help.