Question about Biopsy Staining

[BergieF]

Has anyone ever heard of biopsy staining for those that have been on a gluten free diet?  My doctor recommend this to me since I have been been on a very restrictive gluten-free diet for 2 years.  The past 4 months I have been completely gluten-free since my daughter was diagnosed with celiac disease.  The full blood panel came back negative and the doctor told me to not eat gluten for the EGD that would be done.  The staining should pick it up.  I've never heard of this....

[Awol cast iron stomach]

Hello. I have not heard of this in particular but was eager to read your post. I hope someone knowledgeable on the topic will chime in. I too gave up gluten years ago being a former IBS diagnosed individual two decades back and finding increasing issues that fit celiac. I will not do the challenge due to my decades of potential misdiagnosis and further potential "autoimmune roulette game",  so your Dr info maybe so helpful to me. I am following your post and please update me if it worked for I am still in the process of safely pursuing a correct diagnosis for my children's sake  and continuity of care of myself for the remainder of my life.

Good luck.

[kareng]

They often put stains on samples to help them see things.  It's why, if you look for a picture of intestinal villi, they are often purple.  They aren't really purple in real life.  

It won't help, if you have been gluten-free for years or even months, to find damage that has healed.  That's just stupid.

Edit - it's a stupid thing for a doctor to say.  

[kareng]

Open Original Shared Link

 

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional. December, 2012

[BergieF]

1 hour ago, kareng said:

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It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional. December, 2012

That is exactly what I've read everywhere.  Next  Friday is my test, now I'm feeling like it will be all for nothing.   I have a 6 and 4 year old that are showing signs of Celiac Disease too.  The younger one has lost 3 lbs in two weeks.  Our pediatrician says he wants to see if I test positive first before my younger children are tested.  My daughter who's 12 was diagnosed 4 months ago but looking back, she's shown subtle signs since she was a toddler.  It's sad that these test have to be pushed for. That the patients have to say "could this all be Celiac Disease"!

[cyclinglady]

Karen is right about the staining.  Here is more supporting evidence that states that you must be on a gluten diet before any testing (antibodies or biopsies) for celiac disease diagnosis.  

Open Original Shared Link

Be sure to read the Diagnotics chart figure 2 which states "not on a gluten free diet":

Open Original Shared Link

You really have two choices: 1) go back on gluten for 12 weeks and get tested or remain gluten free and consider yourself a celiac.  I have a diganosis, but my hubby went gluten free long before I did based on rather poor advice from two doctors.  The diet worked.  Does he have celiac disease?  We think so, but we will never know.  I am glad that you are supporting your daughter and are keeping her safe!  

 

 

[lisas11lisa]

16 hours ago, kareng said:

Open Original Shared Link

 

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional. December, 2012

I do not have a confirmed diagnosis with a biopsy..insurance wouldn't ok the procedure because I had an earlier scope for a hernia..whatever..Dr is 99.9 % sure I have Celiac Disease..tons of symptoms for 25+years..I've been gluten-free for over 4 years..and I will never knowingly ingest gluten again..it is not good for anyone..goodluck to you!

[BergieF]

On 7/8/2016 at 1:26 AM, cyclinglady said:

Karen is right about the staining.  Here is more supporting evidence that states that you must be on a gluten diet before any testing (antibodies or biopsies) for celiac disease diagnosis.  

Open Original Shared Link

Be sure to read the Diagnotics chart figure 2 which states "not on a gluten free diet":

Open Original Shared Link

You really have two choices: 1) go back on gluten for 12 weeks and get tested or remain gluten free and consider yourself a celiac.  I have a diganosis, but my hubby went gluten free long before I did based on rather poor advice from two doctors.  The diet worked.  Does he have celiac disease?  We think so, but we will never know.  I am glad that you are supporting your daughter and are keeping her safe!  

 

 

I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    

[cyclinglady]

Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously.......

Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 

[BergieF]

I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  

[cyclinglady]

Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.  

In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.  

My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.  

It certainly sounds like your younger children should be screened.  

I wish you both well!  

 

 

[squirmingitch]

I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!!

And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous! 

I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!

[BergieF]

1 hour ago, squirmingitch said:

I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!!

And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous! 

I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!

I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!