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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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About DreamWalker

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  1. Confused.

    I'm sorry I never followed up on this. It's happened two other times that I remember since posting. Um... I mentioned it to the resident during my last GI appointment ... So far no one seems to think it's much. In all reality, I wouldn't be surprised if it was nothing more than exhaustion. Although, it might be high blood sugar. I know I fall asleep on my floor if it spikes yet that was mainly due to reactions to various meds I was placed on for pain (TCAs/amytriptiline, nortriptiline, and remeron). They kept insisting it was hypotension and would try me on a different medication but I noticed whenever I passed out (this wasn't falling asleep - I was standing then crashed) it was after eating sugary foods, which I all but eliminated years ago. When I tested my blood sugar it was 373 mg/dl and a few other times it was 294, 264, and 210's. Yet, it normalizes and heads down into the 120s if I haven't eaten for a day or so (eating is very painful). I went to my GP about it and he did a random stick test. It came up 124 - which is good. And I told him I had been in too much pain lately to eat so he knew I was fasting. That was months ago and I haven't taken a TCA or Remeron since September - apparently high blood sugar is a side effect. I'm clueless about diabetic issues but perhaps it's normal for someone's levels to rise so high shortly after eating sugary foods? That will make me very sleepy. Um. I've had a couple seizures in the past but I was rather dehydrated. My electrolytes were probably way out of whack. But I truly am exhausted. I think it's just from the year and a half of pain and vomiting - both of which have been waking me up from sleep this entire time. In June, 4-5 hours was the maximum amount of time I could sleep without bolting awake from pain. Periodically, I still wake up vomiting yet I'm prescribed Zofran on a steady basis and the pain is position oriented. My body must have trained itself to remain still, in a safe position when I sleep because I've been managing to sleep a decent amount lately. Thank you all for replying. I'll bring it up during my appointment this week. I need to head in for insurance stuff..... Out of curiosity, if he thinks this is something more than tiredness, what should I expect? My medical bills are becoming a larger debt than student loans. Well, that, and doesn't it seem a bit extreme? Sorry. I'm a chronic pain patient and am always scared of mentioning unrelated health issues or ones that sound too far out there. . . I'm not on any medication so that wasn't the cause. Yet, I need something, anything that might alleviate the pain. I can't live off my savings much longer. And after spending six months isolated on my floor - I really, really, need help in order to function. I simply can't live like this anymore. Sorry this went so far off topic. When I wrote that initial post, it was the first time I'd slept over thirty hours straight and was confused and hadn't thought things through.
  2. Confused.

    So, this is really weird. Before going gluten-free, I had several friends think I had narcolepsy as I'd frequently fall asleep without warning. It's been over a year since the gluten-free diet and this issue virtually disappeared. On Saturday, I ate a new brand of rice cereal (which I highly suspect of containing gluten) and fell asleep at my computer. I woke up the next day on my floor rather confused. Then, on Sunday I went to bed and I woke up a little before four a.m. because I had to pee sooooo bad. At first, I intended to head back to bed yet I noticed my email (my computer is usually left on) had a copious amount of unread messages - which doesn't make sense given that I had checked it before bed on Sunday and that only my school & parent regularly email me. When I checked the clock, it said it was TUESDAY morning. I must have been asleep for 30+ hours, as I remember feeling as though I should head to bed early on Sunday given that I had a lot to do Monday. (ooops). Aside from being dizzy, famished, and really confused I'm fine. Although, if I let myself, I could truly go straight back to bed - I'm that tired. I found a source for CC (no question - wheat crumbs) but could gluten truly have this effect?
  3. Kombucha Tea

    I used to adore kombucha yet I can't drink it anymore as it causes a lot of sharp, burning pain. The only explanation I can think of is that the tiny amounts of alcohol from fermentation set my pancreas off. Then again, pedialyte or even water can anger it. My guts definitely miss kombucha but it just isn't worth the pain (or price). Anyone else with this issue?
