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Sandi*

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About Me

I've had problems for as long as I can remember (pain, bloating, constipation, fatigue, really skinny as a kid - albeit tall, mouth ulcers, etc.). I was actually tested for celiac three years ago. My blood tests were negative due to me producing very low levels of IgA, and my biopsy was negative. However, the doctor did find some "unspecified" inflammation that he didn't mention to me. I only found this out about two weeks ago when I was reading my file (I have a copy because I moved to a different country). I was always told that I definitely don't have celiac and there's no reason for me to eat gluten-free. I did try eating gluten-free in the past, and it did make me feel somewhat better. I never managed to stick to the diet for a very long time, though, my longest time was 4 months. Since I wasn't significantly better I ended up listening to my doctor and quiting. Since then I've been sort of gluten light, avoiding wheat and sometimes gluten. I usually did eat a little wheat once a week. All of this with me feeling somewhat better but not 100% improved.

After I found out about the inflammation that my previous doctor found, I decided to have the gene test. I got the results yesterday, I have the two alleles HLA-DQA1*0501 and HLA-DQB1*0201 that predispose me for a celiac disease. The report said that 95% or celiac patients and 20% of healthy individuals have this gene combination.

I was finally able to get an appointment with a new gastro who got really good reviews on the local celiac web sites. I'm seeing her on the 26th of August. We briefly chatted over the phone about my symptoms and she said that she'd like to do a biopsy on me, and of course, I would have to eat gluten for this for about 6-8 weeks. I thought about it and decided to go for it. It really matters to me to get a proper diagnosis. I mean, I think I already have my answer anyway because of the gene test and dietary response, but now in the back of my mind I'm curious about what that inflammation my doctor found really was. It'd be different had I been strictly off gluten for years, but since I haven't I think I can put up with feeling sick for two more months. I've been sick for years, so what's a couple more weeks.

  1. Sandi*
    Hi, thanks a bunch for the recipe, I really appreciate it, especially after hearing you're sick! Hopefully you feel better, soon! The link works great, I'll need to stop by my HFS tomorrow to get ingredients. Using lettuce is a great idea, Iceberg lettuce has these large, soft leaves on the otside that I'm sure will work great .
  2. Sandi*
    Thank you everyone for your suggestions! Unfortunately I can't eat nuts safely (I do sometimes, but then I pay for it later). A few people suggested corn tortillas - that's really a bummer because believe it or not, the "corn" tortillas they sell here (Czech Republic) are actually a mix of wheat/corn flours! So annoying! I'm visiting my relatives for Thanksgiving...
  3. Sandi*
    First I want to thank everyone who read my last "complaining" post, I also got a lot of helpful feedback and dietary advice. I also did some more thinking and reviewing of my diet, as well as more research. I felt so much worse once I started the gluten-free diet, more bloating, pain, constipation....it just didn't make sense since I expected to feel better...
  4. Sandi*
    ravenwoodglass - yes, I've been to an allergist before but it's exactly as you said - all about histamine reaction, which I think was a good place to start but didn't solve my problem. I'm seeing my GI doc next week to discuss why I'm feeling this bad, so maybe she'll be able to help me with the diet. I may look for a new allergist in the future; however...
  5. Sandi*
    Hmm, that's really interesting about pre-soaking, I knew it about legumes but not about other grains. I will definitely have to give it a try. I guess that rules out eating out, huh? I try to eat as healthy/preservative free as possible, but I do eat out for lunch about 3x per week. I try to order as simple meals as possible (aka chicken breast with a plain...
  6. Sandi*
    Thanks, guys! Yes, something's bothering me, it's just so hard to find out what it is! I'll try going back to the limited diet, I'm just not sure how well that will last since I also remember being very hungry back then. Oh well, I just wish it was easier! As for stress - actually, it's weird but I feel better GI-wise when stressed because I get the D...
  7. Sandi*
    Soy - yes, dairy - mostly, like I'd have a bit here and there, and only fermented stuff such as yogurt or cheese, not ice cream. I'd been on a dairy-free diet about 2 years ago but no result. When I first went gluten-free about 3 years ago I felt better at the beginning but worse towards the end. The whole episode lasted about 4 monts. I felt better initially...
  8. Sandi*
    I couln't wait to join those posters who were diagnosed by a biopsy and were able to start a new, gluten-free chapter of their lives, knowing the difinite underlying cause of their sickness! I just got my results back - blood test negative (but low IgA so it could be a false negative, too) and negative biopsy. No visible signs of damage, either. I...
  9. Sandi*
    My biopsy was a week ago, on 9/30, and the doctor said I could start eating gluten-free right after. I couldn't wait, I expected to feel better right away. Instead, I actually feel worse, I'm really bloated and have that typical stabbing pain in my lower abdomen. I didn't have this pain during my 7-week gluten challenge (before that I was eating wheat-light...
  10. Sandi*
    It depends on how long and how strictly you were off gluten before. I was gluten-light before, not strict and even then my doctor recommended to wait just to make sure I'd consume enough of it for the tests. If I were you and if I could, I would push the dates by anther 2 wks or so.
  11. Sandi*
    Usually 6-8 weeks is recommended. I'm having my bloodwork after 6 weeks of gluten and endoscopy after 7 1/2.
  12. Sandi*
    Yes, I agree here! It's like you don't realize how many of your problems can be related to gluten (except for GI problems). Let's hope our endoscopies turn out positive .
  13. Sandi*
    Hi Jillian, thanks, and sorry for the late reply . I was able to find a new doctor who actually seems to be knowledgeable about celiac disease so I hope she will also take many biopsies. No matter what, I'm going to go gluten-free right after the procedure anyway because I feel so crappy eating gluten. The symptoms have just gradually crept in - constipation...
  14. Sandi*
    Hi and congratulations! It must be a relief to finally know! I am currently waiting for a diagnosis myself, I have an endoscopy in a month (which means a month of gluten ). I must ask, though, in your signature it says that you had you endoscopy in June, it actually took over two months for your doctor to get the test results?
  15. Sandi*
    I'm so glad you posted this! I've had the same experience, I started eating gluten about 3 weeks ago and expected to feel a lot worse. Just like you said, the longer I eat regular bread and pasta, the less bad I feel. It's so weird. I am very tired and dizzy but I expected more GI problems, mainly the pain. I'd always had the pain when I ate regular bread...
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