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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,016
    • Most Online (within 30 mins)
      7,748

    Chloelouise04
    Newest Member
    Chloelouise04
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
×
×
  • 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.