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    • Frequently Asked Questions About Celiac Disease   09/30/2015

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


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About trayne91

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  • Birthday 04/25/1974

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  • Gender Female
  • Interests ATVing, Fishing, Walking, My Family, My Puppies (who are not pupplies anymore), Swimming, Kayaking, Mushroom Hunting,..
  • Location Lake Geneva, WI
  1. Just an update that I do not feel any better.  I  had the small bowel follow through which was normal.  Said they didn't see anything.  My ANA test was normal.  My CRP Rate was normal.  It used to be high so that is good.  My Celiac Panel was in normal range, both IGA and IGG.  Woohoo!  As stated previously, my Sed Rate was high both times taken.  That's the only thing abnormal so far.     The rheumatologist ended up with the flu and had to cancel.  I rescheduled and he was still sick with the flu.  I then just went in to see my GP because I was in so much pain that I could not wait.  My GP looks at my labs and did a tender test on me again poking me everywhere and diagnosed me with fibromyalgia.  I was given Cymbalta, but I couldn't take it.  It really weirded me out.  My pupils dilated like an alien and I was knocked out within 2 hours of taking it for 8 hours, slept the night, and then back to a nap when I woke up again - among some other symptoms.  I was then given Gabapentin, but I stopped taking that now, too.  It does seem to help with the pain some for the few days I took it - toward the end anyway, but it seems to bring me down into the dumps.  Makes me feel really not like myself, again, and wanting to be impatient and pull my hair and cry and mopey - just depressed, so I stopped it.  I did some research and went to Walgreens and got myself some Sam-e, Magnesium, Garlic, to couple with the multi-vitamin I already take with 1000 IU of D3 to keep my vitamin D up, plus the probiotic I take.  I seem to be doing ok on this so far.  It's not the best and I'm still in a lot of pain, but at least I have my head about me.  I read I would need 800mg a day and I'm only at 400mg starting, we we'll see.     Right now I am battling a severe stomach upset for the last 2 days.  I don't know if it's something I ate, got a bug, or the Sam-e doesn't agree with me and I have to go back to the drawing board.  At any rate, I'm trying to get through it.  Hope I don't need to call the Dr. back.   My biggest concern right now is just the Sed Rate being high for almost 2 years now and fibro doesn't show an elevated sed rate.  My GP said I wouldn't have to go back to the rheumotologist now, but I'm wondering if I really need to in order to find out what the cause of that inflammation is and to get it treated as I feel masking the pain doesn't really resolve the underlying issue.  GP said I could have inflammation anywhere in the body because of all my issues.  Not sure what to do.  Keep trying different meds or go back to the rheumy...
  2. Sure.  I'll get through Monday and try cutting some things out of my diet and see if it helps.
  3.   Yes, I've been gluten free since 5/12. Accidental gluten ingestion is not something I do on a daily basis or try to do. I am strict as all heck.  I have changed my soap, shampoo, toothpaste, foods, vitamins, etc.  I guess to me "sometimes" means, I've accidentally gotten bit by the gluten bug by something once in a great while over the course of the last 1.5 years.  A lot initially as I was brand new and made my mistakes.  Then, I made more eliminations and restrictions so that I don't even walk down the bread isle at the store.  And I quit wearing make-up.   I do know when I do ingest, what the symptoms are like and how long they last.  Saying it's not typical for me to be in so much pain and different pain for over 6 weeks. I can't even turn over in bed without wincing.  The tender spots all over my body are just crazy.  Totally agree -I also do notice the more I'm gluten-free, the worse symptoms are when you get them.  I tried explaining that to the rheumatologist yesterday.  I totally get what you're trying to say, though.
  4. Have only removed dairy and it didn't make any difference.  I did not try soy.  I don't know what nightshades are.
