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

At Last An Answer!


Lindsey

Recommended Posts

Lindsey Rookie

I'm 39 and I've suffered stomach pains, wind, bloating, constipation, itchy skin rash, anxiety, foggy head, nervousness and depression for years now (getting progressively worse) I'd given up with doctors until last week when I tried once more.....he is sending me for a coeliac screen which I'd never heard of so I looked it up.

What a revelation! The symetrical skin rash really clinched it! I at last have a answer to this problem that has been litterally ruining my life!

Today is Monday and my blood test isn't until Wednesday morning but I've already cut out the gluten. I've read that I shouldn't do this as my blood tests won't show it if I have it? It's hard to make myself eat gluten now as I've not had any symptoms for 2 days now! I could do with the help from a dietician though and I don't suppose I'll get that if I don't test positive? I'm in the UK by the way...

How important do you think it is to get a proper diagnosis - I'm sure you can tell by my post that it's fairly obvious that I have coeliac.

I suppose I could manage a few bits of bread between now and Wednesday, but what about after that? Will I have to go for other tests and still be eating gluten? I don't want to eat it for a day longer than I have to if I can avoid it.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.

RiceGuy Collaborator

I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.

Lindsey Rookie
A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.

I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.

Thankyou both very much for your repiles - I totally agree with that and I will stick with the gluten free. I'll still have the test and take it from there. Thankyou.

Lisa Mentor

Lindsey:

Good luck with your testing on Wednesday. If we can help you in any way, just ask,

Lindsey Rookie

Lindsey:

Good luck with your testing on Wednesday. If we can help you in any way, just ask,

Lisa Mentor

You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.


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



Celiac.com Sponsor (A8-M):



Lindsey Rookie
You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.

So should I expect to get some symptoms (painful bloating and constipation are my worst ones) for some time yet? I shouldn't be surprised to get these symptoms even being gluten free, for a certain time? I was just wondering as I might think I've not got a gluten allergy if the symptoms persist while gluten free.

Thankyou.

debmidge Rising Star

Every now and then after going gluten-free you might get unexplainable gas, bloating which could either be coming from mysterious sources of gluten or "just because." The "just because" type can go on and off for the first year gluten-free.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    2. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    3. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    Aron2
    Newest Member
    Aron2
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
×
×
  • 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.