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About 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. Yes, I would say if you DON'T have to have a colonoscopy, then don't it's truly awful. The preparation involved with drinking all kinds of horrible stuff not to mention the enema is HORRENDOUS!! I think in my case they were trying to rule out a colan infection, Colitis, Chrohn's Disease and Cancer hence why the doctor ordered the colonoscopy first. Lynda
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. Welcome Jacey I've only been on this board for a day and I've already found it to be extremely helpful. I am very newly diagonosed with Celiac. I also have Fibromyalgia so it is interesting that there could be a connection somehow. Lynda
  14. 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
  15. 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
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