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LyndaCanada

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  1. Hi Everyone

    I'm sorry but I just have to vent. I have a good friend who's husband is supposedly Celiac for 7 years. Well, I went out for dinner with her last night and she drove me insane. Her dh has never had the biopsy, the bloodtest and does not have low iron. He may very well have some of the other symptoms of Celiac, not really my business but it's her advice is driving me NUTS!!

    I was trying to explain to her that right now, I'm extremely sensitive to any gluten, I have been advised by the dietician to do the separate toaster thing, etc,etc. and she's trying to tell me it's not necessary. Because her husband doesn't react as extremely to the odd glutening I guess she figures it's no big deal if he accidently has some cross contamination. I always thought it didn't matter if you got a crumb of gluten in your gut or a whole loaf of bread that the damage is the same regardless of your reaction, am I right about this? She said there is 2 schools of thought " a little gluten won't hurt you" sort of attitude and the die hard, "don't let gluten near me" School of thought.

    Anyway, I know she's trying to help me but I wish she'd respect the fact that I'm really freaked out by this and the fact that I have such violent reactions to gluten and I'm SCARED about the potential damage i could be causing.

    She also disputed the fact that untreated Celiac can increase your chances of Cancer in the intestines. I mean how do I repsond to this? My own father told me recently that my Aunt had untreated Celiac for YEARS and she recently died of intestinal cancer.

    I know that every person who has Celiac has take charge of their own eating habits and health but getting this kind of advice kind of scares me. Am I being overly paranoid or do I just need to tell her to lay off?

    Is this something I'm going to have to deal with all the time? It's frustrating.

    Thanks for letting me vent!!

    Lynda


  2. Thanks Nikki, I appreciate the information. Honestly, i felt so brushed off at the doctor's office yesterday I was quite angry. He barely looked up from the report he was scribbling up to answer my questions. Like I said, I had NO CLUE my iron was this low, no wonder I felt so horrible!! He didn't explain anything ughh!!

    Thanks again, I'm so thankful that I have this board to help me answer my questions that the doctor seemed too "busy" to answer!!

    Lynda


  3. Wow! What totally insensitive teacher, she must just not be thinking. There are soooo many gluten-free snacks she could provide instead. What about fresh fruit and veggies instead of JUNK food.

    I think you should type up a letter to all of the parents of your child's class and do a sign up sheet for the parents to each bring some fruit and vegetables in instead?

    Lynda


  4. Actually, they can still see flattened villi on a colonoscopy, in my case they did I had a colonscopy first and they could see the flattened villi and they wrote "strong suggestion of Celiac Disease" on my biopsy report. My doctor then ordered the blood test that came back negative. They did eventually do and endoscopy after I had eaten gluten-free for about 2-3 weeks. They could still see the damage but it did show signs of healing.

    Lynda


  5. That sounds unpleasant. Did they give you a copy of your lab results?

    Yes, it cetainly does! UGhh!

    The weird part is that I've always been borderline anemic for years. I was very suprised that I was going to have to have this done. Unfortunately my GI doctor wasn't terribly talkative yesterday so I didn't get a chance to ask him much. I guess the iron levels must be pretty low since I became really sick in the last 3 months, who knows?

    Lynda


  6. I would encourage you to have the biopsy. I too have had 2 negative bloodtests but two POSITIVE biopsies. They did things a little backwards for me, I actually had the biopsy done before the blood test which was probably a good thing because my GP was trying to convince me that I couldn't possibly have Celiac Disease because of my STRONG negative results. You should have seen the GI doctors face when I told him what my GP said, let's just say, he wasn't impressed.

    If you do have the biopsy, you should be eating gluten for a proper diagnosis. In my case, I was eating gluten before my first biopsy so they could see the flattened villi but after eating gluten-free for about 2 weeks, my 2nd biopsy still showed signs of damage but there was some healing already. Goes to show though, going gluten-free has helped my healing in a short time.

    Good luck! That's horrible that you have to pay for all of these tests. In Canada it's all covered by our health care system.

    Good luck!

    Lynda


  7. Wow, that's awful! I'm so sorry. Do you think maybe if you contacted your local Celiac Association chapter they might have a list of good doctors? Where did your doctor go, is he still praticing in Calgary or what?

    Is this your GP that you mean or your GI doctor?

    To be honest, my GP was completely useless in helping me with my diagnosis, she was the one that told me "I couldn't possibly have Celiac Disease" because of my negative blood test after TWO positive biopsies. I depend soley on my GI doctor now.

