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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Celeste77

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  1. Holy Cow, Holy Red Bull... The most bizarre thing... I’ve had a few commitments over the past handful of days. Desperate for energy and the ability to think/function, I grabbed Red Bull from the gas station. I know, terrible, but desperate. The first one (Saturday night) was helpful but no more helpful than a cup of coffee. But then I had one yesterday, a larger one, HOLY COW! I wasn’t jittery or crazy energetic, I just felt….NORMAL. So then this morning I had a long drive in front of me so I had ½ of a small Red Bull and stopped myself… realizing that it is Red bull after all and I don’t want to push a PPM issue. I’ve also been a no packaged or processed foods girl for 3 months now, so this is a big NO for me. BUT, for the first time in a loooooong time, I didn’t feel drowsy or spaced out, my body didn’t feel heavy, I just felt calm and normal and happy! I even tossed some witty sarcasm at my fiancé who was thrilled to see “me” shining through. For anyone who isn’t familiar, Red Bull has less caffeine that a cup of coffee but it does have B12, B6, Niacin, Panthothenic Acid, all in measurable quantities that exceed 100% of the daily recommendation. I drink about 3 cups of coffee a day (I replaced my coffee with Red Bull in these instances) so I can say with confidence, that it is not the caffeine. 2 weeks ago I reached out to my endocrinologist asking if he’d retest my B12 levels. I didn’t get a response. Last Thursday I reached out again and heard nothing until today and now playing phone tag with the nurse. Wouldn’t it figure? After I decided to abandon my better judgment and consume these drinks? Does anyone know if consuming high doses of B12 alter my blood tests and if so, for how long? I’m having him check serum B12, methylmalonic acid, homocystine, folic acid. I’m done with the Red Bull binge. There are other things in the drink that I don’t want in my body of course. But I could just cry thinking that I could, and likely will, go back to feeling horrible again. As always, thank you everyone for all of your comments & suggestions! I am reading them and taking all very seriously.
  2. Fatigue!

    Hi Gwynanne, I completely relate and have had the same experience. For me, extreme fatigue and cognitive issues have been the most miserable and devastating. I was diagnosed 1 year ago. Right about 6 months gluten free, I was where you are right now. I was too exhausted to make myself food so many times I just didn't eat. And while the obvious reaction is "oh, you're tired because you're not eating", I can assure you that for me, that was not the case. My fiance eventually realized I wasn't eating and started monitoring my food intake but no matter how much I ate, or didn't eat, or the quality of what I ate (endless elimination diets and zero processed foods, no grains or sugar, etc) nothing worked. It wasn't until October when I saw a sleep specialist, that my ferritin was recognized as a major problem. It was only at 5 and my other values were starting to drop as well. Although I wasn't technically anemic, I was to weak to walk up stairs and I had horrible restless leg issues, so the sleep doc referred me to a hematologist who agreed to iron infusions (I couldn't tolerate iron pills). I really noticed a HUGE difference!!... for a short period of time anyway. While I'm not as bad as I was 6 months ago, I'm heading south again. I suspect an undiagnosed B12 deficiency (that's another sorted story) so I'm heading back to the hematologist to find out. Did you make an appointment to be tested for deficiencies? One big lesson learned was that you do not have to be anemic in order for low iron to take a major physical toll on your body. I hear it's the same for B12 deficiency too. The tingling you mention could be B12 or thyroid or a number of things but IF (I'm not a doctor, of course), IF it's some kind of neuropathy setting in, you really need to find out by way of testing. Neuropathy can become permanent if the cause isn't diagnosed and treated, and the sooner the better. I do agree that it could be diet related, perhaps controlled by eliminating the offending food. But don't assume that it is or that it will go away in time. I understand your sense of urgency. I've been engaged for 3 years now, been sick for 4, and still waiting to plan my wedding. I'm 37 and running out of time to have children or it certainly feels that way (an intuition I suppose). The only thing I can tell you is to fight for it. When you're exhausted and miserable, sometimes anger is the only thing you can feel. Use it to fight for your health and fight to be a part of all the blessings about to come your way. If one doctor won't listen or writes you off as "depressed", he/she is of no use to you so move on and find someone who will listen and help you. If you think of it, post back and let us know how you're doing. Best of luck to you!! Celeste
  3. Thank you for sharing your experience. How long did it take to get your brain back, so to speak? I was diagnosed 1 year ago today and while my GI symptoms are gone and biopsy pathology is back to normal, my brain & extreme fatigue remains unchanged. I still can't function on a daily basis. Did merely changing your diet work for you or were there other issues (vitamin deficiencies, co-existing medical problems) that had to be corrected before you felt better?
