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

Help Please


HebrewRose

Recommended Posts

HebrewRose Newbie

I recently had my antibody levels tested and all but my gliaden IgG were normal. IgG was 52 (ref 0-10). My family doctor tells me he's fairly sure I have celiac given my family history of the disease as well as my symptoms.

I'm concerned though because when I asked for a referal to a GI specialist for a biopsy, he told me that a biopsy was unneccessary and that a simple colonoscopy would do. He also told me to go ahead and begin a gluten-free regime. My GI appointment isn't for another month and a half, and I'm concerned that if I go gluten-free, my body will already be healing and will give inaccurate results. I have no idea what to do about this.

Any suggestions?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Your doctor is ill informed. You are smart to question him. This is the test that you should have:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Get a copy of your result and post then here. A colonoscopy will not detect Celiac, but it might be wise to have a base line test, especially if you have had issues. That is done through the small intestines with an endoscopy/biopsy, to test for damage due to Celiac, although, no current testing is conclusive.

It is important, should you pursue and endoscopy exam, you must remain on a full gluten diet. If you can accept a diagnosis, based on positive dietary results and your family history, you can begin the diet immediately. Many people here have taken that road.

We can't tell you what to do, only to arm you with facts to make your own decision.

HebrewRose Newbie
Your doctor is ill informed. You are smart to question him. This is the test that you should have:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Get a copy of your result and post then here. A colonoscopy will not detect Celiac, but it might be wise to have a base line test, especially if you have had issues. That is done through the small intestines with an endoscopy/biopsy, to test for damage due to Celiac, although, no current testing is conclusive.

It is important, should you pursue and endoscopy exam, you must remain on a full gluten diet. If you can accept a diagnosis, based on positive dietary results and your family history, you can begin the diet immediately. Many people here have taken that road.

We can't tell you what to do, only to arm you with facts to make your own decision.

Thanks. Those are the tests I had, and like I said the only one that wasn't normal was the anti-gliadin IgG. But I was kind of suspicious about the colonoscopy. I appreciate your advice a lot though.

sbj Rookie

Best of luck getting a proper and accurate diagnosis. Sounds to me as if your intern is not well informed.

My opinion only and no substitute for a real doctor, you don't have celiac but might have a food allergy, Crohn's, or some other auto-immune disease. It therefore makes sense to have a colonososcopy (depends on your symptoms). Since you almost for sure do NOT have celiac you do not need a biopsy via endoscopy to confirm that. If you still think you have celiac - which is not likely given your test results - you can avoid the endoscopy and instead try a genetic test. If you're negative for the genes then you really have no possibility to acquire celiac.

This is the typical situation and I'm sure others would disagree. There are always exceptions but it makes sense, to me, to start out with the more likely stuff.

When IgA levels are normal (anti-endomysial IgA and anti-tissue transglutaminase IgA) this means that your body is not attacking itself because of gluten and you therefore don't have celiac. BUT, your IgG level is abnormal. This means that your body might be attacking gluten (as opposed to itself).

"Many normal individuals without CELIAC DISEASE will have an elevated antigliadin IgG, causing much confusion among physicians. If a patient

sbj Rookie

By the way:

"he told me that a biopsy was unneccessary and that a simple colonoscopy would do."

A biopsy via endoscopy is the the procedure that is relatively simple and mostly painless - at least it was for me.

A colonoscopy, on the other hand, is a very difficult thing to go through. It is by no means 'simple.' It takes all day to prepare, can't eat for a day plus, you are under a local anesthetic, you need a driver, and you have to sign releases in case you are injured. It's not simple and it's not easy.

If I were you I would maintain a normal diet until all of this testing is complete. I would not start the gluten-free diet unless I had to, or unless you really want to even if you don't have celiac. Your intern is probably recommending you stop eating gluten foods because of your family history and symptoms and NOT because of your test results. Remember, the high IgG levels don't necessarily mean you have a problem with wheat (the G in IgG does not stand for gluten). It could be some other food entirely causing your high IgG levels (or even a virus). You might still be able to enjoy wheat products! I'm hoping you can.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748

    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.