    Do you have a good GI doctor you go to in Calgary? You should try to get into the GI clinic in Edmonton, it's really awesome. They have a whole office building next to the U of A hospital.

    There are at least 6-8 doctors that practice out of there.

    Good luck!!

    Lynda


  8. Hi Everyone

    In the last 5 days I've been eating Planters Hickory Smoked Almonds only to realize that I don't think these are gluten-free are they? I've had diarrhea since I started eating them.

    Is Maltodextrin and Smoke flavoring the culprits? I found some information about them and it seemed a little iffy? Anyone know for sure?

    Ughh, they were sooo good too but not good enough to make me sick!

    Lynda


  9. Oh my goodness YES!!!! I never thought of that. My VERY first symptom before the severe diarrhea started was the horrible itching down there. I was convinced that I had some sort of infection, I had all kinds of tests done and they kept saying there was nothing, it was awful. I was buying all kinds of over the counter creams and nothing gave me relief.

    Now, being gluten-free for almost a month, you're totally right, it's all gone away.

    Interesting observation, why would that be I wonder?

    Lynda


  10. Hello Everyone

    Well, the doctors suspected for months that I have Celiac and today I heard him say the words, are you prepared to go gluten-free for the rest of your life? Wasn't an easy thing to hear, I was hoping they'd say, it was just an infection or it was going away, I don't know what I was hoping. I guess I'm thankful it's not cancer or something worse like that.

    So I guess I get to join the official gluten-free Celiac Club.

    I am going to go for a sucrose iron infusion next month. I guess my iron levels have hit rock bottom. Has anyone ever had this done? I guess it's supposed to take 6 hours, so I show up at the hospital at 8 am and sit there til around 2:00, fun times. Just wondering what I might expect?

    I suppose I should have asked the doctor but why can't I just take iron supplments, anyone know? I also have to go for a bone density test as well.

    Maybe someone could explain this all to me, I'd sure appreciate it?

    Thanks!:)

    Lynda


  11. Hi everyone

    I haven't posted in a while because I've been feeling really good.... until today that is!:(

    I had my biopsy last Monday. The doctor had told me to eat lots of gluten before it which i was really worried would make me sick. I actually wasn't that bad, just really constipated whereas my problem before was always severe diarrhea. So after the biopsy the doctor told me that I could continue the gluten if I wanted until they knew for sure the results of my biopsy. I did have a previous colonoscopy biopsy that suggested Celiac in December but my blood test was negative so that's why they decided to do the 2nd biopsy.

    Anyway, for almost 2 weeks, I've been feeling really well, absolutely no diarrhea and continuing to eat gluten-free diet but then, all of the sudden I have diarrhea again this morning!!

    I've gone 3 times in about a 1 hour period!:( I'm so disenchanted. I know this is going to take time but does anyone elses bodies go in cycles like this? I don't understand what is causing the diarrhea? I guess maybe i ate more cheese and perhaps I shouldn't have? I've really been watching the dairy products but I was so hungry this weekend?

    Sorry, kind of a longwinded way of asking a question but does anyone else find that even on the gluten-free diet you still have relapses of your symptoms even if you continue gluten-free?

    I just want to try to understand what my body is doing!! I know everyone's symptoms are different but just hoping I could get a little reassurance I guess. I've been gluten-free for probably almost a month except for about a 4 day period before my last biopsy where my dr. advised me to eat gluten before it.

    Any insight or similar experiences? I'd sure appreciate the help!!

    Thanks!:)

    Lynda


  12. Hi Everyone

    Another question from the newbie. I have had one biopsy that the doctor wrote "highly suggestive of celiac" on the report but yet I tested negative on the Celiac blood serum test or whatever it's called. When the biopsy was done(December 18th) and when the blood test was done I was NOT gluten-free.

    I was advised to start a gluten-free diet from a clueless emergency room doctor. I know he meant well but now I've screwed up everything for my future testing from what I understand.

    I'd only been gluten-free for barely a 1 1/2 weeks and I went to the gastrointestinal doctor yesterday and he wants to do another biopsy, not really sure why, maybe to make sure it's not just an infection? So he wants me to GLUTEN up for the next 3 days. I had my first gluten in about 10 days last night, one bun and some regular lasagna and I was sooooooooooooo sick last night. He's told me to eat a loaf of bread each day for the next two days since my biopsy is on Monday. My question is will going gluten free for a 1 1/2 weeks really make that much difference on the biopsy? I know the blood test will be affected but I always thought that damage done to your intestines doesn't heal right away? Quite frankly, I'm scared out of my wits to eat all of the bread this weekend that he's told me to give how sick I already am from such a small amount? Is this really necessary? I have 2 little girls that are going to have one horrible weekend because I am quite certain I'm going to be severely ill from this? Has anyone ever had to do this, is it standard practice?

