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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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  1. Painful Thyroiditis?

    another update -- my TSH continued to increase until it was just a hair under 40 (ref: 0.520 - 5.080) in Late Feb. I was put on synthroid and it dropped to 0.15 in March. When it hit 0.15, my synthroid dosage was dropped a little until my doc thought I'd become stable. However, now in Sept, I'm getting thyroiditis symptoms again (hyperthyroid: crave sugar, can't sleep, hot flashes, I talk too much, and same throat pain as before) and my TSH is back down to 0.3. I'm worried about recurring thyroiditis. I had hoped it would go away this summer for good.
  2. Painful Thyroiditis?

    End of Jan: I returned to the doc w/ continued hyperthyroid symptoms (lots of energy, racing heart, insomnia, weight loss even though I was eating all day long) and she tested my blood again and put me on blood pressure meds for heart palpitations. At the office, my blood pressure was still within the normal range, but was very high for me (usually, I have hypotension). Feb 13th: back in again w/ a slight change in symptoms, so doc pulled blood and it came back as follows: TSH 19 (ref: 0.35 to 5.5) -- yes, that's 19, not a typo T4 0.4 (ref: 0.58 to 1.38) Feb 19th: Blood draw again, no results in yet. Feb 22: starting to feel hypothyroid again (slow, tired, weak, dry skin, puffiness, etc.)
  3. Painful Thyroiditis?

    Dx is: de Quervain's thyroiditis (aka subacute granulomatous thyroiditis or Giant Cell Thyroiditis). Here's the history: Day 1 through Today: severe throat/neck pain. started on left side and radiated into both ears. moved to middle of throat and caused difficulty swallowing and weak voice. moved to right side (radiating more into right ear). moved back to center and caused swallowing difficulties. currently mostly on right side. started with about 3-4 advil per day, peaking at 10+ advil per day around week 3. advil pm at night throughout -- at first for pain at night. then I stopped taking them and just took regular advil, but now I have insomnia and am back on them. also unexplained itchy hives--mostly around neck, that last a few hours and then clearing up completely. First three weeks: extreme fatigue (not extreme everyday, but tired everyday). I wanted to sleep all day long--worst sleepiness ever. no appetite. weight loss. low temperature (around 96.5 degrees) and low blood pressure (110/44) and pulse (50 bpm). always cold (I often used 4 blankets and was wearing a sweater while being a complete slug on the couch) lightheadedness, especially after eating. Blood work: lower than normal TSH and normal T4 (see first post) Physical exam: throat perfectly ok. thyroid slightly enlarged and hardened. tender to touch. Starting fourth week: energy increased, blood pressure still low, but pulse very high (95 bpm). intolerance to any pain killer (nausea) except advil. my appetite returned. continued cold intolerance, but not as bad. Ultrasound results: thyroiditis Middle fourth week: high blood pressure 137/79 (my blood pressure has always been below normal so this is very high for me). moderate pulse. chest pain. appetite returned. energy returned. severe insomnia (I'm taking 2 advil pm at night and still can't sleep--normally 1/2 of an advil puts me to sleep for hours, but not now.) on and off cold intolerance. Blood work: TSH 0.1 (range: 0.52 - 5.08) and T4 2.54 (range: 0.58 - 1.38) Fifth week: chest pain, headache, purposely cutting down to 3-4 advil a day. 2 advil pm at night because of severe insomnia -- doc visit scheduled for tomorrow to talk about beta blockers for heart issues. weight loss in past 5 weeks: 12% of body weight (and I started out under weight)
  4. Painful Thyroiditis?

    Test results are in: *TSH 0.6 (range: 0.52 to 5.080) T4 1.15 (range: 0.58 to 1.38) Thyroid Antibodies: <10 (range: 0.0 to 35) *for the past 10 years, my TSH has typically hovered around 2.10 Other: Below Range: HGB, HCT, Lymph %, Sodium, Urea Nitrogen, Creatinine, Total Protein Above Range: Neut % Misc: Glucose was near low end--this concerned doc, but I don't know why exactly. physical exam: enlarged and somewhat hardened thyroid (lots of pain); obvious fatigue/lack of energy. bp: 112/50 temp: 97.7 I've been referred to an endocrinologist. I tried calling to schedule, but the receptionist hadn't received the referral yet, told me that the docs have to approve all referrals and they dictate how soon patients can schedule based on referral information. groan. kind of tired of Advil being my most important food group. The pain has definitely been worse, and the Advil now wears off much quicker.
  5. Painful Thyroiditis?

