Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Very Upset With Myself


Bumblebee

Recommended Posts

Bumblebee Newbie

Hi everyone. I am new to the board. Last January, I tested positive for gluten sensitivity through Enterolab. I guess I didn't want to believe it was "that bad" because it was just above the the positive result. All the other tests (ttg, casein, egg, yeast) were negative. Malabsorption was also negative, albeit very close to the positive number (296). And I have one copy of a gluten sensitivity gene, but no celiac genes. So, I was definitely trying justify everything.

Fast-forward a year-and-a half later, I am still eating gluten and still miserable. I even thought about ordering another test from Enterolab to "make sure" they were right the first time. Part of me is actually scared that it might be worse. Another part of me is scared that it might be negative because I was just above the value for a positive result...if it were negative, I wouldn't know of anything that causes all the ailments I have and that's even scarier than thinking it is gluten. I think I'm starting to sound a little nuts. I know that I feel better when I don't eat gluten. I am a different person if I just switch from wheat to rice. No heartburn or stomach cramping or diarrhea or headaches or eczema.

I don't even know what the point of this is. I guess I just want to say hi and that I am planning to go shopping tomorrow and stock up on gluten free foods. I have to do this for me. There's just this nagging part of me that doesn't want to believe this is true. I know I just need to suck it up and take care of myself.

Shannon


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Don't be mad at yourself. My casein score came back 30 from Enterolab (less than ten is normal). I wasn't ready to eliminate both gluten and casein, so only eliminated gluten. I felt a lot better, but thought I kept getting glutened until I realized it was always after dairy! Now I'm off both.

Denial is a normal stage. You should go gluten-free and stay that way. Your absorption is already suffering -- since it was the high end of normal last year, it's probably worse this year. Don't fret about the past, you can't change it. You can change the future.

My daughter got a low positive score, too. We just consider that we caught hers before it had done as much damage as it had done to me.

Bumblebee Newbie
Don't be mad at yourself. My casein score came back 30 from Enterolab (less than ten is normal). I wasn't ready to eliminate both gluten and casein, so only eliminated gluten. I felt a lot better, but thought I kept getting glutened until I realized it was always after dairy! Now I'm off both.

Denial is a normal stage. You should go gluten-free and stay that way. Your absorption is already suffering -- since it was the high end of normal last year, it's probably worse this year. Don't fret about the past, you can't change it. You can change the future.

My daughter got a low positive score, too. We just consider that we caught hers before it had done as much damage as it had done to me.

Thanks for your response, Carla.

You are so kind. I am 26, so I guess it's sort of good that I tested early before it gets very, very bad. Even if I did retest, it would be probably be worse anyway. The most important diagnosis is the fact that I feel MUCH better without gluten. I keep reminding myself that is what is MOST important.

CarlaB Enthusiast
Thanks for your response, Carla.

You are so kind. I am 26, so I guess it's sort of good that I tested early before it gets very, very bad. Even if I did retest, it would be probably be worse anyway. The most important diagnosis is the fact that I feel MUCH better without gluten. I keep reminding myself that is what is MOST important.

That IS what is most important, even Enterolab says that on their website. You are lucky, I was 43 when I discovered what my problem was.

Ursa Major Collaborator

Hi Shannon, and welcome to this board. Don't be too hard on yourself, it is such a big lifestyle change! As Carla said, you can't change the past. Change your eating habits today and go gluten-free, to make sure your future looks brighter, and you get well. And if you post here whenever you are tempted to cheat (or whenever you need us), we'll make sure we give you the encouragement you need to stop yourself.

Shannon27 Newbie

Shannon,

I'm a Shannon too. Welcome! I know this is hard. I just went gluten free this past Monday. It is the hardest thing I've ever done. Carla mentioned denial. I was there too. All these ladies on here are so supportive and kind. Please come here whenever you need us.

Hugs,

Shannon

evie Rookie

Shannon,

I'm a Shannon too. Welcome! I know this is hard. I just went gluten free this past Monday. It is the hardest thing I've ever done. Carla mentioned denial. I was there too. All these ladies on here are so supportive and kind. Please come here whenever you need us.

Hugs,

I have only been on the forum since early April so I am fairly new too. I agree it is quite a shock to be diagnosed celiac and go on new way of eating. But it sure pays off and hopefully you will not get yourself in as bad shape as some of us who were not diagnosed for many years!! :angry: some doctors just do not know enough about this problem so you keep going around to many Dr's. It is so good to be feeling better even if you know you will feel better yet later when you get more things under control. :) Just hang in here and learn from the many peo-ple who know how to research problems. so many of the posters here know more than any Dr., and they share their info. Takes patience but I am sure you have that too. evie :):)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,833
    • Most Online (within 30 mins)
      7,748

    MamaKH
    Newest Member
    MamaKH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.