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Hopelessly confused

Positive antibody a year ago now negative 34 weeks pregnant

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I saw my primary Dr a year ago about some GI symptoms I was having. He did a celiac panel on me. I called his office for the results but never received them and he's the type of Dr that says no news is good news so I went about my life figuring the test was negative. I had to go see him for something unrelated last week and he asked if I was following a gluten free diet, confused I said no. This is when he tells me I tested positive for the antibody last year. Something he neglected to inform me or get in contact to set up further testing. His response to the whole situation was don't worry I'll just test you again while you're here. I'm not sure what that was supposed to accomplish maybe just to get me to stop berating him. He tested me again and this time the antibody came back negative. The only difference is I'm currently 34 weeks pregnant. I started gluten free once he told me the first test was positive and will pursue additional testing after I have the baby with a different Dr. My question is could a positive test suddenly become a negative test I was eating gluten before both test or could the pregnancy have affected the results somehow? 

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It was totally irresponsible of your doctor not to share your positive celiac disease tests with you last year, and certainly this is even more concerning because you're now pregnant, and having celiac disease and continuing to eat gluten could lead to nutrient deficiencies, something that is critical during pregnancy. Here are some articles we've done on this topic:
https://www.celiac.com/search/?&q=pregnancy&type=cms_records2&search_and_or=and&search_in=titles

If you have copies of those test results it would be great if you could share them here, including the new results.

Pregnancy can certainly cause many metabolic changes and potentially make it harder to detect celiac disease. I will assume that you were eating gluten daily when the recent tests were done, and if not, this could explain the sudden negative results.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Wow!  I would report this doctor to the medical board.  Not informing you of your tests results is inexcusable.  Not to follow up a few months later to see how you are faring is also inexcusable (not to mention that you should have been referred to a Gastroenterologist).  
 

Please post your test results and lab ranges.  In the meantime, a gluten-free diet might be the most prudent thing for now and even later, if you plan on breastfeeding.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Wow, again!  
 

You were strongly positive a year ago.  I personally never had a positive on the TTG or EMA even in repeated tests over the years.  Just a positive DGP IgA (am also biopsy-confirmed).  
 

So, you have been eating gluten daily since that first celiac panel?  I am stumped.  Are you sure these lab results were actually yours?   
 

I am sure you are stressed about your baby.  Know that many members, including me, safely delivered children before we were officially diagnosed with celiac disease (most of us were ill for years or decades).  
 

I hope others can provide some input.  

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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They're both mine I requested the records from the lab after talking to my Dr since I didn't trust him to give me the new results. I am going to continue on a gluten free diet til after birth and while breastfeeding. I know this will delay a diagnosis but I feel it's best for myself and the baby. I am worried about the baby but all her growth scans are right on point and my OB says everything looks good so I'm holding on to that and hoping no real damage was done. 

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Your plan sounds good.  This is your chance to consume plenty of meats,  eggs, veggies, fruits, rice, nuts, etc.  Choose nutritionally dense foods.  Of course, indulge  in some gluten-free goodies to keep you sane.  But I think the good news is that baby gets the best at the expense of mother! 
 

Any symptoms?  I just had life-long anemia.  My hemoglobin was always just below range, but I have a genetic anemia.  Had some low ferritin results over the years,  but that was blamed on menstruation!  Ugh!  It was really celiac disease that was the cause of my iron-deficiency anemia and not Thalassemia (which I still have, but my body has adapted).   You might notice little things improve while on the diet.  
 

First baby?  This is off topic, but breastfeeding was my favorite new mom memory.   So easy.  My daughter thrived.  
 

I am happy for you.  Oh, I just became a great Aunt again.  My niece and nephew has a great experience delivering their baby girl.  All during these crazy times of COVID-19.  Thank goodness for social media!  It keeps us connected.  Someday, I will get to held her for real!  
 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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What your physician is saying is incorrect. Unfortunately, there is a lot of misinformation amongst physicians as well (excluding GI docs and those well educated in celiac disease). Note: I am a physician, biopsy-positive celiac, and have a degree in immunology.

Summary: do not eat gluten.

Explanation: I'm going to assume this was your anti-transglutaminase result. This is an antibody test, and it will fluctuate over time. If you have had a positive serotologic test (i.e. number greater than 7...particularly if it's greater than 10), you have celiac disease. In very simplified terms, B cells produce these antibodies, and will continue producing antibodies when you consume gluten. If you stop eating gluten, the B cells will stop producing as many antibodies....but the B cells are still there and remember their target. So, if you're completely off gluten, your antibody test will appear falsely normal, but, again, your immune system is ready and waiting to attack your gut cells again at the next gluten insult. 

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On 7/14/2020 at 11:51 AM, Hopelessly confused said:

My question is could a positive test suddenly become a negative test I was eating gluten before both test or could the pregnancy have affected the results somehow?

4 hours ago, Dr. A said:

What your physician is saying is incorrect. Unfortunately, there is a lot of misinformation amongst physicians as well (excluding GI docs and those well educated in celiac disease). Note: I am a physician, biopsy-positive celiac, and have a degree in immunology.

Summary: do not eat gluten.

Explanation: I'm going to assume this was your anti-transglutaminase result. This is an antibody test, and it will fluctuate over time. If you have had a positive serotologic test (i.e. number greater than 7...particularly if it's greater than 10), you have celiac disease. In very simplified terms, B cells produce these antibodies, and will continue producing antibodies when you consume gluten. If you stop eating gluten, the B cells will stop producing as many antibodies....but the B cells are still there and remember their target. So, if you're completely off gluten, your antibody test will appear falsely normal, but, again, your immune system is ready and waiting to attack your gut cells again at the next gluten insult. 

