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

Positive blood test and negative biopsy. Feeling confused!

Carmen30

Recommended Posts

Carmen30 Newbie
Carmen30
Posted

Hi everyone!

I'm feeling very frustrated. I have been dealing with GI upset, bloating, very painful gas(that is hard to release), alternating from constipation to diarrhea for a long time now:(... my symptoms seem to be getting worse. Sometimes I get painful spasms located on my upper right quadrant of my stomach and low grade fever. I recently went to a GI doctor and he put me on a lactose free diet. He said I might be lactose intolerant and may have IBS. He did not think I would have celiac. I did relatively well on the lactose free diet for 2weeks.This diet alleviated some of my gas discomfort. Also, he had me get blood work for celiac, ulcerative colitis and H pylori. My bloodwork was positive for celiac disease. The antibody TTG was high 36.6, which is specific for celiac. My C-reactive protein was high as well 13.4--Norm is 2-7(C-reactive protein checks for inflammation anywhere in the body). They called me and told me I had to get an upper endoscopy, which biopsy showed up normal. So should I just leave it like that, or go to a different doctor and get a different opinion? I'm just wondering why TTG antibody-A  was elevated. I'm so frustrated and I really don't want my symptoms to get worse... is there a lot of false negative biopsy? What should I do:(??? Should I just give up...

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did? 

Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas?

Were you eating gluten right up until the biopsy?

  • 1 month later...
Carmen30 Newbie
Carmen30
Posted
  • Author
On August 24, 2016 at 5:48 PM, squirmingitch said:

Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did? 

Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas?

Were you eating gluten right up until the biopsy?

Sorry for responding so late! Biopsy was negative and Doctor said he took 6-8samples from duodenum bulb. Here are my serology lab results: Gliadin (Deamidated) Antibody IgA 10.49Units(<=19.99), Gliadin (Deamidated) Antibody IgA Result Negative, **Tissue Transglutaminase Antibody IgA 36.12(Units<=19.99)-->Tissue Transglutaminase Antibody IgA Result Positive!  Celiac Disease Cascading Reflex IgA 246mg/dL (81 - 463 ), C-Reactive Protein (CRP) 13.4mg/L(<=7.9 checks for inflammation),  Erythrocyte Sedimentation Rate 11mm/hr(0 - 20). Also, he did another test on 9/6/16, which was LabPrometheus CELIAC GENETICS test. My result was positive/high risk. MY GI physician put me on a strict gluten free diet trial for 3months to see how my body reacts to that and hopefully helps my symptoms go away. He wants to make sure for sure I guess before he diagnoses me with Celiac disease. He did genetics test to rule out celiac disease and if it is positive then he said that damage must have been patchy.  I hate this whole process and it is starting to become very frustrating ugh!! My medical bills are ridiculous! I wish my blood test was negative for Celiac, so I don't have to deal with this:(... I just want a diagnoses and want to know  what is wrong with me. This whole diagnoses process is taking too long. I guess I'll find out in three months when he does serology test again. If my TTg IgA is negative then it is confirmed Celiac Disease. I guess I should be patient, but I just get frustrated because I know for a fact I have Celiac. All the signs/symptoms are there and proven serology & genetic test. I've been gluten free/diary free for 2weeks now and I already feel great. I don't even get bloated, constipated and very painful gas anymore. Also, I don't feel tired all the time. I feel more energized and happier ever since i started gluten free/diary free diet. I'm also lactose intolerant too, so yea.. sorry for the long essay here lol! I just needed to vent to someone that can relate. I'm just very frustrated with my GI Dr. because he is just taking too long to diagnose me. Well I hope to hear from you back and thanks for replying!

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you have a good doctor. Your body is already telling you that the diet is working and from what your doctor said he is going to give you the official diagnosis when your levels are down at your repeat blood test.

Stay strict with the diet, enjoy feeling better and I think you will have your official diagnosis soon.

ironictruth Proficient
ironictruth
Posted

Stay on the diet. Strictly. I had a high risk gene, mild positive test, and negative biopsy last winter. 

