Jump to content
  • 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):

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
×
×
  • Create New...