Pathology Report - Help Me?

[KBart]

I started a new thread on this since my old one went down a rabbit hole.

My 4 year old tested positive with a TTG test and result was 47 on a range of <20 normal. She has clinical symptoms such as constant stomach pain, constipation, anger and frustration and eczema like rash. Her doctor says this pathology report doesn't support a full celiac diagnosis. Can anyone look and give their opinion? There are 2 things that stick out to me. 1) there was noted villous shortened and elongated crypts. 2) one piece showed mild duodentitis. Thoughts?

 

Open Original Shared LinkOpen Original Shared Link by Open Original Shared Link, on Flickr

 

Open Original Shared LinkOpen Original Shared Link by Open Original Shared Link, on Flickr

 

Open Original Shared LinkOpen Original Shared Link by Open Original Shared Link, on Flickr

[Gemini]

With a tTg of 47 and these results from the biopsy, I don't understand what the doctor meant by the exam not supporting a full Celiac diagnosis, other than to guess that they need to wait until your daughter gets good and sick with much more muscosal damage before they will bless her with a Celiac diagnosis.  She is 4 years old and this is probably the kind of report you would get back on a Celiac who just hasn't sustained the full villous atrophy yet.  And why is that?  Because she is only 4.

 

Those 2 things that stood out are keys, along with her symptoms and tTg results, that you daughter most likely has Celiac.  I would put it at 100% but because I don't wear a white coat and have MD after my name, it doesn't really count.    If it were my daughter, gluten would never pass her lips again but you have to do what you feel is right. 

 

Is there any other disease out there which requires people to become deathly ill before they get a diagnosis? 

[cyclinglady]

I agree with Gemini! Take these results, along with the blood test results and get a second opinion (and not from the same medical practice)!

I wish your daughter well!

[squirmingitch]

I agree too! 

[squirmingitch]

I agree too! 

 

I have no idea why this posted twice.??????

[KBart]

We have a second opinion appointment in 2 weeks. We've been gluten-free since the biopsy and she still has constant stomach pain but some of her other symptoms have lessened (or totally gone away).

Her doctor said it could be early celiac before it caused more damage and said to go gluten-free but like I've heard on here before, you aren't a little bit Celiac, right? Just like you aren't a little bit pregnant. Either you are or you're not! It's frustrating but I'm hopeful the new doctor will have a little more insight.

[cyclinglady]

So, her doctor told you to have your daughter go gluten free? He gave her the celiac diagnosis because she did have some intestinal damage and her blood tests results support a celiac disease diagnosiss, right? Or is he waiting to see if symptoms resolve on a gluten-free diet? It sounds like she is already starting to heal! When does he suggest retesting her to see if her TTG levels drop? Six months?

With the results you posted above, she has celiac disease, but just not the significant damage that many of us have and that is a good thing! Like Gemini said, we are not doctors. My kid has tested negative so far. She will get tested every couple of years even if she has NO symptoms. If symptoms arise, then we will get her tested sooner. If I received results on my kid like you had, we would say she has celiac disease. I would not want to pursue a "better" diagnosis showing severe intestinal damage (not saying you are doing that). Why? Recovery can take longer, chances of other long-term or permanent disease could crop up. Her grandmother died from MS. Do I want to take that risk? Do I want her to develop/trigger Hashimoto's thyroiditis, RA, Diabetes Type I, or Lupus which runs in my family? No!

Get the other opinion (always a good thing) but if your current doctor is giving her the official diagnosis, then take it! Test the rest of your family and learn all about the gluten-free diet because per Dr. A. Fansano, celiac diseas is strongly genetic.

I wish you well!

[StephanieL]

Just to mention that Dr's often have a different set of criteria for little people.  I am not saying I agree with this or that it's right/smart (needing hard core damage before calling it what it is) I am just saying it is not surprising that they are kind of "eh, well, perhaps with those tests and that biopsy maybe, maybe not."  There seems to be a real reluctance to formally dx kids. Not sure why but there is.

In any case, I am glad your kiddo is feeling better, even if not 100%. Hopefully that will come soon!

[KBart]

So, her doctor told you to have your daughter go gluten free? He gave her the celiac diagnosis because she did have some intestinal damage and her blood tests results support a celiac disease diagnosiss, right? Or is he waiting to see if symptoms resolve on a gluten-free diet? It sounds like she is already starting to heal! When does he suggest retesting her to see if her TTG levels drop? Six months?

