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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 Tracy0504

    • Rank
      New Community Member
    • Birthday 05/04/1968

    Profile Information

    • Gender Female
    • Interests When I'm not sick? Hiking, biking, writing, music, cooking, baking, spending time with friends. When I'm sick? Nothing. :(
    • Location Virginia

    Tracy0504's Activity

    1. Tracy0504 added a post in a topic How Long Does It Take? Calling All Celiac And Dh Sufferers!   

      Wow, you sound like me with the doctor thing (and we're not alone).

      I also gave up gluten almost three weeks ago. I've been without dairy products for 2 weeks. Am I better? Maybe a tiny, tiny bit but my list of symptoms is long. At least one thing (the numb feeling in my left hand and left foot) have gotten worse.

      I too, am becoming discouraged because I'm not magically better all of a sudden. Maybe I read too many success stories of people feeling better "immediately" or the next week, etc.

      I also kind of feel defeated when I see people saying it may take months to feel better and years to completely heal -- but then I think of the alternative - not getting better at ALL. And if it takes months for me to come out of this feeling well enough to enjoy life again, then it will all have been worth it.

      Not sure if that helps you or not since we're in the same boat, but let's stick with it a few more months and see where it takes us.
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    2. Tracy0504 added a post in a topic New Here   

      Thank you, all.

      Feeling this bad is ... well, bad enough. Then I have the related stress (dealing with doctors, my job, etc.) on top of it all. So your replies are appreciated more than you know.

      Regarding testing, I feel like I'm in a Catch-22 with the doctor (and if you can tell, I have little or no faith in the medical "community" at this point.

      I can't actually talk to my doctor (just voice mail and then MAYBE I can get a clueless nurse to call me back). I'm two weeks into being gluten-free. I could leave a message saying I want to be tested for gluten but no guarantee they'll call me back. I could start eating gluten again in the hopes they'll test me on Friday (the 4th) but honestly? I'm afraid if I do that, I either won't be tested or I WILL be tested and the tests will show negative results either due to lab error, false negative or because I've been off of gluten. Then I'll be right back where I started. I've read too many stories of people not being tested or testing negative and their health turned around after awhile on the diet. Not knowing and two weeks of gluten-free down the drain and just annoying the doctor further (I feel like I have to bow down to her since I will most likely need her to submit FMLA paperwork). This is a very small town. Any doctor here is part of the same health system. If I lived in a larger area, I would be on my third office by now.

      Someone else on another board mentioned that if you are tested for celiac or gluten and it's determined you DO have it, you then have a pre-existing condition on your record so good luck with health insurance in the future. If there were treatment for celiac/gluten beyond the strict diet, I'd really want to be tested. I kind of still do, but I guess at this point, I don't see the benefit (other than proving to doctors that I'm right).

      With all I've read about gluten in the past few weeks, I honestly don't think I want that stuff in my body no matter what my health issues are. And "worst case scenario" if I do end up having some other autoimmune disease, or other illness, gluten-free will most likely only help to have a smoother ride.

      I tossed and turned all night (I was awake more than asleep) and several times I almost thought I was having a heart attack my heart was thumping so much. I work from home doing tech support for a major company (which is a blessing) but I can't keep calling off. Then again I can't work with my focus completely gone and feeling every day like I'm in someone else's body. You have to be pretty sick to not be able to sit and answer the phone and enter information, you know? No one knows just how stressed I am at feeling so bad. I immediately checked this board to see if anyone had replied and You made me feel a bit better. Thank you.
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    3. Tracy0504 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      New Here
      Sorry this is so long. Just some back story:

      I'm 43 years old and single. Last March, I had to vacate a rental house due to mold and air quality issues. I knew my illness was caused by mold. My friends knew it was mold. Doctors, however, sent me on a wild goose chase that ultimately ended in nothing but my being left with a ton of medical bills. My symptoms were spot-on (no pun intended) with mold sickness (fatigue, weakness, leg tingling, nausea, upper respiratory issues). But docs seem to think mold is imaginary.

      When all was said and done, I'd gone to more than one general practitioner, had one ER visit, two Neuro visits, two allergist visits, two CT scans, two MRIs, a sleep study and a myriad of other tests and visits. On the first MRI, a non-specific lesion was found in my frontal lobe. The first neuro brought up the possibility of Multiple Sclerosis that sent me into a tailspin (anxiety wise) and I went to two eye doctors to see if they detected optic issues (no). The neuro then sent me to a nerve study test which was the equivalent of being electrocuted for six hours. And guess what? Results were labeled "inconclusive." Another doctor turned around and acted like I was insane and put me on klonopin (that only made me sicker -- I don't do drugs well). Eventually, with time, on my own, I began to feel better. I went for a follow up neuro last November that showed no change in the lesion. The neuro shrugged his shoulders and said, "Could be MS, could be a brain tumor. Could be nothing. Wait and see." and dismissed me. Wow.

      I never fully recovered (probably 80% recovered) but I felt good enough to return to work, the gym, etc. Even so, I started gaining weight without any explanation. In May I wrenched something in my neck badly enough that I was unable to turn my head to the left and if I did, I'd get serious headaches. The tingling in my foot came back. I went to the doctor (same office, different person) who immediately said, "I think you need to go see a neurosurgeon based on my previous MRI results." WHAAT? I declined (120 miles round trip and a huge co pay). She gave me anti inflammatories, which helped, but I never regained full mobility of my neck. My job, by the way, is seriously stressful (most of what I field are complaints) and requires me to sit for 10 hours a day and stare at a computer screen.. That's not helping my neck. The weight gain and all the sitting aren't helping my back. So "some" of this makes sense.

