• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

One Positive On Celiac Panel, Some Questions
0

Rate this topic

8 posts in this topic

Recommended Posts

Hi, I just wanted to ask a few questions and get some feedback from others who are familiar with Celiac and gluten intolerance. After suffering for two years from some pretty nasty digestive problems, I finally convinced my doctor to run a celiac panel blood test on me. The Deamidated Gliadin IgA came back as a 38, while everything else came back as a negative. From what I've read, the IgA is a pretty solid indicator for Celiac, even if nothing else comes back. Can anyone verify this for me, or could it mean something else?

 

Because of my positive result for the IgA, my doctor set me up with a GI specialist in a couple of weeks so that I could get some more conclusive testing done. Though she also told me to stay away from gluten for the time being. I've also read that going off gluten before you have conclusive tests can mean a false negative when an endoscopy is done. I questioned my family doctor about this, and they insisted I should stay gluten free for the time being. I tried to ask the office of the GI doctor, though they refused to answer questions until they'd seen me. What are you're opinions about this?

 

For the last week I've kept to a strict gluten free diet, and I'm already feeling a lot better in a lot of ways. I'm torn though about whether it's more important to get a solid diagnosis, or if I should be satisfied just feeling healthier. Any comments or opinions are appreciated. I'm still pretty new to this whole idea, and none of my doctors seem to be giving me very much solid advice or seem to know much about it at all.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


If you need a proper diagnosis for some reason (for accommodations or even if it is just to make it mentally easier for you to stick to the gluten-free diet for the rest of your life) then you should continue eating gluten immediately and continue until testing is done.  If you just want to feel better now and get started on the gluten-free diet, then you can do so. It's a personal decision.

 

If you think you will want more testing in the future, I would get it over and done with now. Many people react even more strongly to gluten after being gluten-free for a time, and then they are unable to complete a gluten challenge and get accurately tested.

 

The DGP IgA is pretty specific to celiac. You have a 93-96% chance your positive test was from celiac disease. See p. 12 of this report: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Good luck.

Share this post


Link to post
Share on other sites

I had the same test come back positive and everything else was normal. My doctor also had me go gluten-free and said a biopsy wasn't necessary and she was sure that I have Celiac. I am torn though. Sometimes I have no symptoms at all and other days I feel terrible. I'm sure this is normal in the first few months. I really wish she would have done the biopsy for piece of mind, but I'm to afraid to eat gluten to get a positive biopsy :/ I'm also afraid it might be something else, but all of my other blood panels are coming up normal. The only thing that they noticed was that I am anemic and low on potassium. Do you suffer from that to??

Share this post


Link to post
Share on other sites
Ads by Google:


Hi Celiacmama83

 

Low Iron along with other minerals and vitamins is very common in Celiac Disease.  With celiac disease we don't absorb nutrients properly thus are deficient -- I was anemic my entire life...other vits and mins were just low until the later years pre diagnosis.

 

Hang in there -- time will help you become comfortable with your diagnosis without biopsy.  Should symptoms continue beyond the first six months to a year...then it may be time to take a look -- even without introducing gluten.

 

edited to add:

 

How long have you been gluten-free?  Although the antibodies drop quickly upon removal of gluten -- the endoscopy can still show damage for quite some time -- it is better to have it done before removal, but after is not without merit.

Share this post


Link to post
Share on other sites

Hi Celiacmama83

 

Low Iron along with other minerals and vitamins is very common in Celiac Disease.  With celiac disease we don't absorb nutrients properly thus are deficient -- I was anemic my entire life...other vits and mins were just low until the later years pre diagnosis.

 

Hang in there -- time will help you become comfortable with your diagnosis without biopsy.  Should symptoms continue beyond the first six months to a year...then it may be time to take a look -- even without introducing gluten.

 

edited to add:

 

How long have you been gluten-free?  Although the antibodies drop quickly upon removal of gluten -- the endoscopy can still show damage for quite some time -- it is better to have it done before removal, but after is not without merit.

I have been gluten-free for three months. I recently had my blood checked because of a petechial rash on my legs and they said my iron and potassium are still low, even being on a gluten-free diet. I thought that would go away :/ I also contacted the Celiac Center of Chicago to see if I could get a care package since my doctor said I definitely have Celiac. They asked for my blood work, I sent it and they came back saying that my test doesn't  support a Celiac diagnosis. My doctor said that the test that came back positive is very good. I'm just so confused and tired of all of this. I wish they would have done the biopsy because I'm still having tummy troubles, but not as severe as before. That is why I was thinking it might be something else. The ER doc said that I might have something mimicking Celiac?? I don't know what else to do. I'm going to continue the diet and hope everything will subside. I just keep having all this other stuff pop up now and its terrifying. Thanks for listening to me!!!

Share this post


Link to post
Share on other sites


Ads by Google:


I have been gluten-free for three months. I recently had my blood checked because of a petechial rash on my legs and they said my iron and potassium are still low, even being on a gluten-free diet. I thought that would go away :/ I also contacted the Celiac Center of Chicago to see if I could get a care package since my doctor said I definitely have Celiac. They asked for my blood work, I sent it and they came back saying that my test doesn't  support a Celiac diagnosis. My doctor said that the test that came back positive is very good. I'm just so confused and tired of all of this. I wish they would have done the biopsy because I'm still having tummy troubles, but not as severe as before. That is why I was thinking it might be something else. The ER doc said that I might have something mimicking Celiac?? I don't know what else to do. I'm going to continue the diet and hope everything will subside. I just keep having all this other stuff pop up now and its terrifying. Thanks for listening to me!!!

 

Happy to listen -- here is hoping you continue to improve quickly -- but just so you know -- not all of us improve quickly -- my celiac antibody levels all improved during the first six months gluten-free but it took nearly two years for my vitamins and minerals to all improve to normal levels -- again --- I am on the slow end of the curve...here's hoping you are on the better end of the curve :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,146
    • Total Posts
      939,919
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes I eliminated high glycemic foods. Eating only small amounts of carbs. No fruits, added sugars, starchy grains. Eating lots of fibrous veggies. Eating olive oil, as I don’t seem to tolerate the saturated fats or MCT oil. Allergic to nuts and seeds unfortunately.
    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
  • Upcoming Events