  5. Well, I've been gluten-free since May 2013 now.  I thought I was getting better.  Basically, yeast infections slowed down, migraines gone.  Get a headache once in a while, but nothing an aspirin can't fix.  Ankle swelling, tingling and cramps gone, anxiety down, as well as a load of other horrible problems.  Oh, and dropped like 30 pounds sitting on my butt eating chips LOL.     About 6 weeks ago things started to take a turn.  Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal.  Well, I started having a stomach ache, then a little burning, some nausea.  My skins was itching like crazy around my belly button and I started getting some "sore" spots.  The inside of the right knee is sooo sore I can barely touch it.  Well, after 2 weeks, it got really bad.  My abdomen blew up pre-diagnosis size - looks like having twins - so swollen - my lymph nodes were swollen to size of marbles and pinching the heck out of me every time I moved.  I cried it hurt so bad finally and hubby made me go to ER.  They were a big disappointment.  Ran tests and sent me home and told me to take tylenol.  Looked at me like I was crazy when giving my symptoms and kept asking when I went to the bathroom last.  It was horrible.  I seen my gyno the next day for the yeast which I had back since this all blew up.  She couldn't find my ovaries I was so swollen.  She touched my chest and I about screamed, which I did earlier this year at the Dr. office, too, in about June or so.  (I went for chest pain).  She, my gyno, also has Celiac and referred me to a rheumatologist.    I had to wait 4 weeks to get in to see the rheumatologist and my GI.  Got both appts. on the same day, which I had yesterday.  I am still a bit swollen since the ER visit and my nodules or nodes are still swollen, but about pea sizes, but still hurt and pinch (6 weeks later).  I have to couch it.  If I do too much, I'm down with pain there.  Rheumatologist didn't know much about Celiac except that it is a bowel disease, so I had to explain the wide array of symptoms associated and I don't know if he believed me.  He did touch me all over and it was sooo painful.  My back, chest, thighs, shoulders, legs, everywhere hurts sooo bad that you can't even touch me.  It was horrible.  He beat me up just pressing on me.  He rubbed over one nodule in my belly still and it was super sore I could have cried, just like the pain I felt when he just only pressed on my thigh.  He said he was running an inflammation test and Lupus test, but didn't expect I have that, but wanted to see what they show anyway.  I can't even cross my ankles because my leg hurts the other one!     Left and went to GI.  He didn't exam me much, Small, belly rub and said he was doing blood work - my Celiac panel and inflammation again - I believe - and scheduled me for a small bowel follow-through, I think it is called - which I have Monday.   So far I only have my Sed Rate test back.  Before gluten-free last year, my Sed Rate was 25.  Yesterday My Sed Rates were 31 in the morning at the rheumatologist office and 29 in the afternoon at the GI clinic.   It's been a long time since I post here or had time to post here.  Couching it today.  I'm just so sore and so tired of hurting.  It's been 6 weeks. I don't know what's going on.  I just know it hurts and I just can't take it anymore.  It's been a real painful long month and a half.  Aww, and today's our anniversary and I can't even barely move.  Just needed to tell someone and vent a bit.  Neither Dr. has called.  I read test results so far online.  Anyone have anything similar?  I'm afraid I thought I found my problem, Celiac, and a cure, gluten-free diet, and now it's just getting worse because, of course, that can't be all that's wrong with me - again.  
  6. Today- water, milk, cocoa pebbles, salad with lettuce, bacon, egg, green onion, radish, gluten-free ranch dressing, cheese. Culvers choc scoops with hot fudge. I was sick to my stomach this morning. Yesterday - cocoa pebbles, mcds fries, cheseburger no bun, gluten-free toffee ice cream. Thursday - omelette with ham, cheesem, mushrooms, onion in galena, il. Wonder roast chicken, gluten-free garlic mashed potatoes in box. Salad. Thursday i was sick as a dog with big D. Wed - cocoa pebbles, fajitas on nachos at restaurant. Tues - banana, tuna, gluten-free lays chips, gluten-free pizza homemadewith gluten-free crust, mozz, mush, sausage, gluten-free sauce.
  7. Weekend Food

