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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

squirmingitch

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About squirmingitch

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    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. Yay, Yay!!!! Good for you persisting. This is also a lesson to others on how important it is to get copies of your medical records & check them over yourself . Also, a big WHEW! it's nice to know your doc at least recognizes that only one positive is required to move to the endoscopy.
  2. I had hot flashes like going through menopause. I had swollen lymphs but I can't say they came & went. I could both see & feel mine in my groin area. They went for good after being gluten free for a while.
  3. If you turn out to have celiac, then all first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present.
  4. Here's the thing too...... you have kids. Celiac is genetic. If you have it and get a bonafied dx, then it will be much, much easier to get your kids tested, not to mention other first degree family members.
  5. Galaxy, No I didn't notice any difference in the pain with eating, not how much or what I ate. As far as the joint & bone pain beyond my back..... it would move around my body with no rhyme or reason. One day it would be a hand or both hands, that might last1/2 day or 4 or 5 days, meanwhile that might be joined by my right knee. Then everything might just clear up completely & I would be good for a few days....or not...often I would get free of the joint/bone pain & a couple hours later it would strike say my shoulders or hips or one of each. For a long time my hubs & I tried to associate it with some action that I had done. My hubs would remark that I had carried that package so that must be it or I had run while playing with the dog but these things turned out to have nothing at all to do with when & where it struck. With the joint/bone stuff it would start out hurting & getting stiff & from there it would just rage out of control & only when it had reached it's peak of pain, that area would begin swelling -- no redness to the skin but I would not be able to move that hand or shoulder or knee or whatever. Places would swell greatly & only when the swelling went down say 50% would the skin turn red. Weirdest thing I've ever had happen to me. I had no clue any of this was connected to food other than every time I ate oatmeal or cream of wheat or strawberry shortcake (all BIG favorites of mine!) I would get super bad bloat but there were times I didn't eat those things & got super bad bloat anyway. Once again I agree with icelandgirl on calling the GI's office. Don't sit & wait for them to call you. There are people on this board who have even called every single day asking if there were any cancellations so they could take the appointment. It works if you persist and it's worth it to persist. Malabsorption is what causes all the problems Galaxy. Malabsorption turns essentially into malnutrition. Our bodies get starved of nutrients they need to function properly. That can affect any part of the body. No nutrients or few nutrients means some part or parts don't get the vitamins & minerals it needs. I had a whole lot more symptoms than the ones I detailed but I was just hitting on the ones you had asked about. Who knew they were all related though? I certainly didn't!
  6. Hey Galaxy, Oh boy! Let's see..... I laid in a closed MRI machine (& I have severe claustrophobia) for 3 solid hours so they could do all 3 parts of my spine in one appointment. The only break I got was when they pulled me out once so they could recalibrate the machine. I was allowed to sit up & that's all. I got to sit there for all of about 3 minutes & then back in again. Know what they found? Not a lot. Piddling stuff. What took me to the MRI? Unrelenting pain that claws at you 24/7. It felt like toothy battery charger clamps were clamped onto my upper spine from between my shoulder blades all the way to the base of my skull, my lower spine felt like hot coals constantly, the middle part of my spine felt horrid all the time. Besides that, I would have joint & bone pain (not at joints) that was so horrid I couldn't spare the energy to cry or scream. Opioid pain killers didn't even phase it. Nothing helped the tiniest bit. The only relief I could get at all was to use ice packs until I was absolutely numb. You're not supposed to keep ice on for long periods but I did. I didn't care what damage it might do me, I would keep the ice on for 2 hours. The pain would get so intense that I literally could not move or sit or lift my arms or use my hands. A kleenex gently brushing across my hand would send me through the roof. I was sure that within 6 months I would be in a wheelchair for life. I