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GraceE

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About GraceE

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  1. So I had the blood tests run, except they didn't do the tTG, which I keep seeing is the most accurate. The day after the bloodwork I went gluten-free and have been doing much better. I do know that last week I accidentally got some gluten and didn't realize it at a restaurant (until after I had eaten it - it was hidden sauce in something). About 15 minutes after eating just a couple of bites I was so nauseated I had to leave the restaurant and never ate another bite. For about 24 hours I had an upset stomach, gas, etc. Anyway, I got my blood tests back and they were SO negative! I see a lot of people's results on this post and they're at least something, but here's what mine were: Gliadin peptide, Ab, IgG - 5 Gliadin peptide, Ab, IgA - 0 Is that strange for them to be so low? Even down to a zero?? Now I'm confused and second guessing whether getting sick the other night from the gluten that I confirmed that I got was just a fluke. I'm feeling better on the diet so I guess I'll just stay on it. I've even tossed around going back on gluten just to see what happens but that freaks me out! Not sure why I even consider it.
  2. Guhlia - I'm just reading through some past posts and had a question for you based on your comments. I have some posts out there about my problems. In short...I used to have awful problems, now they're less severe but still present. For example, while I've only had D once this week, last night i was so bloated I looked 4 months pregnant and gained 4 or 5 pounds in one day! This morning the bloating was almost gone and I had lost 4 pounds overnight. I'm just questioning myself, knowing that sometimes I eat gluten and get sick, sometimes I don't. FYI...I was diagnosed a year ago with "severe" IBS. Just thought you might have some advice since it looks like before you went gluten free you didn't get sick every single time you ate gluten. Is that right? I think that's one reason this disease is so hard to diagnose in some people! : )
  3. Hi and thank you for the comments! I like how you say that the symptoms are pointing to a problem. I honestly am driving myself absolutely nuts with this. A few months ago I was not ever well. I would be in the bathroom with such horrible D that I was shaking and sweating and almost passing out. I also had horrible gas and just felt awful all the time. This went on for months, and intermittenly for years. Now, the severity of it is better, which is why I'm doubting my thoughts on celiac. Then I have days like yesterday...mild nausea off and on all day. Last night my stomach was so bloated I looked 4 months pregnant AND I had gained 4 or 5 pounds in one day. When I woke up this morning the bloating was mostly gone and I had lost 4 pounds. I just have a hard time accepting that that's just IBS (which is stress related). You know what else is interesting? My mom has had major stomach problems her whole life...constipation more than D, major bloating (I mean MAJOR), reflux, gas, even early onset rheumatoid arthritis, depression, the list goes on. My mom is my best friend and a wonderful nurse, BUT she still thinks she has IBS, joint problems, etc. that are just part of her body for no reason and she has to deal with it. I think she has more classic symptoms than me! But celiac isn't something she learned much about in school...plus, she was in nursing school back in the late seventies/early eighties when I know the research on celiac wasn't great. Anyway, sorry for the ramble! It's just a confusing thing, especially since I haven't had the severe symptoms lately. I appreciate the advice!
  4. Hello there! I've finally decided to get a new doctor who I'm going to see next week. She's an internist but is the highly recommended doctor of a friend who has both type 2 diabetes and celiac and seems to know a lot about it. I'm gathering all of my notes on the stomach issues I've had for years and I just have a quick question for anyone. For those of you that are diagnosed celiac's...did you ever have days or even weeks before you went gluten free that where you felt good, even though you ate gluten or were you basically sick ALL the time? And same question to those of you out there that have not been diagnosed and are just suspicious that you might have a gluten intolerance. I guess I'm STILL feeling that since I do have some good days or weeks that maybe I do just have severe IBS and have to deal with it. Just curious! Thanks!
  5. Noglugirl - Thank you soooo much for this!!! It is immensely helpful! Thanks to all that have responded to my post. I feel much better and feel like I can make better decisions around all of this. I also have a posting out there about my daughter. Not only am I concerned about myself but i'm concerned about her. She's always had GI issues. Most recently...constant "my tummy hurts" complaints, always had a slightly swollen belly, constantly constipated. Her pediatrician says it goes like this....eating habits (typical toddler snacks, etc.) equals constipation equals bloating and tummy aches. BUT the kid eats very healthy - lots of fruit, etc. So I'm either going to just start us both on the diet or get us both in to be tested. I live in the same town in NC where Dr. Ivor Hill practices, some of you may be familiar with his research around celiac, specifically in pediatrics. I also just found out that my boss' wife and daughter both have celiac! So now I have some resources here as well. Anyway, thank you, thank you noglugirl for this list - what a tremendous help (and relief)!
  6. Thank you for the advice! I have a quick question about Enterolab. I've heard a lot of controversy out there about that. I've also hear that about 99% of doctors don't consider those results accurate. Any thoughts on that? Thanks!
