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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 waitingtopounce

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  1. My Story Thus Far

    Wow, nice to know I'm not alone As far as changing doc's is concerned: I'm in the middle of trying to do that, but everyone keeps telling me that I need to see one GI first before switching to a new one. And since we haven't had an official visit we've only had phone chain interactions via his nurse, I need to keep my current GI until we meet Wednesday. Once that happens I can decide to take my files up to the bigger city. I already am trying to get my files from my clinic from my general physician and transfer them to a new physician since she had me doing the run around. But even that is turning out to be a mess because everyone wants to keep the same players in the game. STUPID. I don't want the same players in the game. I want a new team. It is definitely nice to finally have something to grab on to. I'm still struggling with the inner battle of "am I just self-diagnosing? is this really what I have?" but this just makes too much sense. I can't see how I would have anything else. Every other time I've thought it might be something else i still had doubts in my mind of "well i don't have that symptom...or that one...and that one doesn't happen often" but with this, the symptom list and your guy's testimonies it's like "yup, yup, yup, that too, that all the time, yes, oh yeah, ugh yeah that too, man you too?" My mom and I started looking at my brother and my two sisters for symptoms as well as my dad. My dad has recently gone vegan and mostly gluten free (he sometimes has crutons on a salad). Since that his eczema has gone away, he's been able to finally lose weight because he's not hungry all the time, he has energy to do things after work, he's sleeping better, his stomach doesn't feel like he has acid reflux or ulcers, and he feels "amazing". My mom is now going to watch and see how he feels when he does eat the crutons. See if he gets a stomach ache with that. He has really bad anxiety. And definitely has anger/irritability issues. Oh and lactose intolerance. My little sis and bro have DH. No doubt about it. All over their elbows back and necks. Really bad stomach problems, joint aches, muscle problems and gas for both of them. Both have bad anxiety and depression. My older sis loses weight at the skip of a beat and has now had 2 miscarriages late in the first trimester. She is tired all the time, has crazy mood swings, and bad depression issues. She has anger/irritability issues. She also has dry skin problems like me, not DH but more eczema like me and my dad. Bone aches and possible early osteoporosis. With all of this, it's really hard to go: oh ok, so all of us are just crazy and none of us have celiac. I think I need to have the celiac gene tested. Then maybe they'll all take me more seriously. I guess I also haven't told them about my family... That might help. But none of them are officially diagnosed. Anyway. I'm rambling. Thanks for all the support guys. -C
  2. Ouch!

    Thank you all so much! The oatmeal makes so much sense now that I think about the last few days.. so does the soy yogurt though.. I eat them mixed together. I'll cut both out and see what happens You guys are the best! It's nice to feel like I'm not alone with all of this. Especially when my doctor's are making me feel like I'm a crazy person for thinking I'm sick at all...
  3. Ouch!

    Okay, I REALLY don't know what I ate this time that is causing this... In the last hour I had: Strawberry WholeSoy Yogurt (Lactose and Casein Free, Gluten Free, Whey Free) Bob's Red Mill Gluten Free Oats Handful of Walnuts Kale (red and green) Salad w/ Mary's gone crackers original crackers (vegan & gluten free) daiya "mozzarella cheese" (gluten, soy, casein, whey, lactose free) Organicville Sundried tomato & Garlic vinaigrette (gluten free and vegan) Mixed shredded salad veggies (pre-packaged carrots, cabbage, and broccoli slaw) I AM IN KEEL OVER AND POP OUT A GLUTEN BABY PAIN! Is it the soy? What else could it be?
  4. Thank you Chiana! See I thought so... I am going to print that off and bring it to my doc... it only make sense that they did it wrong. I really hope more people answer the poll... I think it's really interesting. I guess it would have been better to put it on the other discussion site? The post-diagnosis one?
  5. Negative blood test. This is my second negative. First was after I hadn't been able to eat for weeks. Second was after I was on a gluten free diet for 1.5 weeks and had previously been unable to eat much for weeks, but had a few gluten moments to make me feel like crap, including thanksgiving. I need an FMLA because I am out of leave. My GI now can't see me until next Wednesday. I would like to just get the ball rolling by having them schedule a colonoscopy and endoscopy NOW so this gets moving quicker, so I can take less time off from work in the long run. I would also like to know if eating just little bits of gluten wouldn't be enough to affect my blood results but would be enough to make me feel like I'm about to keel over and die. Let me know if you have had similar experiences.
  6. My Story Thus Far

    That's good to know. Thanks ravenwoodglass!
  7. Possible Positive?