I went gluten-free anyway but did not watch out for cross contamination.

Now I have acute intestinal inflammation with pain/nausea, heart skips, thyroid swollen, adrenal gland calcified, neurological symptoms and a strong positive test last month. 

 

 

Palvyre Apprentice
Palvyre
Posted

I had a similar experience and I ended up having Celiac with severe malabsorption issues. I had a 20 year history of chronic diahrrea and acid reflux. It progressed to constant nausea, upper abdominal pain, balance issues, and foggy mind. My doctor put me through a ton of tests. My entire Celiac blood panel was positive. My ttg-IgA was 76.9 with normal being < 15. I was sent for a biopsy which came back negative. My doctor also sent me for a Prometheus labs genetic test. I was high risk as well. He put me on a 3 month trial gluten-free diet. At the end of which my symptoms had largely resolved and my repeat Celiac antibody panel was normal. I was able to eliminate the rest of my symptoms after also being diagnosed with lactose intolerance and fructose malabsorption. Follow up testing showed I have osteoporosis as well. So definitely continue the process with your doctor. I am now 3 years down this road and completely symptom free. Feel better than I have felt since my teenage years. 

Carmen30 Newbie
Carmen30
Posted
  • Author
7 hours ago, Palvyre said:

I had a similar experience and I ended up having Celiac with severe malabsorption issues. I had a 20 year history of chronic diahrrea and acid reflux. It progressed to constant nausea, upper abdominal pain, balance issues, and foggy mind. My doctor put me through a ton of tests. My entire Celiac blood panel was positive. My ttg-IgA was 76.9 with normal being < 15. I was sent for a biopsy which came back negative. My doctor also sent me for a Prometheus labs genetic test. I was high risk as well. He put me on a 3 month trial gluten-free diet. At the end of which my symptoms had largely resolved and my repeat Celiac antibody panel was normal. I was able to eliminate the rest of my symptoms after also being diagnosed with lactose intolerance and fructose malabsorption. Follow up testing showed I have osteoporosis as well. So definitely continue the process with your doctor. I am now 3 years down this road and completely symptom free. Feel better than I have felt since my teenage years. 

Wow that is crazy!  I'm so sorry you had to go through that:(... Yea it's been a big hassle for me,  but I won't give up because it is my health.  Also, my husband and I are trying to have a baby too. I want to make sure I am healthy because it would be scary to get pregnant and not figure out what is wrong with me. My priority would be my babies health, so yea I definitely will not give up on this.  I know I do have Celiac. All the signs are there and I've been feeling so much better ever since I started my gluten free/diary free diet. Thanks for responding and I hope you continue to feel great!  I'm glad they have Celiac awareness month in May too because this disease I noticed not a lot of people know about.  

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

Celiac.com Sponsor (A8-M):


Palvyre Apprentice
Palvyre
Posted
2 hours ago, Carmen30 said:

Wow that is crazy!  I'm so sorry you had to go through that:(... Yea it's been a big hassle for me,  but I won't give up because it is my health.  Also, my husband and I are trying to have a baby too. I want to make sure I am healthy because it would be scary to get pregnant and not figure out what is wrong with me. My priority would be my babies health, so yea I definitely will not give up on this.  I know I do have Celiac. All the signs are there and I've been feeling so much better ever since I started my gluten free/diary free diet. Thanks for responding and I hope you continue to feel great!  I'm glad they have Celiac awareness month in May too because this disease I noticed not a lot of people know about.  

I was a little bitter, felt like I lost out on my 20's. I am all good now though. My daughter started having issues and so we had her tested. Turns out she has it as well and she was 7 at the time of her diagnosis. We are a year past that and she is fully recovered as well and healthy. I am kind of sad that I passed this on to her, but because of her early diagnosis, she won't have all the other issues I have. So I am grateful for that. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,536
    • Most Online (within 30 mins)
      7,748
    Flibertygibbet
    Newest Member
    Flibertygibbet
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • 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.