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Member Since 31 Oct 2012
Offline Last Active Nov 18 2012 03:41 PM

Topics I've Started

Celiac Testing - What Should I Expect? (And A Backstory)

31 October 2012 - 07:06 PM

I think I might have celiac disease, have scheduled some doctors appointments and need some advice.

I'm 22, and after 7 years of increasing "food allergy" symptoms I finally decided to get a food allergy test. It was the IgG test, though, which some argue isn't worth doing at all. However, I tested "avoid" on the sliding scale for gluten, gliadin, and wheat (among a few other things, but I'm hoping to heal my gut and reintroduce those others slowly).

Around January I was starting to hear a lot about celiac disease, and after looking at the symptoms decided that it was a possibility for me. I was experiencing flatulence, diarrhea, bloating, fatigue, the list goes on! I tried half-heartedly to stay gluten-free, but couldn't really stick to it because I always came back to the thought "but what if I'm doing this all for nothing!" When those IgG test results came back, though, I took my last bite of gluten a day later and said goodbye to wheat forever (or so I thought).

Then, in the past few weeks, I've just really been wanting to get tested, diagnosed, the whole shebang. There are a few reasons behind this. 1) simple curiosity 2) so little is known about "gluten intolerance" that maybe if I'm just gluten intolerant and don't have celiac disease there may be different options for me down the road, 3) If I do have celiac disease, I'd like to be able to participate in clinical trials to help other folks with the same disease... and of course there are more. So long story short (too late), I scheduled a visit with a gastro and started eating gluten again. I thought it would be exciting to eat a bagel and pizza and yummy stuff again, but boy was I wrong!

The first day of my gluten challenge I went into Subway and literally felt like a kid in a candy store, with the world at my disposal! I was so excited, but also felt pretty strange, since I had gone through this grieving process for food, and had finally come to terms with the fact that I just wouldn't be eating wheat bread again. But I finally bit into it and, eh, it wasn't as good as I had anticipated. But about half an hour later is when it really went downhill. I had a migraine, bloating, shortness of breath. Ugh, my first gluten meal and I couldn't even comprehend the thought of doing that for an entire month!

Here are my symptoms, after a week of eating gluten:
- headaches (started as migraines the first few days, now are better but still pretty bad)
- bloating
- diarrhea
- flatulence
- shortness of breath (I'm always feeling like I can't get a deep breath)
- VERY dry skin (I've battled with dry skin my entire life, except for the 3 months that I was completely gluten-free)
- Heartburn (I had acid reflux as an infant, and started getting frequent heartburn around the age of 11. I have been on and off of, but mostly on, antacids since then, except for the last 3 months the heartburn has gone away!)
- ADHD symptoms returning (have been medicated for this, but it wasn't a problem when gluten free)
- Fatigue
- Nasal Congestion (though I am a preschool teacher, so this may just be a bug from one of my kids, hard to tell where the sore throats and stuffy noses come from!)
- Raynaud's symptoms increasing (I was diagnosed with Raynaud's phenomenon around age 13, screened for some types of LUPUS, etc. I hadn't really noticed it lately, but my gluten-free months were summer, so the colder weather may have something to do with this, so it's auto-immune, so might there be a link?)

What should I expect from my doctor visit? I won't get into details about health insurance, but due to the HMO zoning (I live in Idaho and am insured in New York) I will only be in the proper area to get office visits covered for 3 days. Luckily, even though I'm a new patient, I was allowed to schedule an initial consult with the gastro and then an endoscopy for two days later, even though he hasn't seen me before. But now I'm just worried that I'll get there and he won't want to do the endoscopy, will want to do more testing that will take longer than the 3 days I have.

What should I ask during the consult? Is there any specific testing that I should request, should I go prepared with a list of symptoms? I've just not dealt with doctors for celiac disease before, and haven't even been to the doctor in a little over 2 years, so I'm kind of terrified of not asking the right questions, pushing the right buttons, to get what I want, which is ultimately a celiac diagnosis, or the knowledge that it's not what I have. Anyone who has been though this with any advice for me, I would so appreciate it. Even some advice about how to get through the gluten challenge, because I feel like it's already sucked the life out of me and I still have 3 more weeks to go!

I apologize for writing a book, I just didn't really know where to start and figured the more you know, the more advice you'd have for me. Thanks in advance for your help :)

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