New testing shows positve, previous tests were negative

[Debbie Blank]

I was recently refered to a gastroenterologist because of Severe Iron Deficiency Anemia, which has required me to have multiple iron infussion treatments (every 4-6 months) for the last two years. Even though I had been tested about 4 years ago for Celiac's (which were negative) he thought it should be checked again, before moving forward with other possiblities for the anemia.  The lab work came back today as being positive.  The TTG/Iga was 63.9 and flagged as High.  He said to keep eating normally until January when they can get me in for a biopsy.  Is it possible the biopsy could come back normal and I could still have Celiac's?  I'm not wanting to have it, but I hate having to get iron infussions every 4-6 months for the rest of my life.  My worst symptom about anemia is the severe fatigue.  The reason I had been tested previously (4 years ago) is that my daughter (age 39) had been recently diagnosed with Celiac's and becuase I was diagnosed 9 yrs ago with Rheumatoid Arthritis, which is an autoimmune disease they thought there was a good possiblity I might have it.  But because it came back negative back them we all just attributed the fatigue to the RA, which is common side effect as well.  

Any thoughts?

[trents]

Welcome to forum, Debbie!

It would be helpful if you would include the reference range for the tTG_IGA value you posted. Each lab uses it's own reference range for negative vs. positive. There is no industry standard. You state the value is positive but with out the reference range we cannot tell for sure whether or not it is a strong positive.

In either testing period, were other celiac antibody tests ordered besides the tTG_IGA? That is only one of several celiac antibody tests that can be run. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Yes, it is possible for the antibody test to be positive but the biopsy to be negative. But that is rare. The tTG-IGA is pretty specific for celiac disease.

One thing that can generate a false negative for the tTG_IGA test is low total IGA. Was total IGA checked either time you were tested? Another thing that can cause false negatives in celiac antibody testing is when people commence the gluten free diet before being tested. By the way, your doctor is correct in advising you to keep eating gluten until after the biopsy is done.

Finally, besides anemia and fatigue, have you been experiencing other symptoms that are associated with celiac disease?

Edited December 16, 2022 by trents

[Debbie Blank]

3 minutes ago, trents said:

Welcome to forum, Debbie!

It would be helpful if you would include the reference range for the tTG_IGA value you posted. Each lab uses it's own reference range for negative vs. positive. There is no industry standard. You state the value is positive but with out the reference range we cannot tell for sure whether or not it is a strong positive.

In either testing period, were other celiac antibody tests ordered besides the tTG_IGA? That is only one of several celiac antibody tests that can be run. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Yes, it is possible for the antibody test to be positive but the biopsy to be negative. But that is rare. The tTG-IGA is pretty specific for celiac disease.

One thing that can generate a false negative for the tTG_IGA test is low total IGA. Was total IGA checked either time you were tested? Another thing that can cause false negatives in celiac antibody testing is when people commence the gluten free diet before being tested. By the way, your doctor is correct in advising you to keep eating gluten until after the biopsy is done.

Finally, besides anemia and fatigue, have you been experiencing other symptoms that are associated with celiac disease?

Hi Trents-  Thank you for the reply.  Since I was in my 20's (I'm now 63) I have always gone from constipation to diarrhea. But doctors always said I just had irritable bowels, probably from stress, so I have always assumed thats what it was. I have never suffered from extreme gas or bloating. Of course after my daugter was diagnosed with Celiac's it really made me think about being misdianosed all those years ago, but again my first Celiac's test was negative, so I pushed those thoughts away again. 

My lab results read:

TTG Ab, IgA   Negative <15.0 U/ml    Positive > or=15.0   My value was 63.9

Gliadin DGP Ab IgA  Negative <15.0 U/ml    Positive> or=15.0  My value was 8.0

Iga  standard range  87-474 mg/dl    Your value 192

I new to all of these testing acryonyms, so I not sure what they all mean, but due to all of the great information on this site I am starting to piece it together little by little.  So thanks for all the information you guys have on here, it's so very helpful! 

[trents]

Alternating between diarrhea and constipation is a classic celiac symptom.

Your tTG-IGA is strongly positive.

Have you had any genetic testing done for celiac genes? About 40% of the population has one or both of the genes that are associated with celiac disease but only about 1% of the population develop active celiac disease. In addition to having the genetic potential for developing celiac disease, there must be a triggering stress event of some kind before the potential becomes active celiac disease. However, almost half of those with the genetic potential who have a first degree relative (sibling, parent, offspring) will have or will develop the disease and half of these will be largely asymptomatic ("silent" celiacs). I ask if you have ever had genetic testing done since your daughter could have inherited the genetic potential from her father. Another take away from these factoids is that your daughter's first degree relatives should be tested even if they are asymptomatic. Many celiacs are asymptomatic or largely so until damage to the small bowel villi becomes severe. That can take years.

[trents]

I realize I left out a necessary sentence element in order for my last post to make sense. I meant to type: "However, almost half of those with the genetic potential who have a first degree relative (sibling, parent, offspring) with active celiac disease will have or will develop the disease and half of these will be largely asymptomatic ("silent" celiacs)."

[Debbie Blank]

Thank you for looking at the results and your opinion on them.  I thought that's what it was indicating, that is was rather strong results.  As for genetic testing, no neither me or my daughter have done that yet.  But I will asking my doctor about in January when I see him again.  I would be a great piece of information to have so that I can pass it on to my son and my grandchildren for future knowledge.  Again thank you for you help it much appreciated.  Looks like I will be spending that next few weeks enjoying the last few tortellini's, ravioli and russian rye bread i have stashed in the freezer while I still can.   

[trents]

Keep us posted.

[Debbie Blank]

Just a quick update.  I did my endoscopy last week and the biopsy results confirmed that I do indeed have Celiac's.  I wasn't happy but at least it is an answer as to why I am so anemic.  Now that I know, I guess I will be doing some serious reading on this site.  I am in my 60's and I hope changing to a gluten free lifestyle won't be an extremely difficult challenge for me.  Thanks again for all the great content you guys provide on this site, I would be completely lost without it. 🙂

[trents]

Debbie, unfortunately, achieving a consistently gluten free state is more challenging than most ever realize at the outset. Most people have no idea how pervasive gluten is in the food supply. Would you ever expect gluten to be in soy sauce, tomato soup or chocolate syrup products? Pill and vitamin supplements? And would you ever expect that the naturally gluten free foods you order at fast food places or restaurants very well is cross-contaminated with gluten because of being cooked on the same surfaces or handled wit the same utensils?

Perhaps this will help you get off to a good start: