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

Blood Work Negative, Confused

camsmom

Recommended Posts

camsmom Newbie
camsmom
Posted

Hi There

I am new to this sight. I will give a brief history and then tell you what I have found out thus far. I started having chronic diahhrea in July after my appendix were removed. I thought it had to do with the surgery. Well, then I started having horrific pain under right rib cage. Turned out my gallbladder got infected from appendix coming out and had to be removed. No I am of normal weight. 5'5, 120. The diahrrea has never stopped since July. They thought I had dif c, did stoll culture treated me several times, nothing worked. Had a few ct scans back in September, showed nothing. Went and saw the GI doc in December, but due to hectic work scheduled, yes my fault. I travel and work in outside sales! Never got back in and did not follow up. Well, things have gotten much worse. Wait, take that back. I did get my colonoscopy done end of december, it was negative. The doc that did it said i had so much scar tissue that next time they will have to knock me out completely! History, 4 abdominal surgeries in the past year (appendix removed, gallbladder, large ovarian cyst, ruptured ectopic pg). O.k. there it goes. I am a very healthy 37 year old female. I never had diahhrea before this. i was always the later, constipated! So, just had my blood work done, see the doc in two weeks. The blood works says this

endomysial antibody iga - negative

ttg-iga 1 so that is negative

immunoglobulin a,qn serum low, 35 normal level 70-400

ttg-igg 0

so, stool samples were turned in today. Should i be pushing for a scope when i see the doc? is the immunoglobun a serum the iga? and is this the test that can scew the blood tests in the wrong way because I am so low?

Thanks for your answers and I would love to hear what everyone else's stories are. not sure if it is celiac or not, but so far nothing else!!!!! It is not chrons, colitis, ibs, or any other thing so so far I am a mystery! I am in pretty bad stomach pain and this is really embarassing! My stomach makes horrific noises even when I don't need to go!!! I need to be normal again! And, no it is not bile salt diahhrea, i tried the medicine for that as well.

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted

Welcome to the board :)

I found your post interesting because it sounds like my story.

All of my troubles started after I had my last hernia surgery 2 years ago - I had 7 inguinal hernia surgeries total in a period of 3 years, and after the last one I was never the same. I was constipated like nobody's business (I would feel the urge to go, but nothing would happen, sorry if TMI), I was nauseous after eating, my stomach made weird noises all the time, I had bad bad cramps after I'd eat (think bad menstrual cramps), I lost 6 pounds and so on. They tested me for various things, but my GI refused to scope me because I had "already been through so much", and wrote me a prescription for IBS and sent me home.

My MD thought it might be Celiac's, like you I also had negative bloodwork (they only tested the ttG tough, I didn't know that wasn't enough at the time)

But since July 2008 I went gluten free, and all of my problems disappeared. My MD semi-diagnosed me with Celiac's because I have a family history and because of my incredible dietary response.

I'm not the best person to ask on the blood test stuff but I know you have to get a Total Serum IgA to see if you're IgA deficient, and in the case that you are your bloodwork would be false. If you're convinced that its Celiac I would absolutely push for an endoscopy if you could, it could be beneficial in that they could also see if anything else is wrong while they're in there.

It's too late for me now, being gluten-free for so long, but I don't need a biopsy to tell me that gluten was what was making me sick. I pulled a complete 180 since stopping and I'm never looking back.

I hope you feel better soon! Good luck :)

camsmom Newbie
camsmom
Posted
  • Author
Welcome to the board :)

I found your post interesting because it sounds like my story.

All of my troubles started after I had my last hernia surgery 2 years ago - I had 7 inguinal hernia surgeries total in a period of 3 years, and after the last one I was never the same. I was constipated like nobody's business (I would feel the urge to go, but nothing would happen, sorry if TMI), I was nauseous after eating, my stomach made weird noises all the time, I had bad bad cramps after I'd eat (think bad menstrual cramps), I lost 6 pounds and so on. They tested me for various things, but my GI refused to scope me because I had "already been through so much", and wrote me a prescription for IBS and sent me home.

My MD thought it might be Celiac's, like you I also had negative bloodwork (they only tested the ttG tough, I didn't know that wasn't enough at the time)

But since July 2008 I went gluten free, and all of my problems disappeared. My MD semi-diagnosed me with Celiac's because I have a family history and because of my incredible dietary response.

I'm not the best person to ask on the blood test stuff but I know you have to get a Total Serum IgA to see if you're IgA deficient, and in the case that you are your bloodwork would be false. If you're convinced that its Celiac I would absolutely push for an endoscopy if you could, it could be beneficial in that they could also see if anything else is wrong while they're in there.

It's too late for me now, being gluten-free for so long, but I don't need a biopsy to tell me that gluten was what was making me sick. I pulled a complete 180 since stopping and I'm never looking back.

I hope you feel better soon! Good luck :)

Thanks for your reply. I think I did have the total serum iga which is the iga serum test and mine is low at 35 which means from my research that my blood tests can come back negative. My doc is out of town this week, then I travel next week so I don't see her until next friday. She will have my stool cultures by then and i guess we will take it from there! If they show some parasite, or if she thinks it is celiac. I know I am not suppose to try gluten free until they do an endoscope so I am just staying put for now!!!!!

Archived

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

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


  • Member Statistics

    • Total Members
      128,100
    • Most Online (within 30 mins)
      7,748
    HCK
    Newest Member
    HCK
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Vaccines

      By trents · Posted

      But isn't it easier to just take a D3 supplement? Is the D light somehow a superior source? Links?
    • Scott Adams
      Status Update...

      By Scott Adams · Posted

      So the way it should be used is to take it before possible gluten exposure, so right before a meal at a restaurant take 1-2 capsules. Unfortunately taking it 1 hour or more after an exposure is too late.
    • Scott Adams
      Do I really need to get a biopsy?

      By Scott Adams · Posted

      Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • trents
      Do I really need to get a biopsy?

      By trents · Posted

      Welcome to the forum, @Ryangf! If you don't have celiac disease you could still have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS does not damage the lining of the small bowel as does celiac disease. Some experts feel NCGS can be a precursor to the development of celiac disease. NCGS is 10x more common than celiac disease. There is no test for it. A diagnosis of NCGS is arrived at by first ruling out celiac disease by formal testing. At the end of the day the antidote for both is the same, namely, life-long abstinence from gluten. Yes, corn is a common cross-reactor with gluten for some celiacs. So are oats, soy, eggs and dairy.  I have concern with your possible exposure to wheat flour dust during your culinary training. It gets in the air, you breathe it in, it gets trapped in the mucous of your mouth and airway and winds up in your gut. If you decide to go forward wit the "gluten challenge" for formal celiac disease testing, aim for the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for four weeks leading up to the day of either the blood draw or the endoscopy/biopsy.
    • Scott Adams
      Less than 10 parts per billion issues

      By Scott Adams · Posted

      I just want to mention that with gluten we're talking about ppm, or "parts per million," and not parts per billion.  Sticking to whole foods and home cooking is the safest way to go, without necessarily replacing all gluten products you might normally eat with gluten-free ones. If you do eat gluten replacements, for example gluten-free bagels or breads, it's probably best to take @trents advice and seek out certified gluten-free brands.
×
×
  • Create New...