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

Lab Results


Carin3

Recommended Posts

Carin3 Rookie

Hi! I was recently diagnosed with Celiac in Novemember 2009. I have barely any of the GI symptoms of celiac but almost all the non-GI symptoms of celiac!! I started seeing a hematologist for chronic iron deficency anemia which didn't improve with iron pills. She sent me to a GI doc who did a endo and colonoscopy. My biopsy came back saying small bowel mucosa showing minimal loss of the villous structures (mild blunted villi); increased density of intraepithelial lymphocytes and hyperplasia of the crypts. Marked increase in intraepithelial lymphocytes of superficial villous epithellum. So one GI doc didnt think it was celiac and sent the biopsy for a second opinion (he also told me not to go gluten-free if I could control my anmeia with iron pills!)to yale. There biopsy report reads: We concur with the original pathology interpretation. biopsies reveal normal to minimally abnormal villous architecture. There is a definite increase in intraepithelial lymphocytes. Then in the end of November I got a IV iron transfusion (my hgb was dropping). November 1st I started going gluten free. I do feel better but unlike a lot of you I don't have the GI symptoms so it is hard er for me to tell. A couple weeks ago I went back to the hematologist and my hgb is within the normal range for the first time in like 15 years!! After the IV iron in November she did not have me take any supplemental iron. Before I forget before going gluten-free the GI doctor did the TTG IgA and IgA both normal. I dont mind being gluten-free but want your opinions as to if you think I have celiac or not. I would love to hear what you have to say!! Thanks!! Now moving on to my son. He is 4 y.o and has had GI issues since he was 2 (well he did have reflux as a baby). He has had about 5 endoscopy's and one colonoscopy. His first endo at 2 they found a large nasty stomach ulcer in the fundu area of the stomach and they found chronic reflux esophagitis, about a year later they found a duodental ulcer (while on reflux/ulcer meds), duodenitis and reflux esophagitis, another newer endoscopy showed the duodenitis and esophagiits. During each endoscopy they have taken biopsies for celiac which have come back negative-although the doctor DID NOT know that I may have it. He freuqently complains of stomach pain,throat pain and we have a lot of problems with him pooping in his underwear (although that seems to come and go). We recently had to switch pediatric GI docs b/c our stopped taking insurance (and this may have been a blessing). We are now seeing a peds GI at CHildrens National Medical Center in DC (this new doc does know about me). He ordered a ton of lab work (including celiac panel and celiac genetic). All his lab work came back normal including the celiac panel (but remember mine was normal as well). I just got a call today that said he has the gene for celiac but is low risk. I am very confused by that and I hoping some of you might explain. If I do have celiac and he carries the gene wouldnt that put him at a higher risk for getting celiac? I realize the doctor is busy and we have only seen him once so far so he might have forgotten that I thinki I have celiac. He is getting a endoscopy and ph probe (never had that done to check out the reflux) on Tuesday b/c he continues to have some belly pain and its not good for him to continue to have the duodenitis. Any opinions would be helpful. I am sure tuesday I can find out more about what the genetic testing said but would love to hear what you all have to say. Every test any doctor has ever done on my son has been normal and they have never been able to firgure out why he had the two ulcers and the duodenitis. I am wondering if we could finally have an answer or not. SORRY this is so long but sooooo confused about myself and my son. I have found these forum VERY helpul in the past 4 months and appreciate everything. Thanks!!!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Your bloodwork isn't very useful. They (apparently) only tested for IgA antibodies, and not a total IgA count or IgG antibodies. IgA deficiency is fairly common in celiacs, so without a total IgA count, the IgA antibody tests are useless.

ravenwoodglass Mentor

I am going to put it short and sweet. I would give him a couple of months trial on the diet after all the testing is done. False negatives in children are even more common than in adults.

string bean Newbie

Your bloodwork isn't very useful. They (apparently) only tested for IgA antibodies, and not a total IgA count or IgG antibodies. IgA deficiency is fairly common in celiacs, so without a total IgA count, the IgA antibody tests are useless.

