Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pathology Report - Help Me?

KBart

Recommended Posts

KBart Apprentice
KBart
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

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?  :rolleyes:

cyclinglady Grand Master
cyclinglady
Posted

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 Veteran
squirmingitch
Posted

I agree too! 

squirmingitch Veteran
squirmingitch
Posted

I agree too! 

 

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

KBart Apprentice
KBart
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

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 Apprentice
KBart
Posted
  • Author

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.

  • 3 weeks later...
KBart Apprentice
KBart
Posted
  • Author

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 Community Regular
frieze
Posted

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 Rookie
Bttrfly62
Posted

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 Apprentice
KBart
Posted
  • Author

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 Rookie
Bttrfly62
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    klmgarland
    Newest Member
    klmgarland
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.