Can I have + antibodies,+gene and negative biopsy?

[Jeanine5876]

Hi, any thoughts are appreciated. 

IgA- my Value 281 mg/dL.                        Standard Range87 - 352 mg/dl

Deamidated Gliadin Abs, IgA- my Value 8 units.                                                          Standard Range0 - 19 units

Deamidated Gliadin Abs, IgG- my Value 9 units.                                                        Standard Range0 - 19 units

TTG IgA- my Value<2 U/mL                   
Standard Range0 - 3 U/mL                         

Tissue Transglut Ab- my Value13 U/mL. Standard Range0 - 5 U/mL

DQ2 (DQA1 0501/0505,DQB1 02XX)- My Value.    Positive

DQ8 (DQA1 03XX, DQB1 0302)My Value.   Negative

terrible abdominal pain for years-diarrhea, constipation in the same day. Bloating, gas. Excessive fatigue. No weight loss, no rashes. 
diagnosed about 3 months ago with a undifferentiated connective tissue disorder(either Rheumatoid, Lupus or Sjogrens). Exact diagnosis stated by DR. was Seronegative Rheumatoid arthritis but that’s not what my chart said. 
 

Had biopsy about an hour ago and Dr. Said there were no clear visible indication of Celiac. He did take biopsy’s for celiac and H pylori( blood work came back negative for this). 
 

Question- Could I have + for gene and tissue transglut A and biopsy come back negative for Celiac? I was to groggy to ask Dr. After the endoscopy. 
Hoping someone here may know the answer.

thanks for any help,

Jeanine

P.s. in addition I began cutting out gluten for 4 days before biopsy not knowing that I should not have done that. I consumed an excessive amount yesterday when I was told to eat it. Sick all day,  but not sure if this would make any difference since it was only 4 days of attempting to eliminate while learning what Gluten is. 
 

 

 

 

[Russ H]

38 minutes ago, Jeanine5876 said:

TTG IgA- my Value<2 U/mL                   

Standard Range0 - 3 U/mL                         

Tissue Transglut Ab- my Value13 U/mL. Standard Range0 - 5 U/mL

Hello

TTG is an abbreviation for tissue transglutaminase. You show 2 test results for this, 1 negative and 1 positive. Was one for IgA and the other for IgG?

[trents]

I would wait on the biopsy pathology report from the lab before drawing any conclusions. A small amount of damage or a biopsy taken in the case where the onset of celiac disease was recent will not show during the scoping itself. It would need microscopic analysis. Also, many docs doing the scoping may only take one biopsy sample. If the damage is patchy, they easily can miss it. Ideally, several samples should be taken from the duodenum and the duodenum bulb. Isn't it wonderful to learn all these nuances after the procedure is done - things you could have asked the doc about had you known about them!

Edited April 13, 2023 by trents

[Jeanine5876]

51 minutes ago, Russ H said:

Hello

TTG is an abbreviation for tissue transglutaminase. You show 2 test results for this, 1 negative and 1 positive. Was one for IgA and the other for IgG?

Hi, thanks for responding. I just reviewed the bloodwork from LabCorp and it shows the positive is the IgG and the negative was the IGA

t-Transglutaminase (tTG) IgG 13 high

Negative  0-5 
Weak Positive 6-9 
Positive >9
U/mL

t-Transglutaminase (tTG) IgA  <2

Negative 0-3
Weak Positive 4-10
Positive >10
U/mL

Hope this is what you mean. 

 

 

[Jeanine5876]

30 minutes ago, trents said:

I would wait on the biopsy pathology report from the lab before drawing any conclusions. A small amount of damage or a biopsy taken in the case where the onset of celiac disease was recent will not show during the scoping itself. It would need microscopic analysis. Also, many docs doing the scoping may only take one biopsy sample. If the damage is patchy, they easily can miss it. Ideally, several samples should be taken from the duodenum and the duodenum bulb. Isn't it wonderful to learn all these nuances after the procedure is done - things you could have asked the doc about had you known about them!

Good afternoon, 

thanks for your reply. Yes I should have known to ask some of these questions as I have been googling for days now. 
this is what was written In my chart hopefully it means he took enough biopsy’s to diagnose one way or the other. The symptoms I have need to be answered so how. 
 

