Positive blood test and negative biopsy. Feeling confused!

[Carmen30]

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...

[squirmingitch]

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?

[Carmen30]

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]

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]

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]

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]

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.  

[Palvyre]

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.