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

Another Who Needs Help With Results


Scout8501

Recommended Posts

Scout8501 Newbie

I know many people post on here with their test results, and I've tried looking at theirs to interpret mine. I'm still lost. Last year, I started seeing a new doctor. I have issues with depression, attention deficit, and have had bowel problems since I can remember. I am 24 btw. I described my bowel symptoms with the usual issues, and also that after I eat certain foods my stomach looks like I'm about 4 months pregnant. The doctor decided to run some blood work on me to check all of my levels. The nurse called me back and told me that I needed to take iron supplements, and that my celiac results came back positive. She said that the doctor wanted me to make an appointment with a GI doctor, and recommended one. I ended up moving out of state and never made it to the doctor. I never requested to see my results, and the doctor never brought up the celiac again. Fast forward to a few weeks ago when I went to see her again for some things. I mentioned something about the celiac, and she seemed confused. She flipped through my chart, and very quickly told me that there were antibodies present but that they were low, so I did not have celiac. I was there to get on medication for the depression, and wasn't even thinking about the celiac results. Yesterday, I finally requested a copy of my blood work results and these were the ones that stood out:

Test Name/In Range/Out of Range/Reference Range

FERRITIN (the 10 was circled)

FERRITIN/10/ /10-154 ng/mL

CELIAC DISEASE PANEL

IGA, SERUM/ /76L/81-463 mg/dL (this whole line highlighted)

GLIADIN AB (IGA)/<3/ /<11 U/mL

Reference range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

TISSUE TRANSGLUTAMINASE AB IGA

<3

Reference range:

<5 U/mL Negative

5-8 U/mL Equivocal

>8 U/mL Positive

Tissue Transglutaminase (TIG) - IgA positivity

offer both high specificity and sensitivity for

Celiac Diseas.

For patients with early Celiac Disease with subtle

histopathologic change (Marsch grade I-II), Gliadin

IgA is a sensitive marker.

For patients who are IgA deficient, additional

serological testing would be helpful. TTG-IgG and

HLA testing may help establish a diagnosis.

So, I did some research, and if my IgA serum levels are out of range, does that mean I am IgA defficient? I am not wishing for celiac disease, but when I found out I had it I was relieved to know the cause of my misery. I was relieved that I had control over that misery. I guess I am confused because the nurse told me one thing, but the Doctor told me something else. Should I request another panel? And this time, should I include the IgG? I am hoping someone may be able to help clear things up. I have an appointment to see her next week and she wants to check my iron levels again. I just want to go in there with the right questions.

Thanks for your help!


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

Have you been following a gluten free diet? If so how long and with what results?

Scout8501 Newbie
Have you been following a gluten free diet? If so how long and with what results?

I hate to say it, but I have not. I haven't been on my anti-depressents, and the foods that have been comforting to me contain gluten. I pay the price for it after, that's for sure. There are times I make a conscious effort to stay away from them, but it doesn't last long. I moved away last year, and there were not many foods available that were gluten-free. Since I have moved back to my hometown, I am making an effort to get healthy and take better care of myself. So knowing if my problem is definitely related to celiac disease would help with this.

Scout8501 Newbie

I have not received anymore responses to this question, and I'm hoping that by bringing this topic up once more that someone with an answer can help. I've continued to search for more answers with my appointment coming up in a few days, but have been uncessful in finding anything new. Everything I find confuses me more.

I have noticed that many people on here are not shy about explaining their symptoms, so I am going to give a little more history about my symptoms and situation in hopes that may help. A few years ago, I went to see a GI doctor for my stomach problems. My mother has ulcerative colitis, so I wasn't sure if I was starting to develop that since I was around the age she was diagnosed at. I had been extremely fatigued, which I blamed on the depression. I noticed that if I drank beer, ate breads, pastas, fried foods, pumpernickel pretzels, and lean cuisines (I found this out when I started weight watchers), I would get extremely bloated and constipated. The list of foods that do this to me goes on. And the bloated-ness was to the extreme. I looked pregnant all of the time because my stomach was filled with air. I couldn't pass it, and I would take gas-x all of the time which did nothing for me. Whenever my stomach is bloated, I always pass a lot of mucus. I don't pass stools, mainly mucus and sometimes a tiny bit of blood is mixed in with the mucus. I did find that taking B-12 complex vitamins I had started taking for energy did help with the bloating, but I doubt that has any connection to anything. I also had these "episodes" (for lack of a better word), that would happen out of nowhere. My stomach would start hurting so badly that I thought I needed to call an ambulance. I have been dealing with stomach pain since I was a small child, but this is way beyond just cramping and diahrea. I get really hot all of a sudden, feel nausious, and feel the need to have a bowel movement....but I get nothing. It goes on for what seems like an eternity, but is probably only about 5-10 mins. Then I get chills and sweat runs down me (I don't sweat much, even when working out), and then I'm able to use the bathroom. I use the bathroom for the next 30 mins or so, and then I'm fine. The only thing that stays with me about those episodes is the pain that follows the next couple of days. You know how you throw up a lot, or you cough a lot, and your abdominal muscles are sore? It's NOT that. It's like my intestines, or my insides hurt for a few days following my episodes. In the last couple of years, I've probably only had that happen about 15 times. Anyway, I told the doctor about these episodes, along with the bloating, headaches, constipation, diahrea, and mucus that I have ALL of the time. He ran blood tests and checked my thyroid, celiac, and other things but could not explain the cause. After the blood tests, upper GI (I think that's the test where you drink chalk and they x-ray you?), a colonoscopy, a pelvic sonogram and many doctor's bills later, he diagnosed me with a hiatal hernia, GERD, and IBS. I later found out that the doctor I saw maybe wasn't the best one to see because he doesn't try to dig into finding the cause of your problems. He runs a bunch of tests that makes him money, and when they turn up negative he gives up. After my tests, I would go back to him at his request and have to explain every single symptom over and over again. He seemed to never remember anything I told him, and didn't believe me when I told him about the episodes I was having. He told me that he was sure I was fine. I guess I was hoping for a doctor who would show a little more concern for my health and my issues.