    thank you for your responses. I forgot to mention, the doc only mentioned that the location of the pain was at my thyroid (no diagnosis yet, pending test results). it's suspected to be an auto immune thyroid issue, but nothing final yet. going in again in a couple days (when the test results get back). I'm sure I'll be referred to an endocrinologist if necessary. my gp is good about referrals. pain was worse this morning (woke me up at 4:30 a.m.) and I'd taken more Advil (plus an Advil pm) than usual yesterday/last night)
  6. Had a foodborne illness for almost a year before it was diagnosed and treated. The doc who finally caught it told me I'm also gluten intolerant (I suspected as such and had already stopped eating gluten--but only after having all of the tests for Celiac's which were negative) The treatment for the foodborne parasite ended last spring. But, I don't feel like I've really recovered. (I used to workout for 2 hours a day, 1 hour in the a.m., 1 hour in the p.m., up in heart rate zones 4 and 5; These days, I haven't been able to work up to 20 minutes at one time of steady aerobic activity.) About 2 week ago, got a severe sore throat--worked its way up into my ears, back of my head, jaw, and started radiating down into my chest. Went to the doc (after 10 days of pain that seemed to just get worse). Doc told me it's my thyroid (inside of throat is fine). My blood pressure was 111/44. Blood work is currently in progress. The pain is horrible--Advil helps. I'm also super exhausted. (Advil helps the exhaustion a bit, but caffeine doesn't help it at all and I don't have a high caffeine tolerance so it should be helping--but doesn't). If you've had anything similar (any sort of painful thyroid condition that popped up out of the blue) how long did it take to go away. What caused it in the first place?
  7. Starbucks...grrr

    grrr I agree. Bad experience there today. When I asked if one of the beverages was gluten free (and I was the ONLY person in line) the Starbucks cashier gave me a half angry/half clueless look and said: "I have no idea." When I mentioned: "it is important", she yelled across the store to her co-worker: "Is the egg nog gluten free?" Co-worker replied to her that she'd need to read the label. She looked at me and said: "I'd have to read the label" as if I hadn't heard and as if it was a huge problem for her to do so, and then she continued to stand there staring at me, tapping her fingers on the register waiting for my order. No tip for you! (I spend a ton of time traveling which is very difficult being new to all this. Just 2 days ago I gave a 30% tip to a very helpful hotel restaurant waiter. They didn't have a gluten free menu and I don't think he'd ever had a request for gluten free food--he probably didn't even know why I was asking for gluten free, but at least he tried and was pleasant.)
  8. I suggested to my local doc either this (above) or eating lots of gluten and getting re-tested (a recommendation from the out of state hospital.) He told me to just go off gluten and see how I felt. However, I also recently purchased 'Celiac Disease, a hidden epidemic' (Green & Jones) and read that it is not advisable to go gluten-free without a diagnosis because 1) you may be subjected to a strict lifelong diet unnecessarily and 2) it can confuse later test results--specifically, the gluten challenge is controversial (some people don't have repeat symptoms for up to a year after starting to eat gluten again.) Now, I am confused. Although I do feel better, I have been eating two to three times as much as I had in the last three month. Maybe I just had a virus or something that is now clearing up? Should I just tell him it worked and start eating the stuff like mad and get re-tested in a month or two? On the flip side, being sick over the holidays will truly suck.
  9. Check the ingredients for products by: Fresh, Tarte, philosophy, and Korres on the Sephora website. (The Sephora site lists ingredients for many products). I think Tarte even uses corn-based packaging/containers instead of plastics. I have good luck at the Sephora store too--typically you can find reps at the store for a number of the brands. The brand reps are usually fun and helpful. I've heard MAC is another option, but I haven't researched them and can't find an ingredient list on their site.
  10. P.f. Chang's Plates?

