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

Blood Work Negative, Confused


camsmom

Recommended Posts

camsmom Newbie

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,017
    • Most Online (within 30 mins)
      7,748

    Sjcucinotta
    Newest Member
    Sjcucinotta
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.