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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

GF in BC

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About GF in BC

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  • Location West Coast of Canada
  1. My B12 is at 110 and the reference is 150-220 as low and up to 698 as normal.    It's pmol/L - whatever that means   For ferritin, anything between 15-49 is considered iron deficiency.  Normal is anything over 100.   I cannot tolerate supplements. I've tried about a half dozen types, including heme iron in pill form, and liquid that is meant for babies. Not sure what comes next.  I'm eating so much more meat than I ever have and I think that is why the further lowering of my number is confusing me.... I'm sure it will eventually get sorted out, but I definitely needed to whine! I felt better right away!
  2. Thank you for your response....most appreciated.    I'm going out to buy the sublingual B12 tomorrow as you are the second person today who has suggested this.   I've ramped up my meat eating.....I was a vegetarian for years and years, and my meat eating in the past decade was limited to maybe a dozen times a year or less. I'm trying to eat it at least once a week but it's not the first thing I think of when I'm planning meals - I'm sure that will come eventually.   I am so sad about the dairy. I ate Greek yogurt every single day for the past few years. It's a good way to get protein and calcium. I'm attempting to try goat's yogurt but that's an acquired taste! I'm also trying almond yogurt. Not overly impressed. Hence the almost-tears while shopping!  I'll give the coconut a try as well.....never even thought about that! I have a serious sensitivity to xanthan/guar/locust bean gums.....makes it difficult to find food that will work.  I'm a dedicated label reader now, that's for sure.   Again, thank you for posting.
  3. I haven't been on the site for a while, but I needed a place to post where people understand, so here I am.   I just received the results of my most recent blood work-up. I now go every six months to monitor my iron levels. This time I also requested my B12 be checked.   In June, my ferritin level sat at 32, down from six months prior (33). I'e been struggling to eat more meat and to find a supplement that didn't hurt me (and they've all been gluten-free). My GP wants me to take 300mg of iron daily and I just can't find a way to do it.   Today my number is 25. I don't understand. I've eaten strictly (and I mean strictly!) gluten-free since finding out about this whole issue last December. I also just discovered three weeks ago that I'm allergic to dairy. Not lactose intolerant....allergic. No more Greek yogurt for a while....if ever. (I was at the grocery store last weekend and found myself wandering aimlessly around, choking back tears. I felt like a little kid: "What CAN I eat??")   My B12 has also been flagged as way too low. Not sure if it's lower than typical as I have to pay for this particular test so it hadn't been done before.   My thyroid seems fine....and I have no symptoms of it being an issue. I know that doesn't mean anything after reading a few posts here.   Not sure what I expect from this post....I supposed I needed a small pity-party It's been a VERY difficult year adjusting and just when I thought I had it figured out....bam.   Thanks for reading my whining and I promise to buck up and suck it up and all that.....but not today.    
  4.   As someone who has suffered from undiagnosed gluten intolerance (or maybe celiac) for over 40 years, I feel your pain. I also was told I had IBS/spastic colon but only after a few random tests didn't show anything other than a couple of ulcers when I was 11. I have a feeling it was just about the same as when you're told you have "a virus". They don't know/don't care (?) and in my case decided it was all in my head and that basically this was going to be my version of normal.    My long story is posted elsewhere here so I won't repeat it, but it's been about five weeks gluten-free (with two accidental ingestions that caused me huge grief) and I can't tell you how much better I'm feeling. I had negative results for celiac but with my reactions my GP doesn't care - he said I don't need a formal diagnosis. We're watching my iron as it's extremely low but for the first time in my adult life I feel hopeful. I get extra vitamin D via a therapeutic dosage of supplements and because iron tablets make me ill, I use liquid. Apparently there are shots I can get if this doesn't work well enough.    You have to start somewhere. As I've read in many posts here, gluten intolerance can be just as bad and in some cases worse than celiac, as celiac is sometimes quiet and causing destruction without your knowledge. My reaction to eating gluten is right out front and jumping up and down to get my attention.     This forum has been wonderful for me and for the first time I feel like there are actually others who know exactly what I'm talking about!!
