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

Pre-testing But I'm Willing To Put Money On The Outcome...


Arcolite

Recommended Posts

Arcolite Newbie

Hi, new poster but a long time lurker.

My family and I are currently going through the testing process but we're more or less certain that it's either a extreme wheat allergy or celiac. Only the tests will tell for sure.

My mother and my sister have slightly different symptoms and reactions, to me, but still off the same foods.

Personally I have been suffering with an unknown stomach complaint for the last 8-10 years and despite countless trips to the doctor over those years, not once was celiac or wheat allergy ever mentioned. My mother and sister have had the same expirience with the same doctor.

So far I have had medication for IBS which did nothing, Anti-Depressants (which did help me cope, but didn't stop the symptoms) and lots of counselling which again, helped me cope, but didn't solve anything.

My symptoms range from...

Panic Attacks and Anxiety during bad stomach episodes. I've suffered from Emetophobia since I was tiny but only started getting anxiety and panic attacks when the bad guts started.

I have been Underweight since I can remember and no matter what I eat I cannot put on weight. I have very little energy and feel cold most of the time.

Before I started the wheat free diet I used to get very bloated and my stomach is was always tender and uncomfortable to touch.

My BM was irregular and quite often loose. The doctor used to link this with IBS, but it could also celiac.

I can always tell when I'm about to have a reaction to something I've eaten because I get very tired and irritable after eating, my stomach tenses up in a knot and I get very flushed in the face followed by cold chills and cramps. If the reaction is bad I'll end up with anxiety and panic attacks then being off food for the next day and my BM will be loose and shall we say "toxic".

I'm not a gambling man, but as all the IBS and anxiety stuff didn't fix the problem, Celiac is looking a pretty good bet right now.

When I read the sypmtoms for the first time it was like a tick sheet.

Why did the doctors never think to check for this sooner? Thesame doctor missed it not just once, but with three different people with similar complaints (Mum and Sister) :(


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



Celiac.com Sponsor (A8-M):



skyyblues Newbie

Hello - I can relate.... I have had stomach problems as long as I can remember but just thought it was just me. I have an Aunt that is the same way. I have had horrible rashes and exzema for the last 2 2/1yrs. Doc after doc has either treated me as nuts or shoved prednisone on me. I have been to regular docs, dermatologists, allergists, and none of them had ever suggested anything other than steroids and more itch pills. I happen to go to my "new" regular doc a month ago when I was having a semi bad breakout and he looked at me and said "Has anyone ever tested for Celiac Sprue?" I was like what??? He did a blood test - negative- not suprised as have been on steroids since last Nov. I looked up Celiacs and thought wow! I have been gluten free for 2 weeks and have not felt this good ever! I can eat without having to know where the bathroom is.... I had one very bad reaction out of town - ER and all - so when I came back my doc suggested a endoscopy to confirm. I knew I would have to go back to eating "it" in order for the test to be done. I went for my consult today and cried when I agreed to eat "regular" again for 4 weeks. I went out to dinner tonight and I am already starting to break out. I am not sure if I will make it but will try. I have both a endoscopy and colonoscopy scheduled to confirm Celiacs and/or rule out anything else. They took 6 vials of blood today to run a bunch of other tests as well. I can't believe I have finally found 2 doctors who care enough to look a little further and actually try to find out what is wrong.

Well I have rambled long enough. Time for an itch pill and bed. I am scared to wake up tomorrow and see what I look like... :( ........Good Luck to you and let me know how everything works out. I can tell you one thing though no matter what they find in my tests I am going back to gluten free as soon as this h--- is over!!!!

ang1e0251 Contributor

Welcome and I'm sorry you are feeling so crappy. Hang in there for your testing. I think I would call the GI office every day and ask if they have any cancellations so you could move the time of your test up.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,087
    • Most Online (within 30 mins)
      7,748

    C.E.L
    Newest Member
    C.E.L
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dc91
      Perfect, I guess I won’t know for certain until I know if I need a endoscopy/biopsy. My father is also celiac so I’m guessing that’s where I’ve got it from. My doctors has told me to start a gluten free diet which I’m 4 days into but it would be nice if I could have my last hurrah at eating gluten again. I’ll ring in the morning and ask if she’s referred me for an endoscopy/biopsy. 
    • trents
      The tTG-IGA is considered the centerpiece of celiac disease blood antibody testing. Your test results exceed 10x normal range so you could be officially declared to have celiac disease without going through an endoscopy/biopsy of the small bowel lining. As you used the term "bloods" to refer to your antibody testing, I am assuming you live in the UK and it has become common practice there since the COVID pandemic years to dispense with the endoscopy/biopsy when the tTG-IGA score reaches 10x normal. Though I would not go so far as to say it is yet a universal practice to do so. So, I would hold off on the gluten free diet until you find out if you will be required to undergo an endoscopy/biopsy of the small bowel. If you quit gluten now, healing of the small bowel lining will commence and it may generate a false negative biopsy by the time you get to the procedure. So, ask that question of your doctor. That is, if he feels a need to refer you to a GI doc for an endoscopy/biopsy.
    • GeoPeanut
      I had no idea! Thank you. 
    • Dc91
      Hi Cristina, 0-6.9 is normal range and I’m >100
    • cristiana
      Hello Dc91 and welcome to the forum! Could you first just add the lab ranges for us for your TTG IgA Antibodies as they vary?   Cristiana  
×
×
  • Create New...