Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

One Positive On Celiac Panel, Some Questions

Ikgbrd

Recommended Posts

Ikgbrd Apprentice
Ikgbrd
Posted

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.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

You are right.  You should not stop eating gluten if you want to be diagnosed for Celiac.

 

 

Open Original Shared Link

Ikgbrd Apprentice
Ikgbrd
Posted
  • Author

But should I be more worried about a proper diagnosis, or just feeling better day to day?

nvsmom Community Regular
nvsmom
Posted

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: Open Original Shared Link

 

Good luck.

  • 2 weeks later...
Celiacmama83 Newbie
Celiacmama83
Posted

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??

GottaSki Mentor
GottaSki
Posted

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.

Celiacmama83 Newbie
Celiacmama83
Posted

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!!!

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

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 :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...