  4. Thank you everyone for taking the time to read my post and respond. This is very exciting as I've never spoken to someone with this disease before. Many people (friends/family) are irritated by me and "my disease" and others tolerate it, so I wouldn't say I have much of a support system. I'm so happy to have found this forum and incredibly grateful that people I don't even know would give me their personal time and try to help. Heart warming for sure. I have some additional questions. The mast cell syndrome that's been mentioned, is there a test for this or is it an elimination diet? If it's an elimination diet, how long until I would be able to determine whether or not this is this problem? I briefly read through other posts related to the mast cell topic and it seems as though a diagnosis is nearly impossible. I'm not in need of a diagnosis per say, just wondering how to pinpoint whether or not this syndrome is my issue? Does an antihistamine help? Regarding the B12 issue, perhaps not converting or methylating. I saw an endocrinologist last week and asked for my B12 to be rechecked, including my methylmalonic acid, and he didn't order the tests. I've contacted his office to let him know that it wasn't on my lab order and I'm not getting a response. Should I just go for Methyl B12 supplement on my own, to see if it works? Do any of you see a certain type of doctor, your go-to doc? Is there a specific type of doctor that I need to seek out? It's been hard enough to get a diagnosis, even harder to get attention and proper after-care for deficiencies, thyroid, etc. I just need someone who actually knows what to look for, runs the right tests (without me walking in with a list and insisting), someone who can provide real medical insight & help. I resigned a year ago and haven't been able to go back. But my savings is now gone, wedding funds are gone, wedding dress is for sale (I got engaged right as my health was starting to decline, wedding postponed indefinitely at this point) I'm going to lose my house, car, & my fiance and I are barely getting by. I have to go back to work but my profession requires me to be mathematically and analytically accurate, quick thinking and my memory sharp. For the past 12 years, I've worked a minimum of 60 hours/week and so stamina it's mandatory in my profession. I'm afraid I wouldn't be able to get through an interview without spacing out or losing my words, how do I fake being sharp and capable? I have an excellent reputation in my industry and terrified of destroying it....the very 1st week back. Sorry, I know I'm off topic, but I guess I needed to vent a little or maybe I'm hoping for someone to respond and say "oh, it's definitely possible to get your life back and feel good again because I was able to do it and you can too.." Anyone?
  5. Wow! What a wealth of information that website provides! This may explain my high blood pressure that I've had since my mid 20's, I'm in my mid 30's now and it seems to be getting worse with no explanation despite an absurd amount tests. Thank you for providing the link! So, so helpful!
  6. This is my first post. I guess I'm hoping that someone will read this and be able to offer some advice. Perhaps point me in the right direction.. I was diagnosed March 2013; biopsy showed partial destruction of intestinal villi (Marsh lll), blood test marginally positive. My symptoms did not go away on a gluten free diet, in fact I got so much worse that eventually I couldn't get out of bed and was forced to resign from my job, my career. Bloated & painful abdomen, reflux, abdominal pain, exhaustion (arguably the worst symptom of all), dizziness, muscle weakness, confusion, depression, anxiety. Nothing changed on the diet, no improvement whatsoever. In July I was diagnosed with a bacterial overgrowth and felt a bit better on antibiotics but overgrowth & symptoms returned. I eliminated grains, sugar, starch, specific fruits & veggies which calmed down the abdominal symptoms & I continue to manage the overgrowth by eating this way. But the non-abdominal symptoms remain. In October I was diagnosed with iron deficiency, rock bottom iron levels but not yet anemic. Was also diagnosed hypothyroid. I received iron infusions & started thyroid meds (armour thyroid) and I actually started feeling somewhat better for a month or so....but not so much now. My blood levels are now normal, normal = what they were before I got sick. I've been tested to a ridiculous degree for many many autoimmune diseases. While I have a positive ANA, all other tests are negative. No lupus, no connective tissue disease or any other disease for that matter, and no "tender points" indicating fibromyalgia. The damage in my gut is healed, celiac related antibodies are negative and even on the low end of normal. The only abnormality is my B12 blood level which is blowing off the charts (excessively high, around 2000) and it's been like this since diagnosis. I do not take any supplements since my only deficiency was iron, and I didn't take supplements prior to diagnosis either. Strangely enough, my lingering symptoms are in line with B12 deficiency... At this point I have debilitating exhaustion & I'm having to take naps every day, I have trouble carrying conversations or finding words perhaps because I'm simply too tired to, depression & anxiety not responding to antidepressants, muscle fatigue with racing/pounding heart when exerting myself by doing things like....dishes... Has anyone ever seen or heard of excessively high B12 before? Or is there something else I'm overlooking that I should be checked for? All suggestions are welcome. Unfortunately I can't leave it for the doctors to figure out. Some of them are at least honest and admit to not having experience with celiac patients and the others just look at me like I have 3 heads. I've had to push for blood tests (even for things like CBC and iron levels). I find myself having to educate them about the disease and once I had to explain (almost argue) the reason why I couldn't take a prescription that contains wheat starch... Any help/suggestions/info is most helpful. Thank you! Celeste