  5.   I like the diary idea as I already do that. I'm on Weight Watchers (1.8 lbs to goal!) and track like a maniac. I just need to add a column. LOL I am going to give yogurt another try on Friday after work and see if I get the same reaction. If so, then I definitely will pick up the lactase  and try it out. It's definitely a whole new world of learning stuff out there!    I have to say that since taking charge of this, I feel so much less depressed. I'm not Little Mary Sunshine yet....but maybe some day!   The helplessness of the situation sure took over every aspect of how I feel about myself. The social isolation is the one thing I am really strongly hoping to change. I've got a few months to work on this before good weather comes and I can join in on hikes and trips and such, just like a 'normal' person. Wow...who'da ever thunk??
  6.   Trial and error - hopefully I don't make too many errors!  I have a feeling that adding to my frustration is the fact that after being 'sick' for most of my (long) life I want everything to be perfect now that I have discovered the problem. After all, I deserve it for making it through, don't I?  LOL     I'm happy this is a busy forum with many people contributing - I appreciate the helpful responses I'm getting!
  7.   This is part of what I'm finding frustrating. Every person seems to be different so it's difficult to 'learn' what I might have reactions to just by reading other experiences. I love this brand of yogurt so I'll give it another try when I know I have time to deal with any stomach issues that may result.   There is an automatic mind-set I seem to have fallen into - any time I have a stomach ache, I'm attributing it to gluten. What if it's just a garden variety stomach ache - the type anyone may have? Is there such a thing? With so many decades of pain (hopefully) behind me, it may take me some time to adjust the thought process. 
  8.   I hope that's not the case for me. I eat Greek yogurt for its high protein value. I don't eat red meat, or much meat at all so it's a bit of a battle for me to get enough.  
  9.   No, the company said they cannot consider it gluten free. As it was the only thing I ate today that was out of the normal range of things I was eating this week and I ended up with a big stomach upset, I can only assume this might have been the trigger.   From the website:  "Unfortunately, the company does not consider its products to be gluten-free, since "the natural system for stabilizing flavor might contain ingredients derived from gluten sources." The same statement applies t  o Oikos Greek yogurt ..."    Oikos black cherry flavor is the yogurt I ate today. If it wasn't what caused the episode then I don't know what it was. I only ate fresh vegetables and salmon otherwise. 
  10.   I had a bit of a setback today after a few weeks of being pain free. I ate yogurt that apparently isn't gluten-free (which I discovered after researching everything I ate this morning). The (safe) yogurt I used to eat isn't available in Canada so I'll have to make a point of hopping over the border to pick some up.    The learning curve is a big one!
  11.   Wow! I had no idea about any link at all! His cancer was hepatoblastoma, no metastasis. More information I will provide to him.   You are such a wonderful source of information and you have no idea how grateful I am to have found this forum.
  12. Need Support And Motivation

      What a wonderful idea! I hope you won't mind if I use it as well.   I lost more than 40 years of my own life. I want to go on a hike, or kayaking or go with the 'girls' to Vegas for a weekend. I missed all the fun kid stuff too - the summer holiday camps, the sleepovers, most babysitting opportunities and even just hanging out at the mall. I'm really trying not to feel sorry for myself for what I lost, but excited for what is now ahead. It's only been 4 weeks and I'm sure I'll feel better about this in time.   Thanks for this has given me a really fun goal to look forward to! I've missed out on planning can't commit when you don't know if you'll be 'sick' that day.
  13.   The picture is actually in Utah, the shores of the Great Salt Lake but I agree, it does look like Parksville (one of my favorite places).  I live on the border of New Westminster and Burnaby.
  14. Thank you for your responses!!  I spent a few hours reading through many of the posts here and I felt that this would be a very supportive place to land - I was right   I'm sorry there are so many people that have had to travel along a similar road before finding an answer. I know it is especially hard when you're young.  I'm lucky that I did have medical facilities available to me, but it didn't help much when the drs were the ones missing the clues the few times my parents did bother to take me in. Once was because the pain got so unbearable I became hysterical and couldn't stop screaming. The neighbours weren't too happy about it. That doctor visit garnered me some white pills that were supposed to ease the 'gas pains'.  I just shake my head when I think about it now.    My son was tested for celiac last year. He had the biopsy and it came back negative. He suffers much the same as I did but it didn't start until after chemo and the drs figured it might be because all the good flora was killed. We did years of acidophilus and bifidus to try and encourage regrowth. He is now 23 and I think I am going to forward him a link to this forum so he can see that even a negative test result doesn't necessarily mean he's not dealing with a gluten intolerance issue. I didn't realize that and I know he didn't. He went back to eating 'normally' as he understood it must be something else, not celiac (or celiac-related). I hate to think that he still suffers when he's already gone through more pain than a child ever should have to bear.   I could write a novel right now as it's like I've found a safe place to let everything go, but I'll respect your time and post over the next few weeks.   Thank you again for being here!
