Friday, December 17, 2010

To biopsy or not to biopsy

Today we paid a visit to the gastroenterologist at the Hospital for Sick Children in Toronto. We've kept Etienne on a strict gluten-free diet since the end of October because he had lost 1/5 of his body weight in less than 2 months and had severe diarrhea whenever he consumed any gluten at all.  This, however, poses a problem for strict scientific diagnosis of celiac disease.  In order for blood tests or a biopsy to be accurate, the patient needs to be consuming gluten on a daily basis for several months prior to the tests.  We knew this going in to the hospital, but went mainly for the advice and direction we hoped to get from the doctor.  Unless a biopsy is performed, there cannot be a strict scientific diagnosis of celiac.  However, even on a gluten diet, there is much scientific evidence that shows that tests are not always reliable in children under the age of three.

So what's a parent to do?  The only treatment for celiac is a strict gluten-free diet, which we have him on.  We submitted to some blood work to see if anything could be detected through the blood, but again, his age and the fact that he's been gluten free for almost 2 months can affect the results.  We are scheduled to return for a follow up appointment in six months.  While unable to confirm a diagnosis of celiac at today's appointment, the doctor did agree that there are two aspects to diagnosis; one being the scientific tests, and the other the lived experience of the patient.  Etienne's chronic diarrhea, irritability and weight loss, coupled with his complete turnaround once the gluten was removed are signs that cannot be ignored.  He suggested we keep him on a gluten free diet until the follow up appointment, at which time we can discuss whether we want to put him on the gluten challenge, where he will consume gluten each day for a few months and then submit to a biopsy.

At this point, I'm not inclined to submit to the biopsy.  I'm not against the testing, I just think that we might wait until Etienne is old enough to understand the process and also help vocalize what he's feeling when he consumes foods with gluten.  Right now, we only see the diarrhea, but he's too young to explain any other symptoms he might be feeling.  Ultimately, whether he gets categorized as someone with a gluten intolerance or as someone officially with celiac disease, the treatment is the same: a strict gluten-free diet.  We've committed to the diet, so I'm comfortable waiting until my son can be an active part of the process before moving to the next step in the diagnostic process.


  1. My family recently went through a similar situation. My 2 year old daughter (we are fairly certain) has Celiac's and/or gluten intolerance. I just found your blog today. Thank you for sharing what you learn. <3

  2. This sounds like our story. Hunter is 3 and has already had 2 biopsies. we have been dealing with celiac since he was 8 mos. old when in 2 mos. he had dropped from 99%-1% percentile, diarrhea, stopped sitting/crawling, irritable just to name a few. He has been thriving on the gluten free diet for over 3 years; however, I was attempting another diagnosis to get him into school. The hospital wanted us to do the challenge for 3 mos., but was shortened when hunter started sleeping 16+ hours/day, return of the "gluten poo", loss of appetite, and so much more. We did the biopsy, but it was inconclusive again. At this point, Hunter has a doctor's order for a gluten free diet due to allergy that will get his needs met at school. we have chosen to wait because there are so many reprecussions that I do not want to make him deal with. Seeing him in pain, fatiqued, and not his normal, happy active self was all the proof we needed that we were doing the right thing. We haven't given up on the official diagnosis, but I guess I am hoping time & research makes diagnosis in the future easier. On a side note, I have signs of celiac as well since age 4 and I recently did a biopsy after a short contamination (dr said he wanted a starting point). I was in so much pain thanks to return of chronic migraines, abdominal pain, etc... My biopsy showed damage, but they said I should just take a really expensive antibotic to get rid of the pain. It was frustating because I was hoping it could connect the dots for Hunter and our 1-year-old son who is displaying similar signs. With that being said, keep in mind that no matter what path you choose just make sure it is what is best for the little one.

  3. Hippie Mom,

    I completely understand your frustration. It sounds as though you know what works for your son, so putting him through pain or discomfort for a diagnosis is a tough decision to make.

    Your blog is a great idea, I could use some money saving tips. Gluten free food can be expensive! I tried sending you a message through your blog but I don't think you have a section for comments.

    Have a great Christmas!

  4. I only recently found your blog. My daughter has been gluten free for 3 years. She was diagnosed with Celiac disease through bloodwork only. We were going to have to wait a minimum of 4 months for a biopsy and in that time keep her on regular food. Due to other issues she was having at the time, and other tests she needed to have, we decided to go gluten free based on the blood work alone.

    Our GI doctor said she may decide to have the testing done herself, and we'll cross that bridge when we get to it. Any decisions like that will be discussed with both her GI doctor and neurologist, as I am convinced there is a relationship between her celiac disease and epilepsy.

    1. It was a hard decision for us too, but our son just reacts so badly when he eats it that there was no way we could put him back on gluten for any amount of time. We've left the door open for him to decide when he gets older as well. I'm convinced there's a connection between celiac and many, many, conditions.

  5. I am going through this with my kids right now... it's tough. On one hand, I already know that they react to gluten. On the other, because Celiac is autoimmune and has a genetic connection, I think it would be valuable for them to know for sure if that is what they have. Also for my teen and tween, I would like to know how careful we need to be when we're out of the house... however the gastro at the children's hospital said it could take 3-12 months back on gluten to get a positive result. I cannot imagine putting all four of them back on gluten for up to a year, especially when three react to any exposure at all. It's so tough! I wish I would have understood this process better a few years ago.