With the results you posted above, she has celiac disease, but just not the significant damage that many of us have and that is a good thing! Like Gemini said, we are not doctors. My kid has tested negative so far. She will get tested every couple of years even if she has NO symptoms. If symptoms arise, then we will get her tested sooner. If I received results on my kid like you had, we would say she has celiac disease. I would not want to pursue a "better" diagnosis showing severe intestinal damage (not saying you are doing that). Why? Recovery can take longer, chances of other long-term or permanent disease could crop up. Her grandmother died from MS. Do I want to take that risk? Do I want her to develop/trigger Hashimoto's thyroiditis, RA, Diabetes Type I, or Lupus which runs in my family? No!

Get the other opinion (always a good thing) but if your current doctor is giving her the official diagnosis, then take it! Test the rest of your family and learn all about the gluten-free diet because per Dr. A. Fansano, celiac diseas is strongly genetic.

I wish you well!

Yes, doctor said to go gluten-free, but will NOT diagnose her with celiac disease. She says she doesn't have it now. Her doctor said to go gluten-free and see if her symtpoms resolve themselves.  She will not give her a celiac disease diasnosis at this point. Not based on the blood work or the biopsy.  That is why I'm looking for a second opinion. I DO think she has celiac disease and I want a diagnosis. I feel like for school, it is important to have a diagnosis. If she would give us a diagnosis and say it is definitely celiac disease, I would love that! I guess this doctor is just SUPER conservative and wants to see what happens on the gluten-free diet.

 

I guess I'm just confused. If the doctor doesn't think it's celiac disease yet, then what is it? Why is she having stomach pain? What else could it be? The doctor will not say one way or the other. That is what is making me go to another doctor. I want to believe it's celiac disease and not cancer or CF or something worse than celiac disease.

 

Oh and to add, her doctor wants her to go gluten-free and then do a gluten challenge when she's older and re-test! I think that's crazy. I really do. I don't get that part at all. She never suggested re-testing her TTg levels.

[KBart]

So our second doctor says she can't say it's celiac either. Not definitively.

Interestingly enough, she is running additional tests. Thyroid, parasites, occult blood, another Lyme test (my daughter had a tick bite in March, tested negative but doctor still treated), and genetic for celiac. She also ran the TTG again. Initially her TTG was 47. After 5 weeks gluten free, it's 14. Isn't that a really fast drop? Could it have been falsely elevated or false positive?

[frieze]

So our second doctor says she can't say it's celiac either. Not definitively.

Interestingly enough, she is running additional tests. Thyroid, parasites, occult blood, another Lyme test (my daughter had a tick bite in March, tested negative but doctor still treated), and genetic for celiac. She also ran the TTG again. Initially her TTG was 47. After 5 weeks gluten free, it's 14. Isn't that a really fast drop? Could it have been falsely elevated or false positive?

well, isn't that interesting.  doesn't prove celiac?

[Bttrfly62]

So, maybe i'm confused about the blood test results, but i thought a positive TTG-IGA meant Celiac- damage done unknown until endoscopy, but definitely Celiac.... Is it only because she's so young and children are still changing (like allergies at a young age that subside as they get older) that 2 doctors are not interpreting the results that way? So you can have positive blood work and not be positive for Celiac? I knew there were false negatives, but I did not think that positives could also be false. Thanks for the clarification! 

[KBart]

So, maybe i'm confused about the blood test results, but i thought a positive TTG-IGA meant Celiac- damage done unknown until endoscopy, but definitely Celiac.... Is it only because she's so young and children are still changing (like allergies at a young age that subside as they get older) that 2 doctors are not interpreting the results that way? So you can have positive blood work and not be positive for Celiac? I knew there were false negatives, but I did not think that positives could also be false. Thanks for the clarification!

My understanding is false positives are possible due to other autoimmune diseases and liver issues. I don't think most doctors will diagnose based solely on TTG levels unless it is really super elevated. Many still require a positive biopsy. I've read some will diagnose based on positive blood test, positive genetic test, reduction of symptoms on a gluten-free diet and family history. Or some combination of that.

[Bttrfly62]

Interesting- better to be sure than to define without being sure!