  15. Please let me pre-apologize for a very long first post.   Brand new here and I cannot explain how (oddly) reassuring it has been to see posts that are similar to my own experiences.    Just over 43 years ago I was diagnosed with two ulcers and IBS. Yes, an eleven year old kid with ulcers (gastric and duodenal). The IBS was so life limiting as a teenager and I can't honestly remember a time when I didn't have a stomach ache - some bad, some excruciating. The agony was such that many, many times I would pound my thighs with all my might to try and transfer some of the pain elsewhere. Suffice it to say, it didn't work and I didn't wear many dresses as the black and blue marks were hard to explain.   Over the years, I tried to learn a way to cope. One of those ways was to simply stop eating, period. I once went for 28 days only eating life saver candies. I was desperate to find a way to be 'normal'. Karen Carpenter died of anorexia during this time and scared me back into eating. First thing I ate was a cheese sandwich. Within 30 minutes I was in agony.  My family got used to seeing me sit at large extended family dinners with an empty plate. I was starving, but I knew if I ate something, ANYthing, I would spend the rest of the night in the washroom. Not only would there be physical pain, but emotional pain as I can't describe the embarrassment factor. Eventually, it became normal for me to always feel "sick". I gave up going to the doctor, as x-rays, barium enemas, ultra sounds etc, showed nothing wrong. So, it was accepted that it was all in my head.    UNTIL, the beginning of December. I was at my GP's office for a follow up to my annual check-up. He has always been concerned that my iron is so very low. I don't tolerate supplements and now that there is no 'feminine reason' for me to have low iron, he wanted to delve more deeply. We also chatted about my inability to get a decent sleep (after he had no success with holistic attempts, he finally tried a prescription for me that still didn't work) and the depression that I attributed to PTS (never recovered from the sheer terror of watching my child fight liver cancer - even though he is cancer free now). Somehow, and I have no idea why I even said anything, I mentioned the IBS. This GP has been our family physician for 15 years and I never bothered to mention a problem because it was so much a part of my life that it no longer seemed wrong.    My GP immediately sent me for bloodwork to test for celiac. I had never really heard about it other than knowing that the gluten-free diet was something sufferers had to follow. Unfortunately, I decided to stop eating gluten at that moment, not realizing that I needed to have gluten in my system for the blood test to work properly.  By the time I managed to get to the medical lab, it had been almost two weeks since I'd eaten anything with gluten so of course the test was negative.    A few days later I hosted a Christmas work function and had it catered. Although I still wasn't eating gluten, I was SO new at it that I had no idea that gluten could be found in a quiche even if I didn't eat the pastry, or in salad dressings. After two weeks of not having one tiny stomach pain, I ended up ditching the party and going home as I was so ill that many of my co-workers were concerned. I swear, I would have considered going to the Emergency room as the pain was so bad I thought something horrible was going on. The only thing that kept me home was there was no way I could even think about leaving the washroom.    It's now about a month since I started eating gluten-free and other than the party incident and one other problem with restaurant food, I have been PAIN FREE. It feels weird. I can eat and actually go out afterwards. I don't have to decide between seeing a movie or eating dinner. I am trying to find the right balance between calories and getting enough fiber but that will come as I explore this further.   My GP says I don't need an official diagnosis. It's more than obvious to him that I have, at minimum, a severe gluten intolerance, and at most, full blown celiac. Either way, I'm staying away from gluten and it's no longer even on my radar as something I want to ingest.    The anger comes from having to suffer for so incredibly long without having anyone, including my own parents, consider that I truly was in pain on a daily basis. Every single Saturday morning: fluffy pancake breakfast = me gone for most of the day, pounding the daylights out of my legs. Surely that should have been a sign that something needed more investigation?   If you have managed to get through all of this, thank you. You have no idea what it means to me to be able to put this all down in writing and have someone who understands read it. I'm a 54 year old woman sitting here in tears, thinking that finally she might be able to start living her life.