Continued Symptoms

[WhimsiKay]

I swear I was doing better. I went even a month without symptoms, and then all of a sudden, boom, I'm dying every night again.

A brief recap:

I'm not officially diagnosed. I have (had) no insurance so I went to a walk-in for all the usual tests -- still paying those off, let me tell you. Everything, including the gluten antibody blood test, came back negative. Before doing an endoscopy, which the doc said would cost about $2000 alone, she put me on a gluten-free diet and had me check back in two weeks. When I showed improvement, she basically said, "Congrats, you're gluten-intolerant, have a nice day". She was, in all fairness, trying to save me money and time spent being sick, but now I wonder if we missed something.

I've only been on the diet since late April, give or take. I started showing immediate improvement, followed by definite outbreaks as I accidentally glutened myself with various things, and went most of June with no issues at all! I still eat dairy, but not tons of it, and I also eat potatoes, tomatoes, corn, etc. The usual things that may also cause issues, but I don't experience issues with them at any given point. There's no pattern, for example, to the food diary. I don't think it's any of those causing the problem else I'd be sick all the time.

Three days ago -- the night before my anniversary! -- I got sick so bad that I was up all night. I literally got a single hour of sleep before I had to go to work. The only thing I could think of that made me sick was the new coffee I had just opened up that day -- an organic blend. Nothing else I had really was any different at all. I've only just recently picked up coffee again, though, as I figured hey, all my other foodie pleasures are gone.

Then the following night -- my anniversary night, let me remind you ^^; -- I was sick all throughout Kung Fu Panda and had to lie down when I got home. I did have some nachos from a Mexican place, but I'd had them before and was perfectly fine. That said, I recognize that it was a risk to take,a nd I figured maybe I just got caught with some CC.

But today, I didn't do anything different than I normally do. I got a plate of fries from my daily lunchtime place, and I had a bowl of gluten-free puffed corn cereal with bananas in it. Yet here I am, dying again.

Is it possible that the coffee is triggering this? I had different coffee this morning, and maybe my system just isn't liking coffee in general? And if it's that, then why do the symptoms hold off until night? Every gluten- or stomach-problem I've had related to this sickness has started at night, after 5pm, and that's weird to me.

Starting tomorrow, I'm going to quit coffee entirely, mind my Ps and Qs and not eat out at all, and see if maybe I still get sick. If I do, I'm going to be very worried: is it possible, really,t hat I have some other stomach problem that has gone un-diagnosed? Is it Crohn's? The doctor seemed pretty sure that it wasn't, but then, it's so hard for me to be sure because I don't have tests, nothing to back it up. Is something really the matter with me that isn't Celiac?

I haven't done the gene test, and I can't until I pay off the first round of med bills and get some money stored up in my insurance account, but I really should do that. Thing is, my family is almost all northern European, so I'm pretty sure I've at least got the gene. Not sure what it'll tell me, otherwise!

Anyone else have this kind of difficulty?

[pele]

You are not alone. Many people experience immediate relief upon going gluten-free then begin to experience more distress. It takes time to heal. I, too, experience digestive problems at night which cause insomnia, but it's way better than it used to be!

It sounds to me like you are still learning the finer points of staying gluten free.

Coffee blends or flavored coffee may conatin barley. Did you read the ingredients?

Restaurant french fries or nacho chips may be fried in oil in which floured items are fried, and thus be FULL of gluten.

I would recommend eating only plain, unprocessed foods that you prepare yourself, at least for a while. Keeping it simple will help you heal and help you identify problem foods. Eat plain fruits, vegetables, chicken, fish. Cook a big pot of brown rice to use over the next 2-3 days. Always take safe food with you when you go out so you will not be tempted to buy something unsafe. This'll be cheaper, too (Yay!)

You may lactose intolerant, so try cutting out dairy for a while. Most people can add dairy back in after a few months.

Good luck. I hope things improve for you.

[Rachel--24]

Caffiene is very irritating to the gut....same with alcohol. I would avoid those things right now.

[tom]

That 'after 5pm' part is so hard to figure.

I don't suppose there's anything you typically ingest right when you get home is there?

Is something environmental possible?

If you actually ARE celiac, it's common to need to be dairy-free for 6mos or so.

It's good you're doing a food diary and it may yet show some correlation. Some ppl find things that affect them 2 days or 3 days afterwards - it's not same day or next day for everyone.

Good luck figuring this out.

[aikiducky]

Also keep in mind that if you get "glutened" the reaction isn't necessarily over in one day. In the beginning I used to feel the effects of one glutening for about three weeks.

Pauliina

[WhimsiKay]

Thanks very much for the advice and good thoughts.

In answer to the after 5 questions, I rarely have anything after work except dinner, and in most cases, it's something fairly simple and non-offensive. I'm still getting used to be being able to eat again, and since night was always my worst time, it's been a mental trial to push through and actually eat anything for dinner. I'm doing much better, but sure enough, all my bad symptoms start after 5.

Weird, isn't it?