    Saturday -bbq chicken on grill, plum, gluten-free brownie, banana, cocoa pebbles, milk, salad, radish, green onion, gluten-free dressing, cheese, gluten-free ice cream, asaragus Sunday - gluten-free brownie, banana, quiche, eggs, spinach, bacon, cheese, dijon mustard, salt, pepper, asparagus, polishes Friday - brats, lays bbq stacks, cauliflower, broccoli, banana, chicken soup, chicken, carrot, green onion, mushrooms
  8. Bit Better Today But Oh So Tired

    Today my itchy belly and sore back are gone. Breakfast - banana Lunch - homemeade chicken soup - chicken mushrooms celery carrots Banana Supper - nachos - tortilla chips refreied beans hamburger sour cream, fresh onion, gluten-free salsa, mexican cheese. Went kayaking but couldnt paddle far. Got too tired too quick. Walked 1.3 miles. Got anxiety. Always do when i get hot or tired. Charlie horse in left calve that never happens. Could fall asleep now. Must exhausted and have been all day.
  9. Itching With Gluten Intolerance

    This is totally killing me right now. Right side upper quadrant itches like mad with nothing there, but also hurts inside. It's driving me mad today. Found an old topic on that same thing.
  10. Okay, Figured The Blog Out.

    Today I decided I have to start keeping track of what I eat and what is happening with my body so I can go back and make decisions about what I ate and any reactions that may have been caused by certain foods. After going gluten-free initially, I felt great for about 3 or 4 days and then I felt like I ran into a brick wall and was totally exhausted for day, but also had insomnia as well. That passed and I now realize that one day I feel great and the next day mediocre and the next day terrible and then next day great, etc. etc. Therefore, the need for the food diary. I also think I have DH and have for awhile and never realized it. It only makes sense that my Celiac is atypical and my DH could be, too. I think I've been having a minimal outbreak for the last 9 years. Ouch. I know because I get outbreak and the top comes off the bump and it's not a pimple. It's just an open sore and oozy, icky. I get it just above the genital area, my chest, back, buttocks, neck, and belly. It is most worse on my neck - larger bumps and more yucky, but fewer and far between in the lower area. I read on here to get rid of Iodine in your diet meaning salt, chips, and asparagus? Which I have been eating like crazy lately (lays chipping dipping into tuna fish according to a recommendation on here from someone else for a lunch). Now something else I can't have! ARGH!! I have to cut it out of my diet to see if the rashes/bumps clear up. I'm running out of lunch ideas.... I am also cutting eggs out of my diet, which totally sucks because I like eggs in tuna fish and for breakfast, but I remembered I took a food allergy test last year and it showed me borderline for egg whites. Maybe that's why my bloating will not go down at all? Not sure. Just removing to see if there is a difference. I read if you're borderline you can have the food once a week, but not more than that? Maybe I have egg once a week? I have no idea. I'm so new to this thing and I am pretty much totally lost and no Dr. has any information for you. Another ARGH! How I feel today? Like crap. I am very tired. I have a pain that runs across my lower back in a straight line and hurts like heck if I even move all the way across. Feel like severe bruising or really deep back pain. I have a circular spot on my belly right now on my right side of the belly button in a slightly upper position that just hurts! If I look straight down it's my right upper quadrant area of the stomach/belly button position. One, it hurts like nerve endings are touching my skin. I felt this same feeling after my hysterectomy in Jan. 2010. I recognize it. It also itches like crazy and there is nothing there. I almost want to cry when I move. What is this? If I push in there I feel something hard and that hurts. No idea. I've already had CT scans and everything so I know nothing's in there, but what in the world is going on???? I have one bad sore I noticed yesterday in the lower area and my neck broke out over the weekend really bad. What I ate today: Breakfast - banana, coffee, cane sugar, creamer Lunch - Lays chips and sloppy joe (hamburger and gluten free sloppy joe sauce) Dinner - 4 cheese italian sausage made fresh at our grocers meat department, cauliflower and broccoli with cheese, potatoes with butter - onion- and steak salt seasoning Spice Classic which I can find no info on. Someone else here posted asking but it was never