Newbie Experience; Advice And Thoughts Appreciated

[ThisIsMyUserName]

So I'm new to the gluten-free world, and hoping my life becomes less of a pain (and vomit!) filled slog. I finished the diagnostics a few weeks ago, after which my GI doctor informed me that I don't have celiac (and sorry if this is a celiac-only board, but I haven't found a similar place to talk about related disorders, and thought you all might be willing to engage me) but I do have "severe non-celiac gluten intolerance" and I need to go completely gluten free for the rest of my life.

 

Basically, I have felt awful for nearly a decade; constant migraines, tired, etc.. A few months ago, I added to this episodes (first every few weeks, then almost every day) of throwing up everything I ate and feeling "poisoned" and just awful. I went to the top-rated GI doc in my area, and he told me I was very likely celiac, but the blood test and endoscopy/biopsy came back negative. He is sure that I have something celiac-like, and have to go off gluten so I have done so. On the whole I am feeling much better, but:

 

1) This gluten free thing is HARD! I went three days totally gluten free, then had cheerios (thinking it was oats and oats were fine. I've read a lot since and now have chex and gluten-free oatmeal) and spent two days throwing up and feeling awful. Then I went a few days, but ate at a friend's house, who pointed out the gluten-free dishes; I don't know if she had it wrong, or if there was cross-contamination, or what, but, yep, two days of throwing up and feeling awful. Four more days slowly feeling better, then I had a rice salad that was cooked in a pot my wife had previously used for pasta, and two days of awful. It's been two days since, and I am mostly better.

2) At first I just checked ingredients. Then I only ate things stating gluten-free. I'm coming around to going whole hog and keeping separate dishes, etc.

3) I'm still not 100% sure it's gluten. I definitely feel better, and the cheerios incident was pretty stark, but I'm a skeptic by nature, so I wonder if there isn't something else. It does seem like my story aligns with those I'm reading.

4) I was feeling really deprived at first. Before the diagnosis, I ate very healthy (no sugar whatsoever, mostly things like oatmeal, fruits/veggies, whole grains, etc.), so adding the whole no-gluten on top was hard. I figured I would relax my healthy eating for a little to compensate: having the occasional gluten-free chocolate bar or slurpee or whatever has made me feel more balanced. I do keep a close eye on my weight, and haven't gained any yet, but I'm aware this might be a long-term issue. In any case, I lost a bunch of weight during the bouts of vomiting, so there's some wiggle room.

5) I tried a bunch of gluten-free things (pretzels, bread, etc.). They didn't generally do it for me. I'm really hoping for a long-term healthy (low-cal) bread replacement, but I haven't found it yet.

6) I read a few places that what I have is sort of a pre-celiac, and that going gluten-free can avoid me getting full blown celiac. That's a lot of motivation. Of course, I've also read that non-celiac gluten intolerance doesn't exist, but my doctor was pretty sure.

 

Anyway, this is turning out to be much more of a journey than I realized. Assuming it is gluten (see #3) I'll stick with it, especially since the inability to keep food down or feel even remotely ok is a big deal. I'm also really, really, REALLY hoping that the migraines and fatigue go away. It's a lot not to feel good for a decade.

 

Anyway, that's me. Ideas, thoughts, advice, all appreciated. I am a big believer in the wisdom of the experienced, so if you're willing to put up with me, I would greatly appreciate it!

[bartfull]

Hi and welcome!

So what tests did your doctor do? It might help if you have or can get the results and post them here. Lots of doctors don't do all the tests that are required to really give a diagnosis.

 

But even if he did all the tests and you ARE non-celiac gluten intolerant, you are MORE than welcome here! Lots of our members are in the same boat.

 

The first thing you should do is go to the Newbie 101 thread at the top of the coping section and read it. It would help to take notes and make sure to click on all the links provided too. You may find yourself feeling pretty crummy for a few weeks. Gluten withdrawal can lead to headaches, mood swings, ravenous hunger and an overall feeling of "something's wrong" - the shakes, a dreamlike feeling, whatever. Just know that this is normal and will go away in a week or three.

 

As far as a LOW CAL bread, forget it. gluten-free substitutes all tend to be high in calories and low in nutrition. Stick to whole foods at first - meats, rice/potatoes, veggies and fruit, and nuts. The newbie thread will help you learn to avoid cross-contamination and also help you learn to read labels.

 

Then come on back and ask lots of questions. We're here to help.

[ThisIsMyUserName]

Thanks! I'm a little leery about posting the tests on the net (it's not you, it's me!), but he did the blood test, a stool test to check for other things, and an endoscopy with biopsy, all of which came back saying I have nothing (except for heartburn, which, frankly, I could have told you!). If there's something specific I should look for, I'd appreciate the heads-up. I did a ton of reading (including the newbie section and "Gluten-Free For Dummies" and a bunch of science papers and so on), but my feeling is that there is wisdom that comes with experience, so any thoughts on whether it sounds like gluten to you guys and whether there is hope for my migraines or any specifc tips or ideas are all appreciated. Thanks for welcoming me, hopefully I'll be able to give back when I'm an old hand!

[bartfull]

OK, these are the blood tests the doctor should have done:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

AGA IgA and AGA IgG (older less reliable tests)

 

There are some folks here who only tested positive on one of these, but they do indeed have celiac.

 

Also some folks are IGA deficient which means the tests are likely to be false negative.

 

Migraines are definitely a possible symptom of celiac. There are 300(!) potential symptoms. And yet some folks have NO symptoms and only discover they have it because they have good doctors who realize it is very common and so they do routine testing.

 

The doctor should have taken between six and eight samples when he did the biopsy. Some doctors only take one or two and they miss the damaged parts.