  4. I've had two pre-gluten free eras. The first one I don't remember well yet I was 65lbs and around 5ft. The second time I was in the mid-to-high eighties at 5ft 2in. (I think. The weight loss disturbed me so I quit stepping on the scale.) And the most bizarre thing about it was my appetite was absurd. I would eat entire jars of nut butter in one sitting. Once I calculated how many calories I was eating on average per day and it was around 4,000. This was never abnormal for me yet I was usually around 110 to 115 lbs. I was diagnosed with Celiac Disease yet I recently found out that during my EGD they didn't take any biopsies. Now I'm just confused but given how sick I become from mere cross contamination, I doubt the diagnosis was wrong. Plus, I went from ~87lbs to 107 lbs on the gluten free diet. Now, I'm dropping weight again yet it's due to ongoing non-celiac related GI issues. Anyway, sunflower butter was my life saver. Although, to this day, I can't keep nut butter in the house - I'll eat the whole jar. (I'm perpetually hungry.) Sunflower butter is delicious on just about everything - corn or rice cakes, bananas. Almond butter mixed with maple syrup on gluten-free pancakes or waffles is heavenly. Check out Enjoy Life Foods - they have the most amazing gluten, soy, dairy, free foods that are rather high in calories.
  5. I bought a box of this last night and after eating a few bowls, I fell asleep on my floor. Anyhow, thirteen hours later I woke up and was slightly confused as to why it was nine a.m. Also, my fingers are pretty swollen. Weird. My usual reaction to gluten includes mouth sores, diarrhea, falling asleep (even if I am in the middle of a conversation), and the usual stomach pangs. I also get really bloated yet I'm having pancreas issues which cause my stomach to swell. I'll call tomorrow and ask Safeway if their Oven Toasted Rice Cereal is 100% gluten free but in the meantime I'm a bit curious. It says Gluten Free on the packaging and there's no warning regarding shared facilities. Also, I used Light Silk Soy Milk and I usually drink almond. (It was on sale.) However, I've had Silk Soy Milk before and it definitely didn't have this effect.
  6. I definitely had the brain fog issue. Also, look into your Vitamin B levels. Skye - have you looked into other intolerances in addition to gluten as well? Particularly casein/milk protein? Your post reminds me of a friend of mine with IBS, fibro, and idiopathic seizures that are not controlled with anti-epileptics.
  7. Chronic Pancreatitis. At least I have my answer. I look like a skeleton and I've pretty much been living on my floor this entire time yet at least it's no longer a mystery. . . and I don't feel like a loony hypochondriac. Thank you for the link Generic. Did you ever managed to try the pancreatic enzymes? CP in its more advanced stages is difficult to detect as blood tests wind up returning normal as your pancreas degenerates. I had issues with my insurance covering them as well yet my GI wound up giving me several boxes of samples and each came with a free RX card. All I have to do is activate it and I have a month's supply at my fingertips.
  8. Are you sure your drink wasn't spiked? The way you described the feeling as though alcohol stayed in your system parallels a description of a GHB-laced drink. Over two years ago (well before I was gluten-free), I had 1.5 glasses of wine & I remember nothing of that night or well into the following day. I was sitting on the couch watching Malcom & the Middle episodes & I remember x to my right on the chair & y pouring drinks in the kitchen - then blank. I never finished my 2nd glass of wine. I felt drunk for days following & my pupils were ridiculous. (One was huge while the other was the size of a needle point.) I'm not sure if that lasted or I just happened to glance in the mirror on my way back from the bathroom to collapse back in bed. (My bedroom used to be connected to the bathroom like one room.) Anyhow, I did some investigating & discovered the bottle of wine had been spiked with GHB. As for post-gluten-free alcohol tolerance, I'm not sure. I never really recouped enough to have a desire to drink (fear of worsening stomach issues) and I started the gluten free diet at 21. About a month ago, I tried drinking a solitary drink (gin & tonic) & it threw my body into insane amounts of sharp, burning pain. Um.... I don't think I'll try drinking again. (I used to be rather capable of holding my own though.) When I was undergoing testing for Celiac Disease, a doctor at STANFORD University told me there was only one Celiac antibody & that regardless of the gluten free diet - it never goes away. "You either have it or don't." She also said that my Vit D deficiency could not be a symptom of or related to Celiac Disease. My point is, you can find some doosies at supposedly renowned institutions. I've had periods of time where I was in a situation where I couldn't use my insurance and the free clinics can be a bit more comprehensive than one would think. Obviously, it depends on the doctor. Over the years, I've only been seen at free clinics for asthma-related issues but a doctor there helped me out tremendously by switching my inhaler prescriptions. Anyhow, here is the list of Celiac antibodies they need to test for: Anti-gliadin antibodies (AGA) both IgA and IgG Anti-endomysial antibodies (EMA) - IgA Anti-tissue transglutaminase antibodies (tTG) - IgA Total IgA level. If that list confuses them, ask for the full "Celiac Disease Panel." Sometimes it's called "Celiac Plus." It's a check box on the blood work order form. . . . Errr.... I don't have much faith in the medical community anymore. I hope you start to feel better.