just knew I had cancer eating me alive. Nope, it was celiac. So yeh, all that can be caused by celiac. For the first time since I was a teen (I'm 60 now) I have ZERO pain in my spine. ZERO!!!! Gluten free for 5 years now. No migraines which I had had since I was about 25. Bloating? OMG!!!! I looked like I was 14 months pregnant. There were times I really thought my abdomen would just pop & burst all over just like a balloon pops when you blow it too full of air. I used to imagine how little bits of me would be splattered all over the walls. Gas --- I should have had stock in GasX. Gas pain like lightning coursing through you. No diarrhea, no constipation. Nausea yes. Dizzy/vertigo absolutely. Brain fog. There are some 300 symptoms associated with celiac disease. It can affect every cell in your body. 50% of diagnosed celiacs did NOT present with any GI issues. I agree with icelandgirl about getting your doc to get the ball rolling by ordering a celiac panel for you. Any Dr can do that. That would include: IgA, TTG-IgA, TTG-IgG, DPG-IgA, DPG-IgG and EMA.
  7. I agree!
  8. Brain fog, can't remember sh!$, and anger is what happens to me mentally. I have a hair trigger when I get glutened.
  9. Use your own special dish/hand towels in the kitchen too. Colander & toaster. NO sharing condiments unless they're squeeze bottles & they make sure not to touch the tip to the bread --- your own sticks of butter for the same reasons. And if the roommates want to mix up a gluten cake or make gravy or anything involving gluten flour you will HAVE to put your foot down with them. Gluten flour hangs in the air for hours! If you breathe it, it goes down your throat. What goes down your throat goes INTO your tummy & you just got glutened. See? If they want to make gravy teach them to use corn starch for it. Namaste makes some really good cake mixes. My hubs & I adore their spice cake mix which can also be turned into a carrot cake. I don't know if it's cool for those in college to drink wine these days but if it's cool enough to not make you feel awkward, then you can drink wine.
  10. I looked up my receipts for the Shingles Vaccine. We both got ours late Nov. of 2014. My husband has Medicare & his bill was $236.99; he does not have Part D coverage. I have CHAMPVA & my bill was $72.29. Here is information on Medicare coverage of the shingles vaccine: https://www.medicare.gov/coverage/shingles-vaccine.html The shingles shot isn’t covered by Medicare Part A (Hospital Insurance) or Medicare Part B (Medical Insurance). Generally, Medicare prescription drug plans (Part D) cover all commercially-available vaccines (like the shingles shot) needed to prevent illness. Contact your Medicare drug plan for more information about coverage.
  11. jmg is right. Yes, what you're going through is normal and yes, for a while you're going to look at that gluten in the kitchen & feel like making your fingers into the sign of the cross as if the gluten is a vampire. EEK! It takes time. Feel free to come on & rant though anytime you need to. We're here for that too.
  12. I hope you do when the time comes Raven. From my research the vaccine still goes a log way to preventing a second shingles party. I did the vaccine last year because every single person I know who has had shingles says it's the worst thing they ever had to deal with. I am so very sorry you are having to deal with this. Oh man, when I hear you say you'd rather deal with dh than shingles any day, I can't imagine how beyond horrid it is for you. I'm sending every positive thing I have your way hoping the Valacyclovir works a very nice treat for you & SOON! Huge hugs! {{{{{{{{{{{{{{RAVEN}}}}}}}}}}}}}}
  13. For the blood test or the dh biopsy you need to eat gluten for 12 weeks. For an endoscopic biopsy, you need to eat gluten for 2 weeks. Yep, eat hearty! You might just be saying goodbye to gluten forever so eat all your favorite things. However, there are gluten-free replacements for everything!
  14. It's no wonder the biopsies came back negative for dh. You state yourself that you have pretty much been gluten free since the beginning of the year. You won't get a positive if you've been gluten free. In order to really find out, you would have to eat gluten every day for 12 weeks & THEN get a dh biopsy.
  15. BTW, I had so much pain throughout my entire body that I was positive I would be in a wheelchair for life within 6 months time. I had a full spine (that's all 3 sections) MRI. Turns out there wasn't anything that should be causing me all that trouble. I would get frozen shoulders, frozen hips, knees, hands, feet, you name it. NOTHING helped the pain -- didn't even touch it & that includes opioid painkillers. I would just ice myself till I was numb which is not a good thing for you to do but it was the only way the pain would stop.