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

Update


missj

Recommended Posts

missj Rookie

So I got my med records out and looked over them. The only Celiac thing that was tested was the following:

Immunoglobulin A 172

TTG Antibody IgA <3

Gliadin ANtibody IgA <3

I had been told on one of my previous posts that there were more than just that. I know at the time of testing I was on basically a gluten-free diet. If I ate it, it was on accident. I wasn't eating many processed foods and for the most part it had been that way for months. That was all from September. In November I went back and she said she would do some more indepth testing for it but I can't find it in the records. I found CBC w/differential, ANA w/reflex titer and ESR all for the november date. Would any of those be indicative of anything? Do I need to ask for the other tests or is this just considered a negative result? Is it worth trying another round of gluten-free and be really strict or should I just go for the biopsy? I mean, the docs want to scope me anyway so why not? Plus it rules out UC and Crohns. I have been doing gluten-free for the past 48 hours and I'm not as bloated but I also was so misrable Monday night from the bloat I downed a bottle of mag. citrate. So, I'm thinking it could be residual from that? I'm not sure. I definately had more energy today even though I got less sleep last night.

Any ideas? I know the biopsy vs. elimination diet is a personal choice but given the above results what would you do?


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



Celiac.com Sponsor (A8-M):



NateJ Contributor

That's a tough decision you will have to make. I ask myself everyday for the last 2 months. Is this the day I drive

to the ER and just sit there until they fix it?

I guess it just depends on how severe your symptoms are. If you think you can wait it out, try the diet and see if it helps at all. The worse thing that could happen is it doesn't work and then you know that its something else.

My problem so far is i'm only on day 6 and my symptoms have not gotten better yet. The only thing that has is i don't have urgency or 'D'. Other than that everything else is the same. It takes will power and dedication to stick to this. I'm learning that each day.

You will find an answer though, you just have to keep the faith that your body will tell you what it needs or doesn't need.

ravenwoodglass Mentor

If you are gluten free already you will have negative tests. You need to be on a diet that includes gluten in 'regular' levels, like at least 4 to 6 slices of bread a day for about 3 months before the tests have any chance of showing a positive. If you need a diagnosis then do the 3 month challenge and get retested. If the challenge makes you very ill you have your answer and be aware that even then you could have a false negative on testing.

Nate, if you have seen some relief from D you are having signs that the diet is working for you. It can take some time for a lot of the symptoms to resolve but if you have only been on the diet for 6 days and are already seeing a reduction in D then that is a good sign that things will continue to improve.

NateJ Contributor

Nate, if you have seen some relief from D you are having signs that the diet is working for you. It can take some time for a lot of the symptoms to resolve but if you have only been on the diet for 6 days and are already seeing a reduction in D then that is a good sign that things will continue to improve.

Thats the main reason I'm sticking to it. I think i can deal with the constant sharp pain in my stomach as the 'D' goes away. At least until I get the scopes done on the 30th. I'm just wanting to make sure its not an ulcer or whatever else would cause sharp pains there.

I have been reading some things about adhesions after surgery. But i don't a fever at all so I will just continue to wait this out. Supposed to start a new job on Monday. just hoping i can get through the days without to much pain.

ravenwoodglass Mentor

Thats the main reason I'm sticking to it. I think i can deal with the constant sharp pain in my stomach as the 'D' goes away. At least until I get the scopes done on the 30th. I'm just wanting to make sure its not an ulcer or whatever else would cause sharp pains there.

I have been reading some things about adhesions after surgery. But i don't a fever at all so I will just continue to wait this out. Supposed to start a new job on Monday. just hoping i can get through the days without to much pain.

Are you having the scopes for celiac diagnosis? I hate to have to say this but if you are you shouldn't be going gluten free yet. I find name brand Pepto Bismal liquid to work very well for stomach pain, you may want to try it if it is something you can take. Celiac can cause ulcers and stomach irritation so if you do have them they may resolve on the diet without the aid of script antiacids.

I have had extensive adhesions throughout my abdomen due to trauma and a PT was very helpful in dealing with them. I did at one point have surgery to free them up but if you do have them they often return after surgery.

missj Rookie

36 hours with no gluten (that I know of). I had cake this afternoon around 2:30 and by 5:00 my vision was blurry and my mind was fuzzy. At dinner I had a deep fried stuffed mushroom and a slice of bread, along with my salad. It's now 8:30 and I've been nauseas since 6:30? It was about halfway through dinner that I started to feel it.

Can other food intolorences cause this stuff? Maybe it's glucose? Because also for the past 36 hours I haven't had much refined sugar...actually I haven't had any, now that I think about it. I had 2 mini mounds bars, that cake, fruit and fruit dip.

The saga continues. Oi.

ravenwoodglass Mentor

36 hours with no gluten (that I know of). I had cake this afternoon around 2:30 and by 5:00 my vision was blurry and my mind was fuzzy. At dinner I had a deep fried stuffed mushroom and a slice of bread, along with my salad. It's now 8:30 and I've been nauseas since 6:30? It was about halfway through dinner that I started to feel it.

Can other food intolorences cause this stuff? Maybe it's glucose? Because also for the past 36 hours I haven't had much refined sugar...actually I haven't had any, now that I think about it. I had 2 mini mounds bars, that cake, fruit and fruit dip.

The saga continues. Oi.

Since you're wondering about the sugar issue keep up the gluten challenge but delete the high amounts of sugar. Personally I would think the reaction is likely from the gluten. Go with breads, stuff like triscuits, cream of wheat etc if you want to do gluten without all the sugar in cake and cookies.


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



Celiac.com Sponsor (A8-M):



NateJ Contributor

Are you having the scopes for celiac diagnosis? I hate to have to say this but if you are you shouldn't be going gluten free yet. I find name brand Pepto Bismal liquid to work very well for stomach pain, you may want to try it if it is something you can take. Celiac can cause ulcers and stomach irritation so if you do have them they may resolve on the diet without the aid of script antiacids.

I have had extensive adhesions throughout my abdomen due to trauma and a PT was very helpful in dealing with them. I did at one point have surgery to free them up but if you do have them they often return after surgery.

Its really to rule out everything. My GI is not certain what the cause of my pain and D are and neither am I. But after being sick for 10 years and then really really sick for the past two months my whole life is suffering.

Its like i stated earlier. If this diet works, I don't care what the test says. I'm staying off gluten.

If it doesn't work, then no harm done. I'm still having the scopes either way. I need to know what if anything structural is causing this pain.

If the tests come back negative for everything, then maybe some day in the future i will do the gluten challenge.

But i'm so sick right now i can't even think about trying anything else until they take a look.

I'm sorry but IBS or whatever other functional problem they keep telling me cannot cause my gut to be twisted into a knot for 2 straight months with no relief. And if it is IBS, its gotten worse over the last 6 months, which everyone I've ever spoken to says IBS never gets worse.

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,954
    • Most Online (within 30 mins)
      7,748

    Barb E
    Newest Member
    Barb E
    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

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.