My 7yo son was diagnosed via endoscopy last year with a slight gluten sensitivity that was causing acid reflux. Up until that point, I hadn't really given gluten much thought, but we decided the whole family should go gluten free to support my son. At that point, problems that had plagued me my whole life cleared up, including bloating, constipation, and joint pain. I followed a 95% gluten-free diet since last October. I would eat breading on chicken, restaurant french fries, etc with no problem, other than some bloating for an hour or two. Then over the last 8 months, my symptoms started to get much worse whenever I would consume small amounts of gluten. It progressed to stomach cramps, itching on my torso, and a "punched in the gut" feeling. Also, I started reacting to much smaller amounts of gluten than I did previously. When I mentioned this to my son's pediatric GI doc a few weeks ago, he strongly encouraged me to get tested for celiac. Knowing that i have the disease will impact my son's treatment and prognosis for the future.
However, the adult doc I was referred to doesn't seem to be as knowledgeable about celiac and gluten issues. Even though i have been mostly gluten free for over a year, she didn't agree that we should do a prolonged gluten challenge before testing. Instead, she wanted to test as soon as possible, and scheduled my endo 8 days into my gluten challenge (I should be grateful, as that 8 days were the sickest I can ever remember being).
Here were my symptoms for the 8 Day Gluten Challenge:
- "soft poop" & cramps
- stomach ache
- flu-like muscle and joint stiffness
- sore fingers
- itchy skin
- fatigue/"brain fog"
- nagging headache
While I should be happy, I can't help feeling like this isn't accurate. I am a little angry at myself for not advocating more strongly for a longer gluten challenge than 8 days. I have read how hard it is to diagnose celiac disease under normal conditions, but after a year mostly gluten free, I have no confidence that 8 days was enough.
I know it shouldn't matter if I have a diagnosis or not, because given the way I felt for those 8 days, I will never knowingly ingest gluten again. However, I wanted a specific "label" on my symptoms, so I would have a response ready when well-meaning but clueless friends and family push gluten on me. ("Oh, you and your fad diet!" or "A little bit won't kill you." Umm...yes, yes it will.). Also, if I definitively DON"T have it, then I know i don't need to worry about contaminated fryers, lipsticks, etc. After all, I don't outwardly react from those things and if it's just a simple intolerance, then no harm done. But if I don't react outwardly, but do have celiac, then the potential from harm is much greater.
My next step might be a gene test from enterolabs, but I can't decide if it's worth the money. Pros: we would know if my son has the celiac gene, I would know that I have to be SUPER anal about gluten cross contamination, etc. Cons: Cost
Sorry for rambling. If you have any thoughts and opinions on my situation, i'd love to hear them. i guess my basic question now is: what next? How gluten intolerant am i, really?! What do I say to others who don't understand how I can get so sick from gluten but get a negative diagnosis? (See, it's all in your head).