answered. It is made by McCormick I found out and they label all their stuff, so I am guess it's okay. I hope... Yesterday Breakfast - 1/2 grapefruit, blueberries, coffee w/ creamer and cane suger Lunch - tuna with gluten-free mayo and dill pickle pieces (oops, I never checked pickles. Can I have those?), lays chips Supper - Apple brats fresh from grocers meat dept, broccoli with cheese (I steam the veggies), potatoes - butter(real) - onion - steak salt (I made double stuff and we ate for two days) Meat was cooked on the grill. The day before, I can't remember. I had 1/2 grapefruit for breakfast What I can remember from the weekend: Friday night we went out to eat at a dinner for business. The waiter was great with my order and owner knew to keep everything separate, etc. they were all cool with it. I emailed them ahead of time and planned on me being there. It was a Mexican place, I had fajita with no seasoning and no tortilla as suggested by owner. I ate corn tortilla chips with no salsa while I waited. I cooked steak on the grill - same steak seasoning salt. Had salad with gluten-free dresing, fresh onion, radish, sprinkle of cheese, pepper and potatoes with button and onion I had bacon and cheddar hamburgers for supper with same salad as above (burgers made fresh in grocers meat dept) and all meat gluten-free hot dogs. we ate those for two days (I think Sunday and Monday night) Had Steak on Saturday and Mexican on Friday for suppers. I know I ate left over steak dinner from Sat. night for lunch on Sunday. I skipped breakfast. I had no food here I could eat on Sunday for breakfast. I had gluten-free chocolate free mousse for dessert last night. I had an orange and an apricot other nights. That's the best I can catch myself up to speed. Now to do this everyday so I can watch for patterns. *sigh*
  11. Nothing helps me yet either. My belly looks 7 months pregnant and the top half above my belly button even sticks out farther than the bottom half sometimes. I haven't worn jeans in months. Argh!
  12. Thank you for all the wonderful responses! I was afraid of putting him through and the biopsy coming back negative. I guess I don't know it will. Just seems I showed so late in life at 38 and my IGA was 1 point over at this age. I just felt if blood work was negative at this point, endo probably would be, too, although I am just assuming. I like the idea of talking to the Dr. about diagnosing based on trial diet. I think I will do that. I understand about confirming so they don't deviate from diet and to get an official diagnosis. Just keep thinking he'll take after mom and it won't really show until later. He just has a lot of things going on that have been unexplained and confusing to even our Dr. and this may be our answer. I'll keep you posted on how it goes. Thank you all so much!!!
  13. I just recently went to Cold Stone over the weekend. They got a clean scooper and made mine in the back from a brand new tub in a plastic bowl. You can also get ice cream in the store. I've been getting Edys or Blue Bunny - their websites say which ones are gluten free which pretty much anything that doesn't have cookie or malt in it.
  14. Thank you so much for those responses. I just want to be a good mom and make the best choices! This is a hard one. My gut feeling tells me to get him off it and every time I don't listen to the little voice in head, I regret it. I talked to him about it and he said he wants to go gluten-free (after this box of cookies, of course!) So, I think we are just going ahead with it. Personally, I think he is hoping he will bulk up for wrestling since he's so skinny! I would like to see some symptoms disappear. Time will tell. He's old enough to help make this choice. That you for your guidance.
  15. Has anyone had a child with a negative result, but who was actually positive or became positive later? Still looking for an answer from someone with experience who dealt with negative testing, but a lot of symptoms with no answers. Did your negative blood work stand strong and your child ended up fine? Did they really have it? What are the chances of positive endoscopy and negative blood work? Would you do endo if your blood work was negative and your child had symptoms like my child? Would you put them on the diet anyway because of all the problems? Would you not due to the blood work being negative? I don't know how often this happens. I don't know the stats. I don't know what others have done and regret doing or not doing now that they know what they know. I am brand new to this. I don't know what to do. I need guidance, please. Help.