Strange Shift In Symptoms After Starting gluten-free Diet... Still Possible Celiac?

[vegan lisa]

Hi! I'm new here.

Short background: I've been having severe stomach pain in the upper left abdomen for 6-8 months and off and on for years before that. My doc (mis)diagnosed gastritis and put me on nexium, which did help a little. Then I developed the strange diarrhea, foul smelling gas, total brain fog to the point of seriously impacting my family and work. I got a referral to a gastroenterologist who suspected celiac. I had the scope a week and a half ago, and started the gluten free diet at that point.

Immediately I felt better and had normal bowels for 3 days in a row, but had developed reflux and heartburn instead. Now the funny diarrhea is back (milder, and off and on, but still there). The gas is starting to come back, the brain fog has been replaced by dark mood swings. The heartburn and feeling that something is stuck in my throat are highly uncomfortable. The only thing that is not back is the burning/piercing pain in my upper abdomen! (yay!)

I may have had 2 mishaps with cross contamination last week, but it's been 4 days since I ate anything risky. I even had my dear friend over who has celiac, who we routinely have for dinner, and she is fine after eating our fairly simple food.

So am I going to be surprised at my GI appointment when I find out I DON'T have celiac? Because that's what I'm expecting. Except that I don't feel better, so I don't know what to think... I really want to feel better, bottom line. I was hoping eliminating gluten would do that. My friend who has celiac felt better right away, and totally better in 3 days. I don't...

What do you all think?

Thanks for the support!

Lisa

-vegan, mom to daughter with food allergies, so I know how to avoid foods and read labels, wishing I felt well!

[lisa25]

After starting gluten free, I felt a little better. My headaches changed from pounding to more pressure/nausea. It wasn't until I found out I was sensitive to dairy and soy (and eliminated them from my diet) that I actually started to feel a lot better. I was also still having a lot of GI symptoms before getting rid of dairy and soy.

[Korwyn]

Hi lisa,

Similar story. Got better, developed more/new symptoms after going gluten-free. Tested positive for casein IgA, eliminated all dairy, that took care of the gas, D, reflux, vomiting. Still had psych (anxiety, panic attacks, insomnia) and some neuro issues. Eliminated all soy (including soy lecithin) and those began to resolve.