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

1 Week Left Till Endoscopy And Colonoscopy!

Mommabearof3

Recommended Posts

Mommabearof3 Rookie
Mommabearof3
Posted

I can't wait till testing is over. My bloods came back negative, but it turns out they didn't run a full panel so the scope is my last chance for a diagnosis at this point. I don't care even if it comes back negative, the first thing I'm doing is cutting a lot of crap, including gluten, from my diet to try to improve my stomach.

I'm in so much pain today because I'm stopped up, after months of D. I haven't taken anything or changed my diet, so no clue why this is happening now :-(

Liz

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

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

I can't believe they didn't run a full panel...How frustrating! Are you thinking about having the do the rest of the bloodwork? You are doing so great hanging in there with all of this waiting. Please let us know how the biopsy goes.

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

It is frustrating. I thought I was waiting for more results to load to my online account, because they were were also suposed to run a free T4 which they apparently didn't.

They only ran three celiac tests (the two deaminated iga and igg ones andthe tissue trans...whatever that long word is...iga) and a total iga. IGA came back at 332, with the range being 66 to 344. So I'm not IGA deficient, but they didn't test total IGG.

I don't even know if I should push for additonal testing or what. I looked at the lab guidelines on tests and they do not offer any other celiac tests but these three. I don't know if it's worth seeking out another doctor or just get the endo done and do the diet anyway.

I don't "need" a diagnosis. As an example, I have a pretty severe gastrointestinal reaction to straight up eggs. Worse then my regular reaction to things I eat. I figured it out on my own, and when asked at doctor appointments or past hospital stays, no one has ever questioned me on it. They just mark my chart as "egg allergy" and we move on. Only one nurse ever asked me what happens when I eat them, I told her about the 4 plus hours I will be in the bathroom and she just said, yeah I'd stay away from them too.

Liz

SMRI Collaborator
SMRI
Posted

The total IgG is less important than the total IgA.  If your TTIgA/IgG's came back negative with a normal IgA, that information is about as accurate as you can get.  Now, if you have symptoms of low IgG, that might be a test to ask for.  Are you sick all the time with colds, pneumonia, bronchitis, severe sinus infections, etc. that need 3 or 4 rounds of antibiotics to clear?  The GI stuff could be low IgG subclass 3 but that portion of the overall IgG is so small that it won't alter the overall IgG level.  I'm assuming they have done food allergy testing?

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

Thanks for that info. I have multiple sinus infections, ear infections, severe bronchitis requiring antibiotics, steroids and nebulizer treatments throughout the year. I saw an ent a month ago because I've had multiple ear infections in the last 2 to 3 years after 25 years of none and he said it was caused by allergies but did not offer any testing, just gave me allergy medicine.

I've always had odd occurrences of illness, 2nd grade I had strep throat 8 times in the school year, I'd get better and 5 days later I would have it again.

I also had mono when I was 14 and that completely killed my entire system for years.

Liz

SMRI Collaborator
SMRI
Posted

Thanks for that info. I have multiple sinus infections, ear infections, severe bronchitis requiring antibiotics, steroids and nebulizer treatments throughout the year. I saw an ent a month ago because I've had multiple ear infections in the last 2 to 3 years after 25 years of none and he said it was caused by allergies but did not offer any testing, just gave me allergy medicine.

I've always had odd occurrences of illness, 2nd grade I had strep throat 8 times in the school year, I'd get better and 5 days later I would have it again.

I also had mono when I was 14 and that completely killed my entire system for years.

Liz

 

I would make an appointment with an infectious disease doctor.  Given your Celiac testing came back negative, it's possible with your symptoms that you issues are immune related and not Celiac.  They should test your full IgG as well as the 4 subclasses.  I'm assuming you are old enough to remember the movie "Boy in the Plastic Bubble"  that is the same condition as the immune deficiency, an extreme case of it. With the upper respiratory symptoms, you are probably low IgG subclass 2 and the GI stuff is possibly low subclass 3.  Your overall IgG levels could be, and probably are, "normal" but since subclass 1 is the biggest, you need the subclasses tested as well.  If you were subclass 1 deficient, you would be in the hospital for a couple weeks with most of those above illnesses needing IV antibiotics.  I don't know where you are located but I'll suggest again going to Mayo for a complete work up vs having a test here, a test there and getting to the bottom of your symptoms.

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

I would make an appointment with an infectious disease doctor. Given your Celiac testing came back negative, it's possible with your symptoms that you issues are immune related and not Celiac. They should test your full IgG as well as the 4 subclasses. I'm assuming you are old enough to remember the movie "Boy in the Plastic Bubble" that is the same condition as the immune deficiency, an extreme case of it. With the upper respiratory symptoms, you are probably low IgG subclass 2 and the GI stuff is possibly low subclass 3. Your overall IgG levels could be, and probably are, "normal" but since subclass 1 is the biggest, you need the subclasses tested as well. If you were subclass 1 deficient, you would be in the hospital for a couple weeks with most of those above illnesses needing IV antibiotics. I don't know where you are located but I'll suggest again going to Mayo for a complete work up vs having a test here, a test there and getting to the bottom of your symptoms.

Thanks for the info, it looks like I have some stuff to look up so I can understand igg and the immune system more. Yes, I remember the boy in the plastic bubble and I've often joked that I needed to be in one because I catch almost everything. I even had the chicken pox twice because the first time I didn't build up enough of an immunity to it.

I can't afford a trip to the mayo clinic unfortunately. I'LL hopefully know more after my testing Monday and I'm planning on still doing an elimination diet after testing in order to pinpoint what is bothering me.

Liz

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      129,887
    • Most Online (within 30 mins)
      7,748
    BradL
    Newest Member
    BradL
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Virus, celiac disease or both?

      By trents · Posted

      First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity).  Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to  the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start. Sure, we get it. Having  to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten.  My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.”  It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play.  I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions. I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised.  The questions I still have lingering are:  -what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me.  - what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?)  - even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it?  -could I really possibly follow a gluten free life as close as I follow Jesus?  Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles.  I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard.  I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to.  I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics.  My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now.  I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏            
    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      Probably celiac but also confused

      By trents · Posted

      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
×
×
  • Create New...