  9. I'm unsure what the GAPS diet is as well. What supplements are you taking exactly? As I'm sure you're well aware, celiacs have issues with absorption. Until you've fully healed, you mightn't be capable of absorbing tablets. I know I'm repeating what MommaGoose said, but it sounds like you need to head back to your doctor to check for deficiencies. You may be supplementing the wrong vitamin.
  10. Heh. Yeah.... I ramble a lot. It's difficult for me to follow a full train of thought. I think it's the sleep deprivation (pain) coupled with anemia. My body went haywire when they removed my gallbladder 3+ months ago. Anyhow perhaps a list will be a bit more organized: - I don't eat dairy or soy. - All the medications are gluten-free. I called the companies themselves. - The doctor told me the bruises were due to my iron-deficient anemia. They're about the size of my hand & dark purple. - As for periods, I'm unsure if I'd know what an abnormal one was. Until the gluten-free diet, I never had a "normal" period. I'd have a 1-2 week space between a few periods then it'd suddenly vanish for 3-4 months. Also, they'd last anywhere from 3-7 days with rare exceptions. About two years ago, I literally had a period (heavy) for a month. I didn't have insurance at the time so I couldn't head in to the doctor. Although, that was an isolated incident & before I was gluten free. My last period lasted around 6 days yet didn't seem out of the ordinary. They come ever 3-6 weeks now. - I had a stool test to check for parasites in July. - Folic acid is in my Vit B supplements. Although, my B12 came back high. The doctor said to cease taking Vit B12 yet I'm exhausted without it. To those who found gluten in their medications this site has a gluten-suspect list yet it's a bit outdated: http://homepage.mac.com/sholland/celiac/GFmedlist.pdf I still check with manufacturers on gluten-free status though. Thank you for reading my rambley posts.
  11. Anyway, I suppose the title explains the gist of my topic. I've been gluten free since the beginning of Oct '08 and all my other vitamin deficiencies have cleared. Actually, my B12 came back too high last time and my calcium & vit D are peachy. However, my ferritin & RBC keep dropping (at least it explains the thigh bruises that will not leave) & my MCV keeps climbing (but I was told this is normal). It was a doctor at student health that wanted to focus in on the MCV but I'm no longer registered so I can't head back in to get her opinion. My GP's sub keeps thinking I'm not taking my supplements yet I am + I'm drinking an iron-infused nutritional shake 3+ times per day. But my iron keeps dropping. I've gone over my diet and if there's hidden gluten it's coming from Merlin's hat. Anyway, my GP isn't back in town for another week & I usually refuse to see subs (far too many bad Dr experiences) so this was a one-time exception. Weird thing is, the sub said I had a hypotensive black-out & thought it was a medication interaction. I doubted it as I've been on this particular med before without issues. Anyway, I had another one (this was weeks ago) after that initial episode. So, obviously, she was mistaken. I looked it up & it seems to correlate with anemia. My GP admits he's stumped but is open to whatever ideas I come up with or referring me to someone who may know what's going on if he knows what type of doctor to refer me to in the first place. I'm on the wait list for a gastro-specialist (ironically, for a completely different issue) & my appt is right around the corner but I'm starting to wonder if this is gastrointestinal-related to start with. For instance, I've been asthmatic since I was a kid & am on spirivia, singulair, pulmicort, xopenex, and zyrtec yet the mucus never leaves - I just stop coughing if I remember to take my scripts. And during my EGD there was diffuse mucus throughout my stomach. Also, when I had my gallbladder removed it turned out to be chronically inflamed (as suspected) yet it too had a mucus problem. (Cholesterolosis/Strawberry gallbladder.) If I weren't absorbing other vitamins, I'd wonder if my gut was just clogged with mucus impeding my ability to absorb iron. Yet, maybe there's something specific about iron I'm unaware of. Once again, no gluten in my life. Any insight or suggestions? Side notes: 1) The issue I've been referred to the specialist for is PCS (postcholecystectomy syndrome). However, my GP said he had never heard a case like mine before yet was very concerned. (I was brought into the doctor by a friend of mine who witnessed an event that I can barely recall.) I'm unsure if that has any relevance. I was considering posting this in my previous thread but it seems to be a separate issue. At least that's what the sub-doc said. 2) With the gluten free diet, I found myself barely needing asthma-medications. However, I caught a mild cold & it was just like the old days - congestion, breathing issues, feeling faint/dizzy (dyspnea), and the chronic, mucusy cough I've had since I was eleven returned.
