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

The Great Testing Saga

DarkIvy

Recommended Posts

DarkIvy Explorer
DarkIvy
Posted

Hey all.

I posted a couple weeks ago about my initial stint with being gluten free, how celiac runs in my family and I decided to try it to see if I would feel better.

I got back on gluten in time for my regular check up with my regular doctor. I'd been on gluten for about 5 days and when I brought up my concern about celiac with her, she decided it would be a good idea to run some blood tests. They came back negative, which isn't surprising... I hear it happens a lot and since I had just started a "normal" diet again...

I FINALLY saw a gastroenterologist yesterday. I've been eating gluten again since Friday. I now have a biopsy scheduled for two weeks from now and they drew more blood to do some "serum" test I think, and I'm supposed to do a couple of stool tests in the meantime. It's pretty intense. My regular doctor faxed over my blood test results and the GI said sometimes there are people who don't produce IGA in the first place and that's why the tests don't come up positive. He said something about another patient that has a similar ancestral background as I do who doesn't produce IGA... I'm not going to lie, I'm pretty confused about all of these tests and what they do.

So long story short, I'm stuck on gluten for the next two weeks and am already kind of a mess. I can't drive much anymore because I start to get very fuzzy and drive pretty poorly. I cry at random things. I'm exhausted and can't get much done. Oh, and all of the bowel symptoms to boot. It's awful.

To top it all off, I found a blister on my arm. It's itchy and painful and definitely not a bug bite. It oozes and it kind of hard and bright bright red. I've had very similar blisters before on my ankle... about three of them. It started last summer and I assumed they were nasty bug bites... until they came back a few months later in the exact same place. They come and go now and are really itchy. When I went to the GI, I wanted to show him but they were faded already. But now I have this new one on my arm that looks very similar to the ones on my ankle. WTF? Could it be DH? Am I overreacting and freaking out in the midst of all of this junk going on? I understand that one can have celiac diagnosed with a biopsy of a DH blister... would it make sense for me then to call my dermatologist and see if I can get in before the endoscopy? If they could just diagnose it that way, it would be ten times easier for me. I need to be gluten free again as soon as possible... I've got a life to live and this is interfering like none other.

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

Celiac.com Sponsor (A8-M):


Murph Newbie
Murph
Posted

Trying to get a dermatologist appt sure makes sense to me. DH = celiac is what I've always heard.

And u certainly need to be gluten-free asap.

I don't think being on gluten for 5 days for the 1st test was anywhere near long enough for a valid test. Other posts go over some recent research on this, but like everything else in the celiac world I'm sure it varies greatly.

A few years ago, a Stanford doc (whose name I can't even say w/out using "jackass" as a middle name) kept trying to get me to eat gluten for a month!

DarkIvy Explorer
DarkIvy
Posted
  • Author
Trying to get a dermatologist appt sure makes sense to me. DH = celiac is what I've always heard.

And u certainly need to be gluten-free asap.

I don't think being on gluten for 5 days for the 1st test was anywhere near long enough for a valid test. Other posts go over some recent research on this, but like everything else in the celiac world I'm sure it varies greatly.

A few years ago, a Stanford doc (whose name I can't even say w/out using "jackass" as a middle name) kept trying to get me to eat gluten for a month!

I didn't end up calling the dermatologist today. I keep looking at my ONE new blister like I'm insane: it probably is just a pimple. My dad's convinced it's not, my sister is convinced it is a zit. Besides, I was too tired to drive.

My dad's planning on calling my GI tomorrow to see if maybe something can be done about the situation. This clearly isn't working, and obviously gluten is an issue. My dad tends to be pretty assertive, so maybe something will be accomplished by it all. *Sigh* I feel so deteriorated these days...

Archived

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

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


  • Member Statistics

    • Total Members
      131,782
    • Most Online (within 30 mins)
      7,748
    BH1951
    Newest Member
    BH1951
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.