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
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • 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.  
×
×
  • 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.