  12. Listen to Momma Goose. I had the exact same issues. When I discovered my B12 was low, I began supplementing with sublingual Vit B12 3000 mcg 2x per day & found myself able to walk straight(er) lines & hold conversations. Although, my memory is still in the tank. Months later, I began developing the same issues then randomly discovered I was anemic. Hopefully, when my iron levels are upped I'll find myself a social-functioning person again. Anyhow, vitamin deficiencies can throw off your entire system - especially the brain.
  13. At My Wit's End

    I know this sounds a bit extreme (yet your attacks seem to warrant great measures) but have you tried keeping a very detailed journal of what you come into contact with on a daily basis? There does seem to be a connection between the bathroom & the attacks & chemical compounds are sneaky additives not only in food but everything from cleaning supplies to soap. If you find a common ingredient, you may have your answer. As for food, they often share common preservatives. If you suspect it's something you're eating, read all the labels not for gluten (you seem to have a handle on that) but for a shared ingredient. The work reaction might seem completely random but did the "heart burn" start before or after you began eating? (I.e. were you eating in an attempt to assuage the heart burn?) Did you use your inhaler before eating? What type of job do you work? Think about the stuff you come into contact with - even your coworkers perfume. When I ask about the inhaler, I'm not thinking you're allergic to the medication but wondering what it came into contact to before you used it. If it helps any, this is coming from someone diagnosed with multiple allergy syndrome at Mayo Clinic at the age of 5/6. I don't remember my severe reactions that lead to that diagnosis and can only recall one "attack" when I was 19 and from what I heard about my childhood reactions, it didn't mimic the previous symptoms much. (My upper lip swelled to 3x its normal size among a variety of other things. I never identified the cause though. It seemed to be exacerbated by a bacterial infection at the time. I never did solve the puzzle as it wasn't a persistent issue.) Although, my allergies are almost exclusively centered around antibiotics. Yet, I found metals cause me to break out in hives. (Necklaces, numerous face creams.) As for medications, has your doctor discussed an epipen? And Benadryl is... well useless (at least for me) and according to the email I received it may or may not be gluten free. I found Hydroxyzine Pamoate far more effective. Although, I don't think it'd stop such a severe reaction. Another thing you may want to take into account is seeing a specialist/immunologist. Ironically, I never sought a specialist for the allergies but was referred to one for unresponsive asthma & she was the only doctor (pre-gluten free diet) who managed to get the asthma under control. And she documented the allergies so thoroughly that even though I'm currently having a completely separate health issue, it's her documentation that's saving my butt in school. (It's a long story that doesn't belong here.) I hope you figure this out. I know what it feels like to be at your wits end with health issues. I always felt lucky having the allergy issues sorted out & being diagnosed so young as even if doctors wrote it off I don't remember and the whole matter is simply second nature to me. Try to remember you're not alone.
  14. Generic, I'm so sorry. Your story .... I don't understand what's wrong with the medical community. That is one of the most horrendous things I've heard. It really is. I can't believe a stone was lodged for four months and no one believed you. (I mean, I believe you I'm just ... speechless... at how cold doctors can be.) Lisa - I've heard of exactly what you're describing in undiagnosed celiacs who have their gallbladders removed. It's why I waited to have mine taken out. I did have it on June 1st of this year. Yet, I don't have diarrhea or any of the symptoms you're describing. The only time I threw up bile was last summer when I was put on a PPI (proton pump inhibitor). Vomiting bile is what would wake me up in the middle of the night - weirdest thing. I stopped protonix & the vomiting bile issue magically vanished. I'm still in the same position although the vomiting has let up. The pain seems to localize to the left more (exactly like the right where I felt the gallbladder attacks) & it's very sharp. It can reach the point where I have a difficult time catching my breath since inhaling deeply causes sharp, shooting pain. My surgeon told me it was in my head. I convinced my old GI to order an MRCP. The results are still being processed & will hopefully be reviewed by my new GI. . . (Long story about where the old one went. He was actually decent.... ) Desperate barely covers how I'm starting to feel from pain alone. I have a GP now who ordered all my records from the clinic I used to go to. He told me that he'd never heard of a case like mine & didn't even know where to begin. Yet, at least he's doing something..... As for my new GI, he wanted me to return to eating gluten so I could have a biopsy confirmed diagnosis. . .. um... no.... I'm actually rather confused about the whole diagnosis now. This is how it went down: last year (when I had a GP - I've moved since then) my GP's sub (who was ignorant) ordered a blood test for one & only one of the celiac antibodies. I had been gluten free for about a week & a half (I was put on the gluten-free