I had a celiac panel done and the only thing that came back high was my total IgA. So, I understand that to mean I am not IgA deficient, but what does an abnormally high total IgA mean?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Kathleen JJ posted a topic in Traveling with Celiac Disease
      0

      Ski trip with Celiac son - preparation advice please

    2. - Wheatwacked replied to BoiseNic's topic in Dermatitis Herpetiformis
      10

      Skinesa

    3. - Wheatwacked replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    4. - disneyfamilyfive replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight

    5. - Scott Adams replied to disneyfamilyfive's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test result insight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,343
    • Most Online (within 30 mins)
      7,748

    Lonna wood
    Newest Member
    Lonna wood
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kathleen JJ
      Hi all,  Two weeks ago we learned our 7 your old has Celiacs and we are of course finding our way in his diet. However, we booked a skitrip a few months ago that will take place in February. We're going to the same hotel we went last year. The trip is non refundable so now I'm already starting to think how we will do this.   I've contacted the organization who was really really understanding and supportive. They've worked with this hotel for many years and the hotel (and restaurant of course) is prepared to do what they can. Storing and heating/preparing food that we bring is not a problem for them (which is already a huge relief) nor is providing fruits and vegetables (cucumber fi) to put in a lunch box as he will not be able to eat in the restaurants on the slopes. I checked, the ski area has 3 restaurants that offer gluten free options, but he is only 7 and with 7 year old's there's always the additional hurdle of 'yuk, I don't like the sight/taste/smell of it or I don't know it so I won't eat it' factor the consider 🙄. So we'll pack a lunch for him to take. [side question: if there should be an accidental intake and he gets a reaction, how strongly do we have to expect this: will he poo his pants? Will he be able to hold till he gets to the toilet at the end of the slope? Will he be able to still stand or will the pain make him having to lie down? We had the diagnosis rather by accident so have no experience with 'normal' symptoms or how violent they are and we would like to inform the ski instructors]   He loves oatmeal and we will bring gluten-free oatmeal for breakfast so that will be covered too, but for diners I'm already worried.    So my question is: Do you have tips for childproof gluten-free meals that could be easily heated or prepared in the hotel without risk of contamination?   Thank you for your reactions... Kathleen
    • Wheatwacked
      Eesearch indicates that a significant portion of people with dermatitis herpetiformis (dermatitis herpetiformis) can experience worsened symptoms when exposed to high levels of iodine; however, not everyone with dermatitis herpetiformis will react to iodine, and the exact percentage depends on individual sensitivity and dietary factors.  I don't have dermatitis herpetiformis, but iodine is essential.  I would start with 1 drop of Liquid Iodine (KI + I2).  One drop is 50 mcg and evaluate.  The RDA for iodine is 150 mcg a day.  It's $8 for a 2 ounce bottle, about 1000 drops per bottle from pipingrock.com. To me it seems logical that with no gluten coming in, eventually your skin would run out of gluten for the iodine to attack.  One of iodines functions is to break down defective cells to make room for new cells.
    • Wheatwacked
      Given your symptoms and family history and your low gluten consumption before the blood test, eventually you will be diagnosed, but it may take years.  Ask your doctor about nutrition deficiencies due to malabsorption.  Vitamin D deficiency is almost ubiquitous. Unless your doctor has an answer to your health issues, once you've pursued a diagnosis to your satisfaction I would suggest a trial period of gluten free.  In the meatime,  Mayo Clinic research indicates a first degree relative of a diagnosed Celiac is 42% likely to also be Celiac. Dermatitis herpetiformis causes itchy bumps and burning blisters as a result of a gluten sensitivity that makes your immune system overreact.  Are You Confused About Your Celiac Disease Lab Results?
    • disneyfamilyfive
      Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 
    • Scott Adams
      It sounds like you're navigating a lot right now, and it’s good that you’re being proactive about your health given your family history and symptoms. Based on the results you shared, the elevated IgA Gliadin and IgG Gliadin antibody levels could indicate an immune response to gluten, which may suggest celiac disease or gluten sensitivity. However, your tissue transglutaminase IgG (tTG-IgG) result is within the normal range, and your total IgA level is sufficient, meaning the test was likely accurate. While these results might point towards celiac disease, the diagnosis often requires further interpretation by your doctor, especially in light of your symptoms and family history. Your doctor may recommend an endoscopy with a biopsy to confirm the diagnosis, as blood tests alone are not always definitive. In the meantime, you might want to avoid making dietary changes until you discuss the results with your healthcare provider, as going gluten-free before further testing can interfere with an accurate diagnosis. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. This section covers your two positive results: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)    
×
×
  • Create New...