    Please let us know how it turns out! I'm a newbie too and waiting to get diagnosed! Good luck!
  8. Deciphering Doctor Intentions

    Well I fasted and ended up passing out while they took my blood and had to be held in the ER while they filled me up with an IV and decided whether or not to scope me right then and there. It was just oh so fun. I was supposed to be fasting, so at least I followed directions. They aren't winning any points with me. I am seriously considering driving the extra hour and a half to get better care from a larger hospital in a larger city.
  9. The reason why I am trying to get someone to say it's "official" for me is so that I can have a document for my FMLA at work. This whole thing has already made me use up my sick and personal leave this year and me and my husband had taken a big trip in the beginning of the summer before all of this started to get really bad. I don't want to end up in this situation again, so I want to make sure I have an FMLA on file that states I have a chronic condition. That's my 2 cents. Now I just have to figure out how to get the doctor's to actually follow the correct procedure's testing wise.
  10. Where to start... Let's just go with a timeline eh? Age Symptoms 0-10 Constant doctor's visits for stomach problems, no diagnosis 11-15 Constantly sick, pneumonia, bronchitis, strep, and first menstrual period lasted for 36 days STRAIGHT. 16-18 Depression, anxiety gets worse, eczema, weight gain, bloating, stomach problems return. Dx with ulcers. 19 Mono w/ all complications. Severe depression. Multiple cases of UTIs and yeast infections. Fatigue sets in for good. Tentatively Dx with IBS. 20 Go tentatively vegan, start to see positive changes in energy, begin to realize that I need to be careful with dairy. First shoulder surgery. 21 Second shoulder surgery. Officially go vegan for a while. Depression and anxiety worsen (more pasta and breads in diet due to new boyfriend/soon to be husband) 22-23 Car accident, neck muscle tear, Third shoulder surgery, and wisdom teeth out. Nerve damage in forearm - no determined cause. Sleep problems worsen. Start therapy. Dx with heat exhaustion. 24 Determine that I am lactose intolerant. Dx with GAD, PTSD, and associated depression. Dx with cold sores and ulcers. Dx with heat exhaustion. 25 Put on higher dosages of the medications I had been taking since 23 for GAD, PTSD, Depression, sleep disorder, ulcers, cold sores, allergies, and nasal congestion. Dx with dehydration. Dx with B12 overdose. Dx with Gastritis. Dx with Vitamin D deficiency and mono. Sent in to get testing done for fatigue and cause for mono to come back. Sent to check for appendicitis. Negative blood work on malnutrition and tTGA. Sent to see specialist. It's ridiculous. I've lost weight fast and feel like crap and no one seems to care. It's like they all think I'm crazy. Doesn't matter apparently that they took the blood test for the tTGA screening a week and a half into the gluten free diet. Or that they haven't done a colonoscopy, scope, or biopsy. Apparently a CT to look at the appendix and the rest of the organs is enough to tell everyone that I just have constipation. Nothing to worry about. She's just crazy folks! No big deal. She just needs to take some miralax and she'll be just peachy keen. Oh a doctor's note for your boss? Pssh. You don't need that. You should be perfectly healthy according to all of OUR tests. We have no clue why you are keeling over in pain, practically fainting from dizziness and can't stay awake to save your life. Maybe you should drink more water. Grr. -Cayse
  11. Okay so I posted earlier about needing to see a specialist. I got in with one, but not until Wednesday. I decided to call the clinic and see if I should go in for any labs before hand just to get the ball rolling. They ignored my call at first then called me back and asked why I thought I needed more labs (yay for new doctor's actually caring), I explained my new symptoms and they immediately ordered a slew of tests. They transferred me to the lab to set up appointments for tomorrow before the lab closed. They didn't give ME a list of all the labs they were ordering. Talked to the lab person and she gave me an appointment for tomorrow morning and told me I could fast "if i wanted to" ??? She said that the doctor was still putting in lab orders and that she couldn't see all of the ones that he wanted. My big question is that they could be ordering an Endoscopy that quickly could they? I mean I would have to sign papers and things right? So i shouldn't worry about trying to eat gluten before hand or anything? Anybody have any insight
  12. Help!

    Thank you for responding ravenwoodglass! I called them this morning about it and they discussed, put me on hold, said they'd call back. I called back asking if I should make an appointment, they then said yes you need to be seen today. I am sitting here waiting to go to my doctor's appointment. I really wish I would have just gone in to the hospital. I think I want new tests done. Cause she wasn't looking for celiac when this whole thing started. I had vitamin D deficiency and mono. I was still tired and fatigued after 8 weeks of vit D treatment so did a full blood panel to check for anything she could think of. I still HAD mono and I still had no appetite so i was eating basically nothing. The test came back negative for gluten intolerance (big surprise) but i still never got better. She decided to see how i felt by going on a 2 week gluten free diet. Everything I've read says that she's doing everything wrong. And with me losing weight the way I am I really want to just say "ok, i have celiac, now lets focus on confirming malabsorption so you can figure out exactly how deficient I am in everything right now so we can fix it." I just want to fix it. I can't keep taking time off of work to be going through medical tests.
  13. I am new to this site and new to the concept that I have celiac disease. If that is actually what I have. Which I pretty much am convinced it is because it explains my ENTIRE childhood, adolescence and adulthood. A normal person doesn't go to the doctor with "nothing wrong" that many times... Anyway. I am dropping weight like crazy (without trying), passed a white stool and have been passing really light colored stools lately, have severe constipation, really bad stomach cramping and i'm only halfway through my 2 week gluten free test. The gluten free diet made a drastic impact on my brain function and fatigue, but as far as the rest of the symptoms and my malnutrition not going away... I feel like they should be doing something...or watching be closer, especially since i'm still dropping weight and the white stool is a new symptom. I don't know what to do to have them land on a diagnosis and take this seriously. I feel like crap and i'm worried that I've done permanent damage to something in there. I need a referral to a specialist but my normal docs don't seem to think any of this is a big deal. I don't see how just eliminating gluten from my diet is going to fix things malnutrition wise. Shouldn't they be doing something else?????