  7. Hello there! I have several postings myself out there about my own suspected celiac/gluten intolerance. I'm also curious about my 4 year old daughter. She's struggled from the day she came into this world with massive reflux as an infant and continuous constipation. She STILL has constipation. Recently she was complaining multiple times a day that her tummy hurt. No diahrea (sp?) or vomiting, though. I took her to the dr. a few months ago and they think the tummy ache complaints are from all the constipation, which could be true. She's been off and on Miralax for years. She also complains pretty frequenty of headaches. I've tried to stress the importance of only telling me that her tummy hurts if it really does...you know how kids can get in those habits of saying stuff like that. She's definitely not underweight - she's actually always been in aobut the 90th percentile for weight at 75th for height. She wants to eat all the time!! I swear the kid eats more than me! She has a big belly but I've always attributed it to just her big appetite. It's not hard, but just big! I have to buy her clothes a size too big just to make room for her gut! It just hit me the other day, with all of my GI issues, diagnosed severe IBS and my personal suspicions of celiac or gluten intolerance that maybe this is her problem too? She's never been a really active child...gets pretty worn out quickly. She was also a late crawler (1 year old) and didn't walk until she was 18 months. But academically she's wonderful - ahead of her age. Does anyone have any suggestions? I love her pediatrician but I'm afraid she'll brush it off again. She thinks the constipation is just a fact of life and probably a result of what 4 year olds like to eat. But this has been going on since day one. And I really try to limit sweets and as much unhealthy food as I can. She probably only poops twice a week. And when she does it's a bowl full!! Last thing....she doesn't get sick very often. Just this nagging complaint of headache and tummy ache. Plus the constipation. Anyone have any thoughts?
  8. Thank you so much for the information and advice! I really think I'm going crazy or maybe I'm a hypochondriac. Reason I say that is that my symptoms have actually been better for the past couple of weeks. It's been YEARS since I have had stomach problems this minimal. So now I'm wondering if maybe whatever it was it just gone. Maybe it was IBS? I still have this underlying suspicion that it's a gluten intolerance. While I'm not having all the major problems I was having, my poops still float and I still go about 3 or 4 times a days. But really, even the frequency has died down a bit over the past week. So now I'm more confused than ever! I actually decided this weekend that regardless, I would just go gluten-free. But what's so frustrating is that everyone I've told wonders why I don't just go find a new dr (I dont' like mine) and get tested before I try the diet. They all just say that it seems like so much trouble and without a "real" diagnosis, they don't think I'll stick with it. That's starting to make me MAD. Even my mom who is a nurse (and my best friend!) seemed a little unsupportive. I know this diet is tough at first and I need support which is why I guess I would also like to have a definite diagnosis. I've thought about doing the Enterolab or one of the other home lab tests but I know that drs. don't take it seriously and I'm afriad that others won't either. I really should not worry so much about what others think, right? So bottom line...any suggestions on whether I should go gluten-free for 4 weeks and see how I do (given my lightened symptoms the past 2 weeks), or just find a new dr. and start that whole process again. Sorry to ramble, this is just a really confusing thing for me right now!
  9. Does anyone ever feel discomfort after eating higher up in your stomach...more like a heartburn, reflux-type reaction but not classic heartburn and reflux. I get that way about 30 min. to an hour after I eat with a little nausea. Kind of hard to describe. Didn't know if that was another typical gluten intolerance issue. Thanks!! FYI...I haven't been diagnosed...just suspicous that I may have an intolerance to gluten.
  10. Thanks for the advice! The only reason I'm on the Lexapro is as an off-label solution to severe IBS. I was not depressed before or noticed any mood problems except being upset, etc. about feeling so awful all the time (my stomach/digestive problems). So I don't anticipate any mood problems when I go off. I started out only on 5 mg and then went to ten so if I do choose to go off I'll probably go back to 5 mg for a week or so then stop altogether. Thanks!!!
  11. Another thing....if I decide to give it a shot and go gluten-free I'm thinking I should stop taking the anti-depressants so I know what is really helping. Anyone have an opinion about that? Thanks!!
  12. You're right - I should probably just try it and see what happens.
  13. I struggled for a long time with stomach problems, pain, cramps, nausea, gas, alternating C and D, feeling miserable. I was diagnosed with IBS (of course) and put on a low dose anti-depressant (Lexapro). After a few weeks it actually helped. But I still have (and this is kind of embarassing), really bad gas and still some lingering stomach issues. When I say really bad gas, I mean actual gas, way more than a normal person should have, gas pains and it's humiliating because it could literally run someone out of a room. AWFUL! I can't be digesting food normally. I've been reading these mosts for months but have never put one up myself. My dr. brushed off Celiac. He told me I could try going gluten-free but said "it's just really tough to do that diet". And I love my dr. but I'm wondering if with the gas and lingering, albeit mild, stomach problems if it's celiac disease but the major symptoms are being masked by the anti-depressant. I know these questions of IBS vs Celiac get asked a lot but I'm just not sure what to do. Should I bypass my dr. and go straight to a GI and ask for the blood test? I could just go gluten-free and stop taking the Lexapro but I know without a real diagnosis from a dr. then I probably won't stick to it like I should or get as much support (I'm afraid anyway). Any help or thoughts would be much appreciated! Thanks!
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