    Does PF Chang's put gluten-free Lettuce Wraps on special plates as well as their entrees? I ate their today with friends and our waiter seemed a bit new. I mentioned to him twice that all of my food should be from the gluten-free menu only. He brought out the soups for the table and they all looked the same (I ordered the gluten-free egg drop, everyone else ordered the egg drop soup from the regular menu.) I ordered gluten-free Lettuce Wraps to share, and they came out on a regular plate (plain, no "P.F. Chang's" painted on it). The waiter brought those to us too. However, when my entree came out, the kitchen brought it, stated that it was gluten free, and it was on a special plate with "P.F. Chang's" painted on the plate.
  11. Results are all in and there is no indication of anything. (I had tons of tests including biopsy.) No explanation for sudden weight loss or any other symptoms. Not sure what to do next except for taking lots of meds and trying to deal with it. frustrated.
  12. Yes & thank you. It has only been a couple of weeks and not super consistent (avoiding dairy has been very consistent, but I have been getting gluten here and there--I don't understand how to avoid it completely, it's almost an impossible task for someone new.) Per recommendations, ate an equivalent of about 2-4 slices of bread (from a bakery loaf so it didn't work out into neat regular slices). Plus, had 2 small servings of veg soup (light tomato broth based). Not sure which did it, but had a terrible night, no sleep. This was after coming off a pretty darn good day and weekend. This is not looking good Dear Santa, This year for Christmas I would like a dx of Giardia (NOT Celiacs) With Lots of Love & a Bowl Full of Jelly, Pizza and Beer Lover
  13. Top Five Reasons To Get A New Doctor

    Practitioner 1 presses on your belly, about 2 inches Southwest of your belly button and tells you: "That's your uterus" Practitioner 2 (because you have already fired practitioner no. 1 for failing basic anatomy) presses 2 inches south of your belly button and tells you: "That's your aorta"
  14. Thanks so much for your friendly reply. Yes, I believe the facility is known for its gastrointestinal diagnostic facilities, especially for Celiac's. I was referred by a doctor friend of mine who doesn't treat me, but she knew of the facility--and she told me I looked terrible. Their website mentioned something about not going gluten free before you get tested--not good since I've been trying to eat things that minimize my symptoms. I haven't gone 100% gluten free, but in order to keep the symptoms at a minimum, I'm only eating sports drinks with electrolytes, rice milk with very small amounts of blended banana and egg white protein powder (non dairy, no casein, whey, or "lacto"), small amounts of plain white rice and I experiment a little for dinner. Canned soups don't work at all for me (although they typically have noodles: vegetable noodle, chicken noodle, etc.). I try to eat non-processed foods too, so I'm pretty good at avoiding dairy although I did try a little butter this weekend in some whipped sweet potato just to see if I could tolerate it. (It's my first dairy since mid-August). Will I fall off the deep end this week if I add back some high gluten foods? (kinda scary) I'm trying to work a 40 hour week. Also, what about fat? Fatty foods have also been scary--but I think I'm lacking fat in my diet. Thanks again--am glad I found this site.
  15. Background: I've been struggling since earlier this summer with severe symptoms including abdominal pain and pressure (various locations), some very strange lightheadedness, diarrhea, frequent urination (especially at night soon after laying down), and have lost almost 15% of my body weight since mid-September (2010). I'm now about 115 lbs and really working hard to at least maintain my weight by experimenting with different ways of getting calories--but to keep my symptoms manageable, I eat a mostly liquid diet with very few foods. My significant test results have included: constantly having at least trace and up to 50+ rbc in my urine (treated w/ antibiotics when it reached 50+), slightly low on the following: HGT, HCT, Sodium, Iron, Potassium (both high and low), and very low Lymph %, (all treated w/ Fergon [iron], a multi-vitamin, and extra Vitamins C and D). Other tests, including 2 CTs (regular and contrast) and a colonoscopy produced no findings (and, no significant findings from my ob/gyn.) No illness or symptoms prior to this summer (past health: excellent health, high exercise level, and diet heavy in fish and vegetables). I haven't been receiving optimal care where I live so I scheduled and appointment at an out-of-state medical center with a good reputation. My questions: My appointment is in a week. To prepare for the appointment: - Should I stop taking any of my vitamins? (I only started taking them 2 months ago.) - Should I try to add gluten (or solid foods) back into my diet? -- although, severe symptoms would be hard to deal with while traveling. (I don't believe I have any method of contacting my assigned physician prior to my appointment to ask these questions.)