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

I Also Need Help With Test Results!

Laura5999

Recommended Posts

Laura5999 Newbie
Laura5999
Posted

I am a 26 year old female who up until now, possibly, has been completely healthy. My mother was diagnosed with celiac about six months ago, and she was not diagnosed until her symptoms were very severe. I have learned a lot about the disease and the gluten-free lifestyle since then, but I am very "stuck" as to what I should do next regarding my own testing.

I began having a rash very similar to DH about a year ago--I thought I was having a reaction to perfume or something in lotions, etc. In the last six months, however it has gotten worse and I have not been able to find answers for it.

Given the strong family hx, and my rash, I got the Celiac antibody panel done last month. These are the results:

TTG IGA 4

Gliadin IGA 28

Immunoglobin A 193 (65-421 MG/DL)

The ranges for the TTG IGA and Gliadin IGA are 20 and below are negative; 20-30 weak positive; 30+ moderate to strong positive.

I am VERY concerend about the Gliadin IGA results. However, my general practice doctor had the nurse called me to tell me I had nothing to worry about! At this point it seems like my body is manufacturing the Gliadin antibodies, but perhaps I don't have intestinal damage yet? I am wondering what kind of specialist to see next--and I have been considering going gluten free, but it seems like the rash can take a long time to subside even after gluten-iodine dieting, and if I become gluten free, testing could produce false-negatives.

Thank you anyone who can give me a little guidance because my doctor doesn't seem to have much knowledge on this topic.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like your doctor isn't really knowledgable about celiac. Since you have a rash that may be DH you could go to a derm who is knowledgeable about DH and ask for a biopsy letting the doctor know you came back positive on the celiac panel. They need to biopsy beside the rash not the rash itself and they need to be looking for DH.

If you are going to persue an endoscopy stay on gluten until that is done. If you are not going to persue further testing then get started on the diet. False positives are extremely rare if not nonexistant while false negatives are quite common. You have positive blood work and some doctors would diagnose with that but apparently your doctor doesn't think your positive enough yet. IMHO it is better to go gluten free now rather than continuing to damage your system long enough for your blood tests to move into the strongly positive range.

Laura5999 Newbie
Laura5999
Posted
  • Author

Thank you for your advice. I do think I am going to pursue a skin biopsy. My hope is that this will further confirm the DH. After the biopsy I am going to go gluten free--I've already started cutting some out and done things like switch from NSAID pain relievers and iodized salt to see if it relieves the skin reaction. I am a little scared, as I love things like pasta and bread, etc. But it's good to know there are so many individuals who do so well with this, and I am glad I have a great mother with celiac to help me with the transition!

Again--thanks!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your advice. I do think I am going to pursue a skin biopsy. My hope is that this will further confirm the DH. After the biopsy I am going to go gluten free--I've already started cutting some out and done things like switch from NSAID pain relievers and iodized salt to see if it relieves the skin reaction. I am a little scared, as I love things like pasta and bread, etc. But it's good to know there are so many individuals who do so well with this, and I am glad I have a great mother with celiac to help me with the transition!

Again--thanks!

You'll still be able to have pasta and bread. There are quite a few different kinds and you will find ones that you like. Having a Mom who has already gone through the changes will help a great deal.

Hopefully you will be feeling much better soon.

hsmomof6 Rookie
hsmomof6
Posted

Ravenwoodglass is right, positive IGA added to your family history and symptoms is pretty telling. I had a Celiac panel and the only positive test was the AGA IGA (it was over 60). The NP at the GI office told me I was negative for Celiac, but had some immune problem. I took the results to my PCP and she diagnosed me Celiac positive with the IGA and symptoms. My PCP happens to be Celiac herself, so she was much more knowledgeable about it. She said that the GI NP was not very knowledgeable about Celiac test results. My doctor, thankfully, didn't want me to do a biopsy because I would have had to go back on gluten (I had gone gluten-free right after the test results because of my own research) and she didn't feel the need to put me through that to get a biopsy that might or might not tell us what the blood test and symptoms had already shown to be true.

Archived

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

Go to topic listing

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

      Shingles - Could It Be Related to Gluten/ Celiac

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

      My only proof

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

      Challenges eating gluten before biopsy

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

      Challenges eating gluten before biopsy

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

      Stomach hurts with movement

      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...
  • 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
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      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
      My only proof

      By Mari · Posted

      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
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      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
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      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
      Stomach hurts with movement

      By Scott Adams · Posted

      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.