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

New Diagnosis


pattywacky

Recommended Posts

pattywacky Newbie

Hello

I have been having alot of medical problems lately. I have been sick for over 2 months, most doctors thought I have chronic fatigue syndorme. I have had every blood test taken and one of the things that was odd was a antigliadin antibody panel. My doctor said it doesn't necessarily mean I have celiac but on both the IGA and IGG I tested moderate to strong positive 38H. I know you have to have a biopsy to confirm, but I have been on a wheat free gluten free diet for 6 weeks. I am getting better but not sure if it is because of the diet or all the nutritional supplements I have been taking.

I don't relish having the biopsy done and understand you have to start eating wheat again. Also, my Mom was told she had celiac a few years ago by a skin doctor because of an itching rash she had. She has been on the diet for 2 years and no more rash. So, my question is can I rely only on the IGG and IGA test? Is there ever a false positive on these tests?

Thanks for your help.


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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast

Hi Patty,

Some doctors will tell you that they get many false positives, but they are wrong. You are more likely to get a false negative in regards to both the blood test and the biopsy. What a doctor refers to as a fasle positive is a positive blood test followed by a negative biopsy. There are many reasons for a false negative in the biopsy. First, your diet. If you have not been eating much or any gluten in a while this can affect it. Some people need to consume a lot of gluten over a long period of time in order to show enough damage. And the amount of damage is different for everyone. Some have no damage, but lots of symptoms and others have a lot of damage and few (or no) symptoms. Then when the test is performed, the doctor has to (by chance) take a tissue sample from a portion of the intestine that does show damage, since the damage can be very spotty, and then the lab has to have very skilled and knowledgable doctors adn lab techs working there, and very few know what to look for with the tissue samples. They want to see total damage of the villi, but even a little bend in the tips of the villi is Celiac Disease. Most are not current in their education of Celiacs.

Here is my opinion. I have just been through two months of consuming more gluten every day than I had ever consumed in a week, in preparation of the biopsy. I feel like I did way more damage to myself than I should ever have had to do, but I wanted accurate results. I still won't get the results back for another week, but there is even a chance that it will be negative. I know I have celiac disease, since I have the gene, and I tested positive in the antibody stool testing. My children are being tested now, and they most likely have it too. Your mother has celiac disease, and it is hereditary. You are positive on the antibody test, and you feel better off gluten. I would not recommend hurting yourself further for the biopsy, but if you feel you need confirmation, you could check out Open Original Shared Link , they offer a stool test for antibodies, and a gene test for celiac disease. I would recommend the gene test, since you already know you are producing antibodies. The gene test will confirm that you carry at least one of the genes known to be responsible for Celiac Disease. These are HLA-DQ2 and HLA-DQ8. I used them for my testing, before the biopsy, since my original blood tests came back negative and my doctors refused further testing. After I recieved my diagnosis through Enterolab my doctor agreed to the biopsy. I have my own personal reasons for needing the biopsy, but unless you feel you need it, it is not necessary. Not every doctor will accept the Enterolab tests, since they are fairly new and it takes a while for the medical field to catch up to knew technology, but it isn't really for the doctor it is for you and your own peace of mind. Dr. Fine is a Celiac himself and he started Enterolab for the purpose of reaching the public and making testing more readily available to them, since the medical field has been letting too many Celiacs fall through the cracks, so to speak.

I hope I have helped answer some of your queastions. Feel free to e-mail me or just post here if you have any more. And I am glad you (and your mom) are feeling better on the diet.

God bless,

Mariann :D

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. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,131
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.