    What can I do, my butt(sorry to be graphic) is already on fire, I walk like I have a pole up there and I'm just soooo nauseated. My dh knows how sick I'm going to be so he bracing himself for the worse.

    HELP!!

    Lynda


  13. Hi There

    I am just new to all of this and so far I've been eating next to nothing for lunch, rice crackers,cheese and salad and I'm already sick of it!:( I think I'm lactose intolerant so I think the cheese is going to be out too so some of you were mentioning lunch meat, I know alot of them have gluten int hem. Which brands of lunch meat are okay? I live in Canada so I guess the brands could differ slightly. I came across a Grimms brand of sausage but never lunch meat?

    Also, I just assumed that all salad dressings had Gluten in them, which ones don't or what ingredient would I look for specifically?

    Thanks for your help

    Lynda


  14. Welcome Lynda, where are you in Alberta? I am in Calgary. I would say you have your diagnosis with the flat villi. The flu that is going around is not helping us as I have had it for about a week the first day I vominted and the big D for 15 hours straight, every fifteen minutes.

    Many times bloodwork will show negative and even sometimes biopsies will too. With bloodwork you need to eat gluten everyday and even then it can still show a false negative. The flat villi shows the Celiac. The thing is with reading biopsies it depends who the doctor is and what the doctor is who is reading it that week or month. If the doctor is not a doctor versed in Celiac then they will not see it as that. This was explained to us at the Celiac conference here in October, he was one of the specialists there.


  15. Hi everyone

    My name is Lynda, and I live in Alberta, Canada. I'm a married 36 year old Mother of two little girls. I am probably more fortunate than most given that my diagnosis has been relatively quick. I became sick in November with severe diarrhea of course thinking I had the flu. Once it progressed longer than 2 weeks I knew something else had to be wrong. I went to my family dr. who ordered all kinds of blood tests, urine and stool samples,etc. which all came back negative for the standard things like eColi,etc.

    She then ordered further testing like the small bowel follow through and barium enema but they couldn't get me in until after Christmas.

    It wasn't until about a week before Christmas that I became so severely dehydrated from the diarrhea( 50 trips to the bathroom in a 24 hour period) that they did an emergency colonoscopy and thought I had a colon infection. I was sent home with antibiotics which for a time helped. But, of course when you're stomach is upset, what do you eat, crackers, soup, toast, all kinds of gluten and wheat and continued to get sicker and sicker.

    Finally, they found in my biopsy that my villi were flat. They ordered the bloodwork for Celiac but it was negative, who knows why? Maybe someone here can tell me!LOL!

    So my family doctor basically told me there was no possible way that I could have Celiac Disease. Well luckily, I had a follow-up appointment with the gastrenolgist(spelling?)and he told me the blood test isn't nearly as important as the biopsy. He sounds pretty certain I have Celiac since I was given the literature on it and already arranged a dietician appointment but he's doing ONE more small bowel biopsy on Monday. Trouble is that I have been doing the gluten-free diet for about a week which I guess is a no no but I was told by a different emergency room dr. to do it so I have to GLUTEN myself up this weekend, ughhh, I'm dreading how sick I'm going to make myself but I guess I've got to do it?

    Even with the gluten-free diet, I've still had pretty bad diarrhea, about 15-20 trips to the bathroom a day but I suspect that I am hopefully not permanantly lactose intolerant. Does anyone know how common it is to become lactose intolerant with Celiac? I have LOVED dairy my whole life with no problems. I'm almost more sad about possibly being lactose intolerant more so that being Celiac:(

    I also was wondering if the lactose intolerance will get better?

    So, I'm bracing myself for the worst weekend, I was told to eat a loaf of bread a day for 2 days!! UGHH!!

    So that's my story. In hindsight though, I can now see that some of the symptoms were there and I just didn't know it. I have been anemic for over 5 years and I also have been diagnosed with fibromyalgia and depression in the last year on top of being VERY itchy all over my whole body for about a year. I don't think I have that skin condition, I forget what it's called though.

    I'm glad there are places someone like me can get support from others who know what it's like!:)

    Lynda