2 roundS of biopsies, blood tests and a gluten challenge with no answers...

[Mom.2.celiac?]

I'd love some help from anyone furthee up this learning curve!  We can't get to a diagnosis of celiac... is this supposed to take forever?  The testing has been going on for 4 months now. 

She's just turned 6.

Oil floating in toilet with a #2 sent us up this path. 

Celiac panel=negative 9/2016

Biopsy= EoE (15) in her esophagus and mild damage in intestines 9/2016

Biopsy= completely healed late 11/2016

Gluten challenge= 12/10/2016, ended 12/20/2016 due to pain

 More bloodwork IGA= 1 which is normal (?)

Brothers' celiac pannels=normal

Parents'= pending

Paternal family history= grandmother severe GERD

Maternal history= great grandparents both had severe autoimmune, mother 11years of chronic urticaria (hives), celiac and chrons among 2nd cousins

We are so confused.  I'd love help with questions to ask our tests to run. If you can help us in any way, please do!   Thanks in advance!

Lucy

 

Any pictures available (oil, esophagus etc...)  This is September's biopsy (immediately told to try gluten-free) followed by November's. 

 

[GFinDC]

Hi Lucy,

The doctor screwed up by letting/telling you to have her go gluten-free before testing was completed.  That's always a mistake.  The antibodies that they test for are going to decline once a person goes gluten-free.  The University of Chicago celiac center recommends 12 weeks of eating gluten for blood antibody testing, and 2 weeks of eating gluten for endoscopy testing.

My understanding is that she had damage on the endoscopy that healed when  she went gluten-free?  There's obviously a connection between eating gluten and damage to her body.

I wonder if they did the complete celiac antibody panel?  Often they do just the ttg IgA and not the DGP IgG and DGP IgG.

You may not get a diagnosis at this point and that is the doctors fault.  If she can't complete the gluten challenge then there is no testing to do.  There is a diagnostic protocol that is used sometimes with children that includes considering the response to the gluten-free diet.  Along with  several other possible indicators.  But its not used very often.

The damage in her initial endoscopy pictures looks pretty severe to me.  But I am not a doctor.

You may just have to take her gluten-free for life without a diagnosis.

Welcome to the forum Lucy!

[Mom.2.celiac?]

Thank you so much for your response and the warm welcome.   She had gluten for 6 years before the 1st blood test.   They took 2 vials of blood. They ran a full celiac panel and it was all negative.  

 

It is frustrating that he told us to go completely gluten-free. We did 2 months of gluten-free.

 

Yes the damage healed completely in 2 months of being gluten-free. 

What else causes intestinal damage?  I'm so confused.  

I'm in Dallas.  He said it was strange for the biopsy to be inconclusive.   

What do you think about genetic testing to see if Celiac is even possible? 

 

[cyclinglady]

I am sorry that your child is sick.  

Nice to have a picture (I am not a doctor) but it looks like there was redness and inflammation on the first and then a nice pink, but what did the pathologist report indicate?  What was the Marsh rating?  My own endoscopy on the visual looked normal per my GI.  I had to wait for my pathologist report that came a week later.  My biopsies revealed villi damage was moderate to severe (Marsh Stage IIIB).  

I would suggest that you get all reports to insure that everything was done properly.  Not all GIs are celiac savvy.  Plus,  I am not sure you understand what a complete panel is:

Open Original Shared Link

There are other things that can cause villi damage other than celiac disease:

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[Mom.2.celiac?]

Here is the report

 

[Mom.2.celiac?]

[Mom.2.celiac?]

Celiac comprehensive panel

[Mom.2.celiac?]

Thank you so much to anyone who can help me up this learning curve! 

[squirmingitch]

She did not receive the full celiac panel. This is so heartbreaking!!!! And makes me soooooooooooo angry!!!!

This is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

AND (I am no doctor) but her biopsy indicates celiac!!!!! That reads like it should for celiac as far as I can tell. this does NOT say that she shows no sign of celiac. This is a travesty! Get rid of this doc NOW. Take the records & find a celiac savvy GI for her & show that doc & explain all this that she has been put through and what a botch job the doc did by not dx'ing her.

Read this in reference to the biopsy:

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Can you show the rest of the page there? How many biopsies were taken & from what areas of the small intestine?

[Mom.2.celiac?]

Here is the whole page.  It doesn't say how many.  I think he told me he took 4 biopsies ateach location.

Do they store the blood for any period of time? 

[Mom.2.celiac?]

Here is the whole page.  It doesn't say how many.  I think he told me he took 4 biopsies ateach location.

Do they store the blood for any period of time? 

[Mom.2.celiac?]

The paperwork from her procedure(s)

The 2nd is on the bottom and you can compare before and after pictures. 

[Mom.2.celiac?]

Thanks again to everyone.   I was able to look up Marsh scoring and that was very helpful.   She didn't get a score like that on her report.  I'm guessing she would be a 3.

 

We see her pediatrician tomorrow.  I'm bringing everything with me.  My celiac panel is pending. 

She's so little (45 pounds).  She's had her tonsils and appendix out, 3 broken bones and 2 biopsies.   I'm just so tired of anesthesia. It scares me every time.  The following scene is not my favorite! 

[GFinDC]

Hi,

The endoscopy does say the results are suggestive of celiac disease.  They also found possible eosinophilic esophagitis evidence.  Basically, her esophagus is irritated and inflamed.  A 2nd opinion is a good idea IMHO.  Find another GI who is familiar with celiac disease diagnosis.  There may be a celiac support group in your area.  If so, they may be able to recommend a good GI.

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[frieze]

9 hours ago, Mom.2.celiac? said:

 

Do they store the blood for any period of time? 

probably not this long but ask any way.

[Mom.2.celiac?]

My doctor is on the suggested doctors on the dfw celiac support Web page.  I looked them up last night.  

My pedi GI said the results were inconclusive. I think he is hesitant to diagnose her.  I see her pediatrician in am hour and hopefully get my pannel back later today.

I do appreciate having others look over this as my friends and family can sympathize but I'm needing help.

[Mom.2.celiac?]

35 minutes ago, GFinDC said:

Hi,

The endoscopy does say the results are suggestive of celiac disease.  They also found possible eosinophilic esophagitis evidence.  Basically, her esophagus is irritated and inflamed.  A 2nd opinion is a good idea IMHO.  Find another GI who is familiar with celiac disease diagnosis.  There may be a celiac support group in your area.  If so, they may be able to recommend a good GI.

Open Original Shared Link

Yes.   She's been in the ER with this in the last 6 weeks as well.   It was completely healed by the 2nd biopsy.  I don't understand that either...  I will check out your link. 

[GFinDC]

Well, she didn't heal for no reason.   If the only change was taking her off gluten, then that seems like the important thing.   How can the doctor say her gut damage is not related to gluten if she healed when she was off it?  Riddle me that one Batman!    I hope you get some "official" doctor answers soon.  Unofficially, my section of the peanut gallery is shouting "celiac disease, without a doubt!"

Healing in the gut when the only change is going  off gluten seems like it removes other most causes of possible gut damage.  Her picture seem to show "scalloping" which is a term used to describe celiac damage.  Usually indicating pretty severe gut damage IMHO.

Open Original Shared Link