Celiac or Intolerant? Which doc is correct?

[Gretchen4]

In 2007, after years of illnesses and issues, my then 9 year old daughter was diagnosed with Celiac.  She went gluten free, and the results were amazing.  
She is now 24, and about a year or so ago her new doctor retested her and told her she is not and never was Celiac.  This new doctor ordered her original test results and doctors notes and apparently they said she was intolerant, not officially Celiac.  
Now, the experts that did the endoscopy and colonoscopy told me that based on the results of her testing, and the following time period of changing her to being gluten free proved that she did in fact have Celiac.  I KNOW that I have paperwork from her local pediatrician with the diagnosis on it.  
My daughter is angry, understandably.  She even has a medical tattoo that she got on her own when she was 18 that says Celiac on her wrist.  

She has been eating gluten for over a year now.  Since then she has been diagnosed with IBS and PCOS.  
I finally got brave enough tonight to suggest to her that after the holidays she go gluten free for 2 months and see how she feels, how her body reacts.  To have her levels tested before she does the trial and again after.  
She was not very in tune with that idea.  I even suggested she get a 3rd opinion, and stressed that it is not because I want to be right, but doctors are all human and all have different degrees of knowledge and experience, etc, and that I just want her to be as healthy as she possibly can be. 

She is convinced that she does not have Celiac, that she never had Celiac, and that she lived a lie for most of her life.  In our small town, she was the first child in our school system to have it.  Her friends were always supportive and protective of her, almost as much as me.  Unfortunately, it was part of her identity because it was a new, unheard of rare disease in our town at the time. 

Has anyone experienced anything similar?  Do you have any advice or experiences to share?

Thank you in advance!!
~gretchen4
 

[trents]

Welcome to the forum, Gretchen4!

In 2007, what tests were used to arrive at a celiac diagnosis? Can you post the test results and original testing physician comments? If your are willing to post the results, and I assume this was antibody testing, please include the reference ranges for negative vs. positive as there is no industry standard and every lab uses their own.

You say she was tested again about a year ago and the test results were negative. But at that point she was eating gluten free if I understand you correctly. If so, of course the test results would be negative. Testing for celiac disease is not valid once a person has started and been on a gluten free diet even for a matter of weeks.  The reason is, in the tests are designed to detect antibodies produced by the body's inflammation response to the ingestion of gluten. If you cease consuming gluten, the inflammation dies down and no antibodies are produced. The the doctor who did the most recent testing ask whether or not your daughter had been eating gluten free when the retesting was done?

[NNowak]

Doctors are human. Many people declare themselves “Celiac” without the appropriate testing. Also, if your daughter was on a gluten-free diet for a number of years, any celiac labs should be negative. 

That said, your daughter is an adult and will need to find her own way. I have 4 children ages 24 to 15. My 24 year old was diagnosed by different docs at age 14 months, 2 years and age 9. He’s old enough to know what he needs, but he chooses otherwise. My 15 year old was diagnosed NCGS and struggles daily, but won’t give up bread or dairy. Eventually they will have to change, but it’s not going to happen until they choose. 
 

Hopefully your daughter will find that she feels better without gluten. We don’t need a name or a doctors permission to do what know feels best for us. Good luck navigating this. 💕

[Scott Adams]

It would be great if you could share her test results with us. It's possible she had: 1) Elevated antibodies, perhaps just below the celiac disease marker level; 2) Non-definitive biopsy results--these results can vary greatly depending on the gastro who takes the samples; 3) Symptoms that went away after going gluten-free, which is another way of confirming a borderline or "potential celiac disease" case.

The fact that her symptoms may have returned after eating gluten for a year could mean that she has non-celiac gluten sensitivity (there is no test for this condition, but ~10x more people have it than do celiac disease), but you should do another celiac disease blood panel before she goes gluten-free. To re-test she needs to be eating gluten daily for 6-8 weeks, at least two sliced of wheat bread daily. 

You could order the blood tests online at: https://www.imaware.health/

[Stephani C]

If I could tag onto this, I’ve had celiac disease diagnosed now for 5 years. I am in remission with a gluten free diet which means strict adherence to zero cross contamination as well as gluten ingredients. Of course this is a radical approach, but I mean… I have an autoimmune disease. As time passes and my exposure to people witnessing the way I manage the disease increases, I keep hearing (with a judgy tone), “Oh wow, you’re really sensitive”. People share stories of having friends who eat out or aren’t quite as strict and I’m troubled by this. You either have the disease, which means you suffer an immune response, or you don’t. What does it mean to have celiac disease “light” and be on a range sensitivities? Don’t we all suffer small intestine damage which we can’t feel? That whole conversation is perplexing. Thank you for letting me drop in. I am hoping it’s relevant. I can’t wait to hear what people say in this community, because by and large people think gluten sensitivity when I have to share my dietary restrictions. Stay well everyone!