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

Hello new here - need advice


PJP

Recommended Posts

PJP Rookie

Hello,

I went to my GP yesterday about my abdominal pains that I have been having since Wednesday (still going on now). I have had issues with my adomen like this before and other symptoms and from what the doctor said and from what I've gathered its most likely celiac.

She told me that for my blood tests to work I'd need to eat gluten for two weeks and I took this advice and I also need an ultrasound. But here I after eating pizza with my pains getting worse and buscopan barley helping and struggling to type because I'm in so much pain. Sorry if it makes no sense.  

Im thinking of goung to ae tomorrow as its so bad. Any advice would br sppricatef. Im sorry this couldn't be better. Thank you. 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor
2 hours ago, PJP said:

I went to my GP yesterday about my abdominal pains that I have been having since Wednesday (still going on now). I have had issues with my adomen like this before and other symptoms and from what the doctor said and from what I've gathered its most likely celiac.

She told me that for my blood tests to work I'd need to eat gluten for two weeks and I took this advice and I also need an ultrasound. But here I after eating pizza with my pains getting worse and buscopan barley helping and struggling to type because I'm in so much pain.  

Hello and welcome :)

Were you previously gluten free? For celiac blood tests to work you need to have been eating gluten for several weeks beforehand. Two weeks may not be enough for an accurate result :( It may be, people differ, but if the test is negative be aware it could be due to such a short time on gluten. 

A gluten challenge can be rough, although I found in my case that it got easier to endure as it went on (note I tested negative). If your pain is intense do go to A&E to ensure that there's not another factor at work.  

There's some info on testing here

 

PJP Rookie

Thank you :) I'm making my way up to A&E in a bit. I went gluten free for 6 days and that was 3 days ago. I'm not sure if thats enough? Ive only ever been gluten free for those 6 days.  

Jmg Mentor

I think that explains your doctors advice. I think she's thinking that with only 6 days off gluten that two weeks back on should be enough time. 

As to whether 6 days would be enough to throw a result, I honestly don't know. As far as I can work out people's reactions vary enormously. 

did you go gluten free before or after the stomach pains?

PJP Rookie
6 hours ago, Jmg said:

I think that explains your doctors advice. I think she's thinking that with only 6 days off gluten that two weeks back on should be enough time. 

As to whether 6 days would be enough to throw a result, I honestly don't know. As far as I can work out people's reactions vary enormously. 

did you go gluten free before or after the stomach pains?

Ahh I see. After. I went to A&E and they said to go for blood tests on Tues. I've been given tablets for acid reflux as well. 

Jmg Mentor
Quote

Ahh I see. After. I went to A&E and they said to go for blood tests on Tues. I've been given tablets for acid reflux as well

I hope you're feeling better now.

When you get the test results you can post them here if you'd like some input from the members. They were really helpful with me when I was going through the diagnostic process :)

Once you've completed testing you may want to go gluten free regardless of the results as it seems as if your body is reacting strongly to it, celiac or not...

 

PJP Rookie

Thank you so much and I will do. Tbh as of now things aren't much better, going for bloods tomorrow. Also I will post about my results :)


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



Celiac.com Sponsor (A8-M):



PJP Rookie

Thank you so much and I will do. Tbh as of now things aren't much better, going for bloods tomorrow. Also I will post about my results :)

Jmg Mentor

Sounds good. Try not to worry, lots of people have been where you are and come through it feeling better than they thought possible. :)

Ennis-TX Grand Master

On the gluten challenge you do not have to eat a ton of gluten, you cant eat mostly gluten-free, and just have half a slice of bread or a few crackers before bed and try to sleep off the worst of it. You just have to consume it daily to keep the antibodies up for the testing.

plumbago Experienced
10 hours ago, Ennis_TX said:

On the gluten challenge you do not have to eat a ton of gluten, you cant eat mostly gluten-free, and just have half a slice of bread or a few crackers before bed and try to sleep off the worst of it. You just have to consume it daily to keep the antibodies up for the testing.

I wonder if you meant "you can eat mostly gluten-free, and just have half a slice..."

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • 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

    • asaT
      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
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.