Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Lindsey
Posted

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
darlindeb25
Posted

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
RiceGuy
Posted

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
Lindsey
Posted
  • Author
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
Lisa
Posted

Lindsey:

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

Lindsey Rookie
Lindsey
Posted
  • Author

Lindsey:

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

Lisa Mentor
Lisa
Posted

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
Lindsey
Posted
  • Author
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
debmidge
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,210
    • Most Online (within 30 mins)
      7,748
    Sharon Camden
    Newest Member
    Sharon Camden
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Chissers
      Could this be Celiac disease?

      By Chissers · Posted

      Thank you for your prompt reply. Have others experienced LUQ and L sided back pain when on gluten? Could gluten be irritating the pancreas to cause the slight rise in lipase?
    • Rogol72
      Medicinal mushrooms 🍄

      By Rogol72 · Posted

      Wow! I'd be interested to know where you get the tinctures. You can DM me if you wish. There's a Spanish company ... hifasdaterra ... who make high quality medicinal mushrooms in capsule form. 
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      There is dextrose in table salt?
    • trents
      Gluten Free Beer - The Enzymatic Hydrolyzation Process Problem

      By trents · Posted

      Jason, I have a bone to pick with your terminology. There is "gluten intolerance" which I believe is synonymous with celiac disease and then there is "gluten sensitivity" which comes from Non Celiac Gluten Sensitivity or NCGS for short. It is true, however, that there is still a lot of inconsistency in the use of these terms.
    • Liquid lunch
      Medicinal mushrooms 🍄

      By Liquid lunch · Posted

      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
×
×
  • Create New...