Since then, I still have all of the symptoms listed above. I've also had two miscarriages. They were unplanned pregnancies, and both happened on a birth control that my body had "rejected. But I've read that infertility and celiac are related. I know that my symptoms may very well be IBS, but I would still like to exhaust all of my options for testing for celiac. My GP doctor I see is very nice, and I like her, I just don't feel that she is very knowledgable on thesubject of celiac.

So, I guess this brings me back to my original questions....Did I receive a full celiac panel? Nowhere on the results do I see IgG. And if my IgA Serum was out of range, is the negative TTG an accurate diagnosis and all I need?

Thanks in advance if you are able to provide any suggestions.

ang1e0251 Contributor

I'm not knowledgable enough about tests to answer that for you. You are still eating gluten so just get tested again. Order the correct tests. Then ask for your own copy of the tests and post them here. If you are gluten intolerant and do not have celiac disease, the tests will all be negative but you will still need a gluten-free diet.

Scout8501 Newbie
I'm not knowledgable enough about tests to answer that for you. You are still eating gluten so just get tested again. Order the correct tests. Then ask for your own copy of the tests and post them here. If you are gluten intolerant and do not have celiac disease, the tests will all be negative but you will still need a gluten-free diet.

I plan to order the test again, I just am not sure which to ask for. I've been reading in other forums that after going on a gluten-free diet that their depression and attention deficit have improved tremendously. That alone makes me want to stick to a gluten-free diet.

Thanks so much for your help and answers!

gfb1 Rookie
[snip]

Test Name/In Range/Out of Range/Reference Range

FERRITIN (the 10 was circled)

FERRITIN/10/ /10-154 ng/mL

CELIAC DISEASE PANEL

IGA, SERUM/ /76L/81-463 mg/dL (this whole line highlighted)

GLIADIN AB (IGA)/<3/ /<11 U/mL

Reference range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

you are certainly IgA low, if not clinically deficient. with a value on the 'border' of low i would make sure and follow the suggestion noted below on the laboratory analysis.

For patients who are IgA deficient, additional

serological testing would be helpful. TTG-IgG and

HLA testing may help establish a diagnosis.

ang1e had good advice.

at the risk of banging yet another drum;

take this to your doctor...

Open Original Shared Link

note the 2nd rectangle in the right-most column.

sorry to hear of all your problems, some are perfectly miserable.

hopefully, you can get this diagnosis either confirmed or move on to another solution.

good luck!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast
For patients with early Celiac Disease with subtle

histopathologic change (Marsch grade I-II), Gliadin

IgA is a sensitive marker.

Sorry for the tangent... do you know what lab (LabCorp, Quest, etc...) did your test? Some labs/doctors are starting to ignore anti-gliaden, which I think is a huge mistake.

I agree that you should ask to be tested again. Try to get an endoscopy! For someone like you who's IgA deficient, that's probably your best chance to get an accurate diagnosis. And no matter what the results are... consider giving the gluten-free diet a try for at least a month. In my case, the diet made such a difference I knew there was no way I could ever go back to eating gluten.

Scout8501 Newbie

Thank you gfb1 and Mother of Jibril for your responses.

gfb1,

I will definitely take that chart to my doctor this week.

Mother of Jibril,

The lab was Quest on Demand. Hopefully I will get more answers after my next blood test. If not, I do think I will consider going gluten-free for a trial period to see how I feel.

Thank you all so much for helping me out! I really appreciate it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,097
    • Most Online (within 30 mins)
      7,748

    Karen Lappe
    Newest Member
    Karen Lappe
    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

    • trents
      I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery.  One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
    • Hauama
      I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food? 
    • Kiwifruit
    • trents
      Thanks for following up with us on the results. This might be helpful to you now:  
    • Kiwifruit
      Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
×
×
  • Create New...