Dr. A et Al,

Hopelessly Confused question was why the 2nd test was negative despite eating gluten.

And why Cylinglady said "Wow" ....don't know...and "Wow Again"....

It is puzzling to think back and investigate it a little...

The University of Chicago FAQ tells some Virus' can trigger a False Positive...

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

 Notable Giardiasis but it might even bee other Reoviruses as well....

This newer research from Circa 2017 explains why this is...

https://www.gutmicrobiotaforhealth.com/virus-may-lead-celiac-disease-disruption-intestinal-immune-homeostasis/

This (Virus like Giardisis) could of triggered a False Positive...

We see a similar connection in Epstein Barr Virus...

See this thread where this association is discussed.

Or just this link ....if you don't have time to read the Strep thread...

https://medicalxpress.com/news/2018-04-epstein-barr-virus-linked-diseases.html

It might be no different than a False Positive for Hepatitis due to a Viral infection....

I have had his happen to me... failed a Hep test.... only to pass it latter due to a viral infection.

This seem a little controversial but it is not the first time it has come up in the literature/been studied...

It is just not well  understood yet?

There was a nice Swedish study about this 4 or 5 years ago that essentially concluded the same thing...entitled "Lifestyle a risk factor for Celiac disease" IE something in our Environment can trigger our Genes to attack us....where before they did not......

https://www.sciencedaily.com/releases/2015/11/151102100302.htm

I hope this is helpful but it is not medical advise.

Posterboy,

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5 hours ago, Dr. A said:

What your physician is saying is incorrect. Unfortunately, there is a lot of misinformation amongst physicians as well (excluding GI docs and those well educated in celiac disease). Note: I am a physician, biopsy-positive celiac, and have a degree in immunology.

Summary: do not eat gluten.

Explanation: I'm going to assume this was your anti-transglutaminase result. This is an antibody test, and it will fluctuate over time. If you have had a positive serotologic test (i.e. number greater than 7...particularly if it's greater than 10), you have celiac disease. In very simplified terms, B cells produce these antibodies, and will continue producing antibodies when you consume gluten. If you stop eating gluten, the B cells will stop producing as many antibodies....but the B cells are still there and remember their target. So, if you're completely off gluten, your antibody test will appear falsely normal, but, again, your immune system is ready and waiting to attack your gut cells again at the next gluten insult. 

But @Hopelessly confused said that after her positive lab test a year ago, she continued to consume gluten daily up until her next set of blood tests  which then turned out to be negative.   She had a complete celiac panel which included the EMA, TTG and DGP.   She is not IgA deficient.  
 

I think long term members on this forum realize that once off gluten, antibodies will normalize (in most cases).   Perhaps you misread the original post.  
 

@Posterboy does recall (and shared some information) that some other illnesses may cause elevated TTg antibodies other than celiac disease.  I have never seen all three celiac tests to be elevated from other illnesses while on this forum.   Could pregnancy suppress antibodies as related to autoimmune disease?  Or is this a lab mix-up?  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I’ll add my 2 cents worth into this and no, I am not a doctor.  Being pregnant suppresses your immune system to an extent.  We have had people on here previously, I remember, who had GI problems pre-pregnancy, got pregnant and felt much better, and then when they had the baby, all hell broke loose.

It has been noted on some studies that smoking can be protective against Celiac.  Possibly from the fact that it suppresses your immune system to a certain extent. I used to smoke and 4 months after I quit, I got horribly sick with Celiac and was then diagnosed. I did have symptoms before I quit but they were not nearly as bad as when I quit smoking. 

As your first testing had the slam dunk of a positive tTg and positive EMA, you are definitely a Celiac.  Those 2 combined positive tests give you something like a 98% chance of it being Celiac. I had those 2 positives also and I definitely have Celiac.

Stay gluten free going forward and your baby should be fine....and so should you!  Congratulations and best wishes!

 

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5 hours ago, Gemini said:

I’ll add my 2 cents worth into this and no, I am not a doctor.  Being pregnant suppresses your immune system to an extent.  We have had people on here previously, I remember, who had GI problems pre-pregnancy, got pregnant and felt much better, and then when they had the baby, all hell broke loose.

It has been noted on some studies that smoking can be protective against Celiac.  Possibly from the fact that it suppresses your immune system to a certain extent. I used to smoke and 4 months after I quit, I got horribly sick with Celiac and was then diagnosed. I did have symptoms before I quit but they were not nearly as bad as when I quit smoking. 

As your first testing had the slam dunk of a positive tTg and positive EMA, you are definitely a Celiac.  Those 2 combined positive tests give you something like a 98% chance of it being Celiac. I had those 2 positives also and I definitely have Celiac.

Stay gluten free going forward and your baby should be fine....and so should you!  Congratulations and best wishes!

 

I kept meaning to come back and reply basically this. I have wondered for years why my symptoms resolved with my two pregnacies. I had celiac since childhood but wasn't diagnosed until mylate 40's. Except for morning sickness with my second child I felt better pregnant than not but after each my celiac symptoms including DH came back. Things were really severe after my second child was born and it would still be years and lots of damage before I was finally diagnosed. IMHO with your high positive tests you should consider yourself celiac and do be aware that all first degree relatives should be screened. The little one should be screened periodically throughout childhood also. Congratulations and hope things go smoothly for you. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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