      The fatigue started to return about two months ago. Along with it, water retention (for some reason my left leg swells and not my right), the tingling got worse, constipation (a life long issue with me) got worse. Insomnia (again, life long - I currently take Lunesta which doesn't do much) got worse. Sinus issues, worse. Well, you get the idea. Worse yet, I recently got on the scale to discover I'd gained FIFTY pounds since last year. !!!!!!

      I made a doctor appointment and since you can only present one or two issues at each 10 minute doctor visit (and I had to wait two weeks to GET the visit), I mentioned a few symptoms and asked for my thyroid to be tested. She suggested a full blood panel (fine) and a future gyne visit (WHAAT?). It took three different girls to draw my blood (one even blew one of my veins). A week and a half later I was called and told the Vitamin D test they sent out showed I'm low (no big shocker since I spend so much time indoors), but my "blood wouldn't work" for the rest of the tests (I took that to mean the lab screwed up). She added, "Since you had an MRI last year you should probably have another one." It's like no matter what I'm seen for there, they're hell-bent on me traveling 120 miles and forking out a $50 co pay. I declined and went to another office.

      At the second office, I saw a nurse practitioner and made the mistake of mentioning the insomnia and weight gain first (I've since learned that in a 10 minute visit, you're only listened to for 20 seconds and they're only listening for key words anyway -- and once they hear certain key words, you're done). She ordered the blood tests (everything "normal") but wanted to put me on an anti-seizure drug (??) that would calm my mind and has the side effect of weight loss. I declined.

      In the past few weeks, the fatigue and tingling has gotten much worse. I started researching stuff online (funny how doctors hate that we do that but then again they're the ones who force us to). I was shocked to find post after post, site after site, listing my symptoms -- but attributed to gluten issues. Even on one post, the guy angrily said something about his "brain lesion" and my mouth literally dropped open. Wait. There's a connection? More research from me. Reading so much of this gluten stuff (much of it on this site), I feel like I'm maybe on to something. But I'm not sure.

      I was a sickly child and have always had allergies (and I remember not being able to have corn products for awhile there). As I mention, I've had constipation for years (chronic -- like needing laxative or enema products on a daily basis). I'm amazed when other people say they've been constipated for days. HOW? When I'm constipated I get a fever, headaches, face pain, fatigue you name it. I went gluten-free about a week ago. A few days ago, I figured I may as well just do an elimination diet while I'm at it, also removing corn, soy, dairy, Aspartame and eggs from my diet. The good news? I lost 6 pounds (probably water weight since the face swelling is less). The bad news ? I feel much worse.

      My symptoms (again, some are now worse since going gluten-free):

      Severe fatigue and very tired even after sleeping.
      Severe brain fog (the kind where you can't focus your eyes or think).
      Dull headache
      Joint pain (mostly in knees and fingers).
      Left ankle and foot tingling
      A pinching feeling in the back of my left knee
      Neck and lower back ache.
      Occasional random muscle aches but not severe
      A slight burning or tingling feeling in my left hand (although since I hurt my neck I prop my head on my left hand all the time).
      This is all bad enough I've had to take a few days from work in the past month and my days off are spent in bed.

      Two days ago, I called the first doctor's office back and made a follow up appointment (the soonest they can see me is Nov 4). You can't talk to a nurse or a doctor ever (they're like the Wizard of Oz) so I left a message stating that I honestly think I have more than one thing going on here (back issues, stress and anxiety, and nutritional issues - maybe even pre menopausal). I stated, "You suggested a follow up MRI. Let's go ahead and get that scheduled so we can rule out anything there. I figured they'd get the MRI done and on the Nov 4th appointment I could present what I learned about wheat and gluten and ask for any direction on that. However, they decided to ignore everything I said and instead left a voice mail stating they want me to just go and see a neuro 60 miles away since this may be MS. And they left the message end of the day on Friday (yesterday) when I couldn't call them back. Dismissed again.

      I feel more alone than ever. I don't fit the MS profile (except for having tingling, fatigue and a non-specific brain lesion). I don't fit the Fibrro profile. If it's Gluten or some other allergen, wouldn't I feel better and not worse now? And beyond that, doesn't a gluten-free diet make even MS and Fibro sufferers feel better? I feel like I've been hit by a truck.

      I'm at the end of my rope. Add severe depression and anxiety to that long list above. I am all that I have. I can't be sick. I can't miss work. There's no one to take care of me. I just want doctors to find out what's wrong so whatever it is, they can treat me and I can at least have some quality of life. Gone are the days when they just admit you for 24 hours and run all the tests and then come up with a plan. Now they either drag it out or send you somewhere else like they hope you'll just go away. Meanwhile I'm here, barely able to function.

      Friends hear me but in response they say stuff like, "Hang in there." or "Good luck" or (worse) "You have the WORST LUCK with medical stuff." I feel like I don't even belong on this board but I have nowhere to turn. I guess I just wanted someone to listen.
      • 5 replies

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