2 1/2 Years Down The Line

[Marz]

Hi there forumers,

It's been a long time since I last posted, and thought I'd add an update to how I'm doing.

I'm still as sensitive to gluten as ever - although my stomach symptoms when I get glutened are generally mild, brain/mental issues are still severe.

I'm now tolerant of soy, I can eat soy-based products without any issues, whereas before I would get severely sore stomach from eating them. Dairy is ok-ish, although if I've just been glutened I'll have problems with it for a while.

Generally I've been doing so very well, and I have had no problems with sticking to a strict diet. I've just moved to New Zealand a few months ago, and the move was a very good one since there are a lot more gluten-free options over here, than back in my home country. Mind you, I hear from my parents back home that the stores are *starting* to stock gluten-free options, so hopefully that continues to improve.

I've found eating gluten-free baked items in cafe's are hit-and-miss however, some stores are OK, others the baked goods are seriously yuk *and* I get hit by gluten-poisoning symptoms, so now I just stay away for sure.

My symptoms nowadays when I get hit :

* Brain fog within an hour or so, to the point that my DH asks if I'm OK I tend to start talking slowly, slur words slightly, can't find things that are right in front of me (Shopping is hilarious in this state), can't think very clearly/fast, get agitated extremely easily.

* Itching skin - between a few hours and 2 days I'll start the severe skin rash, that will last for a week or two depending on how much I was hit. Fortunately it usually is around a small patch of skin.

* Stomach issues - maybe, maybe not. So I don't use this as an indicator anymore of how well I'm following the diet.

* Mental issues - depression, weird nasty thoughts, suicidal thoughts. Not enough to make me worry about myself, just "Oh dear, brain has gone on a bender again" thoughts.

For example, the last month or two I've really been struggling with itchy skin, intense fatigue, speech problems and some mild depression. So I've had to scale back my diet to safe items again until I've figured out what the problem is. Feeling much better this week!

So for those starting out, it's a life-long work-in-progress, but the benefits are so worth it!!

Still haven't convinced my Mom to get tested... My brother has now started getting constant stomach problems, but I'm so tired of sounding like a stuck record - "maybe it's celiac, maybe it's celiac, maybe it's celiac" that I just won't continue anymore..... My Mom was visiting us for a month, and I managed to convince her to try gluten-free pasta and pizza, and she noted she felt a lot better, but she just went straight back to eating normally again. She's in the "Just one slice of bread a day, and I feel fine." camp.

*Sigh*....

[Chaff]

Thanks for posting! Very helpful to hear how people are doing a couple years in. And gives us newly diagnosed folks some hope!