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

Newbie Alert

Callyboy

Recommended Posts

Callyboy Newbie
Callyboy
Posted

HiGuys, sorry if this post is in the wrong place, but i am at home at the moment and on dial up, which is a pain as its soooo slow.

I am new to this and would like some advice please.

My sister has just been diagnosed(spelling ?) with celiac disease and told me that i should check things out with my doc (genetic right ?). Anyway, she has just popped over from Canada and we got talking about it in the pub !! she descrbed some of the symptons she has, and i was horrified that all the things she said i seem to suffer from !!! fatigue, flatulence,lower back pain in the morning, sudden need to go to the toilet and crap(sorry)(been caught out a few times after drinking down the pub(beer!!!!)- so bad !!)stomach feels very acidic, depression - need i go on ? anyway, what you guys reckon ?

I have ordered a blood test kit from the internet that test for it, and for some reason i am kinda hoping i have it, as my life is pretty crap health wise at the moment. I have had a lot of stress in the last 3 years, and i have read that this can trigger things off. right ?

Look forward to hearing from you guys.

cheers

Pete

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Since your sister has is and you have the symptoms, there's a high probability you have it. If you're going to be tested, unless it's by Enterolab, you need to keep consuming gluten until after the testing.

happygirl Collaborator
happygirl
Posted

who did you order the test from?

Its good you are being tested. Celiac is genetic, and leading Celiac experts recommend that ALL first degree relatives (siblings, parents, children) are tested for it.

Callyboy Newbie
Callyboy
Posted
  • Author

Hi Carlab,

Whow that was a quick reply - Thanks.

Yeah, i had read that you should contiue eating as normal. I hope the kit comes soon. I really need to know what is going on with my body. I want to feel "alive" again.

thanks again.

Pete

Hi Laura,

thanks for the reply as well :)

got the test kit from here :

Open Original Shared Link

Cheers

Pete

Oh my god -what if i have got it ? NO MORE BEER/PIZZA OR PASTA RIGHT :(

Jestgar Rising Star
Jestgar
Posted
Oh my god -what if i have got it ? NO MORE BEER/PIZZA OR PASTA RIGHT :(

No,

Just different beer, pizza and pasta

Callyboy Newbie
Callyboy
Posted
  • Author
No,

Just different beer, pizza and pasta

PHEW !! :o

Jestgar Rising Star
Jestgar
Posted

Think of it as your chance to get out of the rut we all get into.

You'll try new foods you never thought to look for (Almond crackers! Yum!)

You'll challenge your creativity (Hmm, how can I replicate that fried chicken)

You'll have more chances to talk about poop then you ever thought was possible! (check out some of the threads on this site)

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Pete, and welcome to this board. As the others said, it is very likely that you have celiac disease, too. And there are gluten-free beers, pizzas and pasta out there.

Even if you test negative with your kit, you should not assume you don't have celiac disease. If it is negative, you should either keep eating gluten and go after formal testing with a doctor, or if you don't want to do that, just try the diet to see if it helps.

Either way, we are here for you!

Carriefaith Enthusiast
Carriefaith
Posted

Welcome :)

I've read that all first degree relatives should be tested for celiac disease. The Tissue Transglutamase blood test (tTg) is highly specific for celiac disease. However, you need to be eating gluten in order to avoid false negative results.

I believe that stress may have triggered or worsened my celiac disease.

You can make almost any food you want on the gluten-free diet. I have recipes for lots of different foods if you are interested. Some people prefer my food over normal gluten food.

Callyboy Newbie
Callyboy
Posted
  • Author

Hi guys,

Thanks for all the replies.

Will let you know how i get on with the test. Hope it arrives today.

Cheers

Peter

Callyboy Newbie
Callyboy
Posted
  • Author

Hi again,

Well i did my home test last night and it came out negative :shock:

So where do i go from here ? In a way i was kinda hoping that it would be positive- strange. But at least i would know where i was at.

Should i just try a gluton/wheat free diet for a month and see if i feel better ?

I have also seen a food allergy test you can have which test for about 150 allergies - worth a try ?

Any help and advice appreciated.

Cheers

Pete

Guest nini
Guest nini
Posted

my personal opinion is that positive dietary response is the most valid diagnostic tool, so if you do decide to forego further testing which is just costing you extra money and extra time when you could be getting better, just try the diet for at least six months, then if you aren't convinced by then, try adding gluten back into your diet and monitor your body's responses. You may not be celiac YET, but just gluten intolerant, which the only way you would be able to determine that is by the diet. Elimination diets are very valid tools for detecting other food intolerances as well.

AmandaD Community Regular
AmandaD
Posted

Go to your family practiitoner, tell them your sister was diagnosed with Celiac and you should have the TTG Iga antibody test done.

That's what my family's been going through.

happygirl Collaborator
happygirl
Posted

pasta: try the Tinkyada (rice based) pasta...it is hands down (well, to most of us!) the best. I love it.

keep us updated!

Archived

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

Go to topic listing

  • 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. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
    2. trents
      - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    3. trents
      - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the...
    4. RMJ
      - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    5. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      Is it gluten?

      By trents · Posted

      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      nothing has changed

      By RMJ · Posted

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
×
×
  • 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.