diet as a trial by my surgeon & I had never heard of celiac before.) Anyhow, despite the fact I couldn't convince her to order the panel, I called the clinic back & my GP added in the panel. (My blood had already been drawn.) When I returned to my GI, she was furious, called the whole thing a mess, and canceled the panel. She insisted I had a hyper sensitive stomach not Celiac. So, I pretended I hadn't researched a single thing on Celiacs and asked if there was a genetic test since it runs in the family. (I didn't know this for sure yet but one could pretty much check off celiac-related cancers & autoimmune diseases that numerous people on my mother's side have endured.) She ordered it to "rule it out" as she was certain I couldn't have celiac. Ironically, she used my bad gallbladder to justify it. (You can't have two issues?!) Anyhow, the sub left a message on my phone telling me the celiac antibody was positive - I'm not even sure which one. Then, I found out I had both DQ2 & DQ8 plus I was seeing improvements on the diet. (The D that I had for years had begun to let up & I had reached the point where I was getting up hourly throughout the night.... um.. it was pretty much water.. Everything I ate seemed to pass right through me. It took months for a lot of other random issues to clear up. Yet, I went from somewhere in the mid-to-high eighties in Oct to 106 lbs in April. I dropped a bit with the gallbladder attacks but only 2-3 lbs nothing big.) That was more than enough for me. To her defense though, she sent me off for a bone scan since I had fractured my arm by falling which showed osteopoenia. So, at least she caught something. Although, I was ignorantly under the impression I had an official diagnosis since, well, it's written with the diagnostic code & everything one the bone-density scan order for my insurance company. Now, the mystery antibody test shows up as a clerical error on my records. What? Is there a way I can contact the lab directly? I'd have to find out where they send blood work off to first though & this is sort of on the back burner. I'm attempting to get this GI to take me seriously without a gluten trial. I'm... barely functioning as it is. How would eating something that very obviously makes me ill help? It's absurd. In the very least, my new GI ordered blood work. I'm still waiting for the results yet that's more than the clinic where I had the surgery did... They have to believe me. I was 104 (no shoes) before going into surgery. I'm around 95 now with clothes & shoes....and the only reason it hasn't dropped more is because I'm practically living on my floor. (The less sitting up - the more I'm capable of eating.) I also ran into some info on Lyme yet I'll have to go through my GP if I want testing. (I doubt I'm barking up the right tree with that one though.) I'm pretty much not functioning so a friend is coming to stay with me for a week thank god. I truly have some amazing friends. As for school, unless a doctor writes me a letter there isn't anything that can be done...Also, to get the summer off my record I have to see a Dr. in student health. Since I withdrew, I'm ineligable unless I pay out of pocket. (Not possible.) Yet, I can petition later assuming a student health doctor believes me if I enroll in the fall. . . At the moment, I don't have enough money for tuition and even though I'd receive a refund if I withdrew within a week (which was my plan) ...well... it's not happening. I'm a black hole according to my parent so I'm not trusted to get the tuition back successfully. I really don't know what to do about that. If I cancel my registration - I'm out for good. If I withdraw I can try to be readmitted in the spring & I'll have a decent chance. I reviewed my post & realized how confusing it is since I didn't clarify between the different GI's. The new one is #3. The first one moved. The second one... well.... received an angry phone call from a parent (about writing a note for school) & I was dropped as a patient. I don't know. Does anyone have any ideas? Generic, I'm going to write you about how you went about the SOD diagnosis...... ...... Sorry. I think a lot of this was just an aimless rant. It's also a way for me to keep track of myself/remember things. My memory is beyond crappy at the moment. Anyway, if you made it this far thanks for reading. I can be terribly confusing when I'm not feeling well.....dizziness? who knows.
  15. It was sort of the opposite after going gluten-free with me. Before, quite a few meds seemed pointless which I mentioned to a doctor once who... didn't believe me. So, I dropped it. Anyhow, are you taking an extended release form of a med? The molecule is attached to a polymer which your body has to digest through before receiving the intended medication. Usually this is mixed with the "instant" release (i.e. the active ingredient/molecule isn't coated with something you have to digest through). I would benefit in the morning when I took my first dosage yet after two hours (this med was supposed to last 7-9 hours) it would cease working (in very obvious ways). Then, by the evening I'd feel it "kick in" again. (It was an ADHD medication.) I couldn't sleep for the life of me due to this. Four years later and seven/eight months after going gluten free, I oddly don't have that issue anymore. I hope that helps. If your doctor doesn't believe you or take you seriously - find another one. Another thing to check into is if you've switched generics. The FDA allows 20% deviation from the brand's original formula.