Should My Daughter Have A Biopsy?

[Suzembro]

Hi, firstly I would like to say what a great website this is with so much useful information.

 

My 17 year old daughter has had so many health issues over the past few years with so many doctors appointments, tests etc but still no diagnosis. I won't list all her symptoms as they are so many but she is feeling so depressed at being sick all the time especially when people make her feel like it is all "in her head". 

 

We suspect it may be Celiac disease and she is due for a gastroscopy in two weeks. Her doctors had always discounted Celiac as her blood tests were negative. However a new doctor said she still may still have it and a biopsy is the only way to confirm it. As my daughter suffers severe anxiety she did not want the biopsy so I suggested to her to try going gluten free for a while and see if she felt any better. If the gluten-free diet did help then she could get the biopsy. Well she did start to feel a bit better so I booked the gastroscopy. What I didn't know was that going gluten free for two weeks could affect the biopsy result so she was advised to eat gluten for six weeks before getting it done.

 

Well it has now been four weeks and she feels horrible every day and just wants to stop eating gluten even though she loves bread. If going gluten free makes her feel better does it matter if she gets a diagnosis of celiac disease confirmed? If the biopsy is negative she may have NCGI so will have to go off gluten anyway. Or are we better just to stick out the next two weeks and find out for sure.

 

My paternal grandfather had celiac disease as does an uncle and cousin on that side of my family. My daughter's paternal Grandmother has NCGI so I also wonder if she should get a genetic test but I don't know much about these.

 

Any advice would be greatly appreciated. 

[celiac sharon]

I think she should stick with it and get the diagnosis. As time wears on, and she feels better, she may fool herself into thinking it's okay to have gluten if she wants to because she isn't a "celiac" because she doesn't have the diagnosis. Plus, as treatments come dOwn the pike, she may not qualify for them without a actual diagnosis.

[squirmingitch]

I agree.

[BlessedMommy]

Yes! I run across so many people who are "gluten free" but think that it's okay to have just a little bit since they're "not celiac." (even if they haven't been tested to rule it out)

 

I wasn't able to be diagnosed and I manage good dietary compliance and don't cheat, but I've had very serious complications from gluten. People with milder symptoms may not be as motivated not to cheat.

[Suzembro]

Thanks guys, I was hoping someone would say "no don't worry about the test" as she has had so many blood tests and ultra sounds show up nothing that it is hard to put her through such a procedure. As much as I would like for her not to have celiac disease I am kind of hoping it does show up as years of not having a diagnosis has been so hard. She has recently left school as a lot of days she would feel too sick to go and that compounded her anxiety as she found it hard to keep up. Teachers and family members blamed us for her poor attendance and that we should just make her go to school. Seriously, who would choose to go from a confident, high achieving, popular student to someone who can't eat and sleep, has panic attacks, stops going to parties and social events, and cries nearly every day. 

I will encourage her to stick at it and try to enjoy her possibly last MacDonalds and Tim Tams. 

Cheers

Suze

[Cara in Boston]

I do think it would be great to have an actual, concrete diagnosis.  However, there is a chance you could go through all the pain and suffering and the biopsy could STILL be negative and that will not rule out celiac.  It just means the damage was not found, NOT that she doesn't have it.  The doctor could miss it, the gluten challenge might not have been long enough, (my doctor said 6 months eating gluten), etc. etc.  If she is told she does NOT have celiac (when it kind of looks like she does) then she might feel free to continue to eat gluten - even occasionally - and her health will not improve.

 

Some doctors won't diagnose without a positive biopsy.  Others will take into account family history, symptoms, response to the gluten free diet, etc.

 

Some schools, colleges, camps, will require an actual diagnosis in order to provide accommodations.  Of course, a diagnosis of gluten intolerance would also work in this case.

 

What blood tests did she have?  Maybe she was not given the whole panel (not uncommon) . . . maybe if you revisit that you could get more information.

 

Anxiety and depression are also symptoms of celiac disease.  

 

From my experience, my youngest son was diagnosed first.  Once I learned about celiac disease, I realized I had most of the classic symptoms for about 5 years.  I was extremely anxious, but I attributed it to being sick all the time and my doctor not finding anything wrong with me.  My blood tests were positive, so I went gluten free with my son.   Suddenly felt great.  Then doctor wants to do biopsy.  Says I hadn't been gluten-free long enough to change outcome so I did.  Biopsy was negative.  New doctor (at Celiac Clinic) says to go back on gluten for 6 months and do another.  I made it about 6 weeks and felt terrible again.  Stopped and just went gluten free.  I didn't need a positive biopsy to tell me I shouldn't be eating gluten.  My doctor diagnosed me with "gluten intolerance" even though I had positive blood tests and a son with celiac.  I clearly have celiac, but who cares?  Treatment is the same.