  7. I agree with the person who mentioned the genetic testing; would be the only tests that won't be influenced by your current gluten-free diet. I have to say that the muffin challenge is the worst idea ever and a HUGE red flag to me. My jaw is still on the floor. It is not possible to draw a definitive or measurable conclusion from simply eating a muffin, gluten free or not. Many Celiac do not have instant reactions or obvious reactions but this does NOT mean damage isn't being done. And if there is even a chance you truly are Celiac, no doctor in his right mind would give you poison just to watch and see what happens!! This is not okay as with celiac disease what you don't see can seriously hurt you, especially when if you are one who lacks instant reactions. Also, have you been tested for small intestine bacterial overgrowth? I was still sick after diagnosis, after being gluten free for 5 months. I went back to the GI many times and finally insisted on getting a hydrogen breath test which lead to the bacterial overgrowth diagnosis (common in the newly diagnosed who do not improve with gluten-free diet) treatable with specific type of antibiotics and then heavy doses of probiotics. I truly understand your frustration. But the only thing worse than being told you ARE Celiac when you're NOT, is being told you're NOT when you ARE. The latter is a mistake that can rob you of your health, life, relationships, memories, career and eventually you end up on your death bed wondering how you got so sick. It happened to me so please check this doctor's credentials. I never had diarrhea or weight loss or "typical" symptoms of Celiac disease. I would have passed the muffin test. Check into one of the university hospitals that specialize in Celiac research and diagnosis. Mayo Clinic, University of Chicago, and there is one in Boston as well. Or perhaps a local university hospital near you with a reputable GI division. I wish you the best & don't give up until you get a proper diagnosis!
  8. I had the same issue taking probiotics. I was diagnosed Celiac in March this year but kept getting worse on a gluten free diet. The rashes started about a month before diagnosis and were becoming more frequent after the diagnosis showing up on my wrists, chest, stomach, shins, calves. After A LOT of reading, I went to my GI and insisted on a hydrogen breath test; tested positive for small intestinal bacterial overgrowth and it was severe. I was told to stop all probiotics and I started on antibiotics (Xifaxan), 2 rounds 14 days back to back for a total of 28 days of treatment and it worked! I found a good Functional Medicine Practitioner who then started me on a crazy dose of probiotics, 225 billion CFU (the drugstore probiotics do not compare to the quality and effectiveness). I do have leaky gut which is obviously from Celiac but also caused by intestinal bacterial overgrowth. Going gluten-free was only 1 crucial step towards healing. I found I was reacting to ALL carbs (grains or starchy veggies) & sugars as the bacteria thrive on it. I also had to stop dairy as it causes inflammation throughout the body. To heal my gut and turn my rock-bottom health around, she prescribed pharmaceutical grade vitamins, minerals, digestive enzymes, probiotics, and a shake supplement to promote intestinal healing. Its a slow recovery but its working!! I have fired my GI after 3 years of missing celiac disease (5 biopsies and ZERO blood tests), SIBO, unnecessary surgeries, harsh needless medications, all which landed me on my post-diagnosis death bed. I have also fired my primary care physician who missed substantial, severe, and obvious vitamin deficiencies that may have resulted in permanent nerve damage (still unknown if all is reversible). My best advice to you is to find a functional medicine doctor who is a MD who specializes in the many manifestations, complications & hard to treat symptoms of chronic disease. I found mine on FunctionalMedicine.org, you can search by state & city. If I could go back in time, that's what I would have done in the beginning. So many of our systems rely on the crucial function of our gut so it's hard to say what is going inside of you. Eliminating one food after another assuming allergies is only going to further compromise your health (I was convinced I'd have to live on V8 & water, ridiculous). Check out the functional medicine site. Google some of the doctors in your area, check out patient reviews so you can find a good doctor & a good match for you. Then get a thorough evaluation so you can start getting better!! :-)