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

My Results Are In

SAHM2one

Recommended Posts

SAHM2one Contributor
SAHM2one
Posted

My doctors nurse just called and said that my celiac panel is negative but my IgA came back low. What does this mean? I went gluten free today and feel great, now stomach pains, no headaches, no joint pain.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It means that because your IGA levels are low you may have a false negative.

The truest test is the diet and if your improving on it and you do not plan on having an endoscopy for diagnosis then there is no reason not to continue. Do be aware though that if you are gluten free and then later decide to challenge for a biopsy you will need to challenge for at least 3 months for any chance for the biopsy to be positive. And that challenge may make you much more ill than you were before you went on the diet.

Welcome to the board and ask any questions you may need.

lizard00 Enthusiast
lizard00
Posted
My doctors nurse just called and said that my celiac panel is negative but my IgA came back low. What does this mean? I went gluten free today and feel great, now stomach pains, no headaches, no joint pain.

Welcome to the board!!! I am IgA deficient, too. Assuming that you just went gluten-free today, if you want to be retested, do it NOW and ask them to run the IgG versions of the Celiac panel. I wish I would have known that back in Dec 07 to have been retested myself. I ended up being genetically tested in May of this year, and thankfully ended up with a wonderful GI who knew what was up.

Anyway, most GP's (if that's who you went through) know relatively little about Celiac, and chances are that they didn't run the IgG tests. It will require another blood draw, but if you are anything like me, you won't stop until you know for sure what's going on.

Otherwise, I'm glad that you already feel better. I had stomach pains and nasty headaches. Living with those everyday was absolutely horrible. I stuck with the gluten-free diet, even though I had negative blood work simply because my headaches went away.

Wish you the best!!!

SAHM2one Contributor
SAHM2one
Posted
  • Author

If they didn't do an IgG then I will go and get one today! Being gluten free yesterday and today shouldn't effect that test should it?

ShayFL Enthusiast
ShayFL
Posted

Hopefully not. But get it done ASAP!

Again, the diet is the only true diagnosis. And you are feeling better. Yeah!!

happygirl Collaborator
happygirl
Posted

Take this in with you if your doctor considers you IgA deficient.

Open Original Shared Link See "One more thing" on page 2

SAHM2one Contributor
SAHM2one
Posted
  • Author

Thanks again. I am feeling better! Still have some symptoms but I can't expect them to go away over night. I am eating without feeling sick afterwards now though! I am waiting to hear back from my doctor, I called this morning. I am not think he is going to be that helpful though, he has already said he doesn't know what is wrong with me and sent me to another specialist who blamed everything on my gastric bypass. I have a feeling I am going to have to do this on the diet alone. If it keeps working I will just have to go with it.

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

Celiac.com Sponsor (A8-M):


SAHM2one Contributor
SAHM2one
Posted
  • Author

I don't know what to do. My doctor called back and they didn't run an IgG and he said he won't order it. I can call my GP and see if he will do it but he probably won't since his friend, they work for the same practice, said no. Instead they want to send me to UNC.

Thankfully I have a great Gastro doc up there so I called him and am waiting to hear what he says. Hopefully someone can help me out. If this isn't celiac disease then someone needs to come up with some ideas!

Jestgar Rising Star
Jestgar
Posted

You may never get a positive diagnosis for Celiac. Many people don't. Fortunately the choice of what to put in your mouth is yours. If you feel better without eating gluten, then don't eat it. Yes, the change-over is difficult, but once you've gotten used to it, it's just like any other carefully controlled diet.

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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.