Endoscopic Biopsy or Not?

[dmc]

My teen daughter just got back her Celiac blood panel. Her deamidated gliadin IGA was 68 (> 20 is positive from this lab). All other tests in the panel were negative (transglutaminase IGA/IGG). Her immunoglobulin A was 84 (ref. range is 57 to 300).

For physical symptoms she has pretty continuous gastric distress (diarrhea / soft stools about 4 or 5 times a day), moderate to severe dizziness, frequent numb hands/feet, some memory recall problems lately, jittery hands (she is an artist and this one being worse recently is noticeable and troubling for her), lethargy, severe thirst (she is drinking a ton of water), and an odd taste in her mouth.

She stopped eating gluten a several months ago on her own because of the gastric distress for a 2 or 3 weeks. She said that seemed to help with the gastric issues. A couple of months ago she started back on gluten and the gastric problems returned, and lately the other symptoms appeared or worsened. Her symptoms finally became troubling enough that we went into the pediatrician 2 weeks ago and had the blood panel done.

One complicating factor is that she is on a pretty good dosage of both Lamictal and Bupropion (Wellbutrin). She has been on them for over a year and tolerates them with minimal side effects. That said, some of the common side effects for those meds are the ones I listed above (and can appear months/years into taking the medicine) so we aren't sure which of her physical symptoms might be coming from the meds and which might be from Celiac.

From what I've read it sounds like having a positive deamidated gliadin IGA is pretty solid indicator of Celiac. Throw in there her symptoms and it sounds to me like a pretty definitive case of Celiac? Does anyone know the odds of a false positive at her level (68)?

We are planning on going to the GI and I'm pretty sure he is going to recommend the endoscopic biopsy. My daughter has severe needle phobia (I cannot stress severe enough), so the thought of going through the procedure just to find something that is already almost guaranteed to be positive doesn't sound appealing.

Anyone have advice? To me it doesn't seem like we gain that much by doing the procedure. I do realize, however, that trying to do the procedure later (after she is gluten-free) would be a pain because of the gluten challenge required. What I'm hoping for is that given the data we already have (blood work and symptoms) we can declare that she has Celiac disease and move forward with the appropriate diet changes (for life).

[cyclinglady]

Welcome! 

I am sorry that your daughter has been sick.  I am a celiac who tested negative to everything but the DGP IgA too.  I have Hashimoto's thyroiditis as well (another autoimmune disorder commonly with celiac disease).  Better yet, I have a 16 year old who hates needles for good reason -- they can never access her veins!  She has not tested positive for celiac disease yet.  

I think you need to discuss this with the GI.  The gold standard of celiac disease diagnosis are biopsies obtained from an endoscopy.  I understand your concerns, but the endoscopy can find other issues.  celiac disease requires a life-long commitment to adhering to a gluten-free diet.  I am not going to sugar coat it -- it can be hard socially and mentally.  Not impossible, but if there is doubt.....

Now some folks can not get the endoscopy for many reasons (dangerously  sick, financially impossible or a long wait time depending on healthcare/country).  Their  doctors often are willing to give a diagnosis based on follow-up testing and improvement of symptoms on the gluten-free diet.  

What is best for her?  You are both going to have to make that decision.   

I wish you the best!  

[SewHappy]

Hi,

Cyclinglady gave you good advice. I was just diagnosed on January 9th, so little over a month ago. So I've just begun my journey and still have a lot to learn. 

I would however recommend getting the biopsy for the following reasons.  it's my understanding that a lot of other complications or conditions can accompany celiac.  So it's important to have a correct diagnosis rather than an assumption that you use to make further assumptions. For example, if you assume your daughter has celiac, and another issue appears, you'll then look for conditions that will fit with a celiac diagnosis, for example maybe Hashimotos, and it could be something else entirely. I'm not sure if my example even makes sense, but it just seems unwise to base something serious on speculation.

If you don't know for sure, it might be easier to cheat and eat gluten.

if it's not celiac and you go off the assumption it is, you still haven't treated the underlying issue, and it could be that she needs to switch her meds up, for example.

it's hereditary, and so I think it's important to have an accurate health history to pass on to children.

finally, I am willing to bet that your daughter is not the first person doctors and anesthiologists have come across with strong needle aversions. Talk to the doctor about options. If that doc doesn't provide a solution find another doctor.

based on my own experiences, you will be your own best advocate and the best advocate for your daughter. When I first started having issues, my doc said it was GERD. I knew it wasn't, and I went to different doctors. I don't have real traditional symptoms or severe symptoms, but they did a blood panel because my aunt has a confirmed celiac diagnosis. I have Selective IgA Deficiency so the blood test was null. The biopsy showed the sprue seen in celiac patients, which is also seen in tropical sprue. I've spent time in tropical areas where I could've contracted tropical sprue, but docs are content to leave it at celiac. So I will follow up after eliminating gluten and maybe it'll be tropical sprue, which has a totally different treatment protocol. I shared my story just to help emphasize how important a correct diagnosis is.

its ultimately up to you, but considering that you may inadvertently ignore the root cause of the issue based on a good guess, it's not a risk I would take with my loved ones.

best of luck to you!

 

 

 

[dmc]

Thank you both for the replies. We saw the GI today and she will be getting the endoscopic biopsy so we can determine exactly what is going on and the see extent of the disease/damage.