The mucosa of the esophagus appeared normal

2. The diaphragmatic impression, end of the gastric folds and z-line 40 cm from incisors

3. There was mild antral gastropathy noted; Random gastric biopsies were obtained to rule out H. Pylori

4. The duodenal mucosa showed no abnormalities; Duodenal biopsies were taken to rule out celiac sprue

5. Retroflexed views revealed no abnormalities.

thanks again for taking the time to respond! 

[Russ H]

1 hour ago, Jeanine5876 said:

Good afternoon, 

thanks for your reply. Yes I should have known to ask some of these questions as I have been googling for days now.

High levels of antibodies to tTG2 (10x standard range or greater) are very likely to indicate coeliac disease. More modest levels as shown in your positive result can be caused by coeliac disease but also other conditions such as inflammatory bowel disease or arthritis.

[Paul Hanna]

It is hard to interpret your biopsy result given the lack of gluten ingestion in the days preceding the biopsy. It is only 4 days but it still might affect the result. Of interest, the anti-TTG serology can be positive in inflammatory conditions including RA. The gene test does not help with the diagnosis in this case - having HLA-DQ8 or DQ2 is considered necessary but not sufficient for diagnosis. 

You may need to repeat the biopsy on gluten (for at least 6 weeks). You could also try a gluten free diet as a trial (just to see if it makes a difference). Whatever the case, liaise with your gastroenterologist. 

[Wheatwacked]

On 4/13/2023 at 11:45 AM, Jeanine5876 said:

I consumed an excessive amount yesterday when I was told to eat it. Sick all day,

Did you feel better on those days you did not eat gluten?  You have a gene, you have one positive antibody test and you responded well to gluten free diet.  Is your goal to be diagnosed or to feel better? 

A medical diagnosis of Celiac Disease still requires a biopsy with Marsh 3 damage to the small intestine villi.  Officially, except for DH they don't acknowledge the other 200 symptoms as Celiac caused. 

Lucky for you there is not much damage, so if you stop gluten now you may have good recovery speedy recovery. 

On 4/13/2023 at 11:45 AM, Jeanine5876 said:

terrible abdominal pain for years-diarrhea, constipation in the same day. Bloating, gas. Excessive fatigue. No weight loss, no rashes. 
diagnosed about 3 months ago with a undifferentiated connective tissue disorder(either Rheumatoid, Lupus or Sjogrens). Exact diagnosis stated by DR. was Seronegative Rheumatoid arthritis but that’s not what my chart said. 

These are all classic misdiagnosed ailments caused by gluten.  The clue is when you ask the doctor what causes them the answer is something like " Well, we don't exactly know, but we Know the symptoms and can treat it with medications or surgery".  What are the odds of you having seven different diseases at the same time causing all of your different symptoms.  Start healing with gluten free and later deal with whatever doesn't show improvement in a reasonable time.  Much safer approach.  I had 19 symptoms that I grew up with and thought it was just normal. Chronically stuffed nose, enlarged prostate ( at 21 years old?!), terrible post nasal drip that would choke me at night when I was 12, arthritis pains that were never in the same place, underweight, potein buildup on contact lenses, fatigue.  Later if I did not move my head I would have to use my hands to move it. Only prednisone helped that until I started GFD. Depression for years and so on.  My son was diagnosed as an infant, yet I was in denial until I was 63 and in bad shape. Coulda, Shoulda.  If it looks like a duck... but the doctor says it is not a duck.  Keep eating gluten, eventually you may get sick enough for a "correct diagnosis".  Average time to diagnosis from first symptoms seems to be around 10 years on average.

There is a diagnosis of Non Celiac Gluten Sensitivity which is diagnosed by ruling out Celiac and showing improvement on gluten free diet.  Bottom line, wheat, barley and rye are not good for you and avoiding them you may find all of your symptoms, including some you think is normal, may magically improve.

According to American Family Physcian: "Many patients initiate a gluten-free diet on their own before a conclusive diagnosis of celiac disease is reached. In severe celiac disease, the effect on serologies and biopsy findings is likely minimal if testing is performed within two months of initiating a gluten-free diet.  .. However, it appears that the autoimmune process itself is responsible for at least some of these extraintestinal manifestations. The clinical presentations strongly associated with celiac disease (i.e., at least 10% of patients in these groups have celiac disease) include chronic gastrointestinal symptoms with a family history of celiac disease or a personal history of autoimmune disease "