I Thought I Had My Answer But Still Not So Sure

[birdie22]

I've posted here several times about trying to determine the cause of my symptoms that started ~18mo ago (bloating, distention, pain at my breastbone, canker sores, heartburn, headaches, fatigue, nausea, leg aches, etc). My celiac panel was negative and various other blood and diagnostic tests have been normal. My PCP has not outright said IBS, but I'm sure that's what she wrote in my chart. I went gluten-free as a trial in Sept and then committed to gluten-free back in November. Aside from a few intentional glutenings to see my reaction I have been strictly gluten-free since then. I've been keeping a food and symptom log. On a whole things have gotten slightly better, but I keep tallies of how many days in a month I experience a certain symptom. Some have improved a bit, some have stayed the same, none have gone away completely. I've added D3, Magnesium, and B12 to my daily routine.

So, since I've had this extended period of being gluten-free I thought it might be time to trial gluten and see what happens. Last night I had 2 slices wheat bread with a bit of peanut butter (I eat a lot of nuts and nut butters so I know these are safe and I can't just eat plain bread). Within 30min I felt bloated and the pain right at the base of my breast bone where my diaphragm is. I thought aha! It's the wheat! I am on the right track here! So then today my office had bagels for a breakfast meeting that I abstained from and at lunch time thought, hmmm, maybe I should see what happens with a bagel. So, I ate 1/2 an onion bagel, plain. I felt a bit blah, but who wouldn't with all that carb and no other nutrients. So I ate the other 1/2 of it. Again, blah, but nothing to report home about.

So, now I'm back to doubting whether gluten-free is the correct solution for me. Ugh, I hate this. Not even sure what I'm asking, guess I just needed to vent.

[ravenwoodglass]

You may want to consider an actual gluten challenge. Eat something like Cream of Wheat or Triscuits or add wheat germ to cereal 3 times a day for a week. Gluten reactions can be delayed so you want to give it a full week unless you react sooner.

[Kamma]

I second Ravenwood.

When I did my gluten challenge, some symptoms presented right away, others did't. But by two weeks in, I was flat on my back with a spinning head, no energy, lethargy, gas and fogged out brain.

I know that I get frustrated with the lack of improvement in my symptoms - sometimes it feels like I'm just not healing fast enough or the way I think I should be. Then I doubt my diagnosis and sneaky thoughts come in that it must be something else. But I know compared to where I was I see a huge improvement so I stay the course.

Perhaps you're frustrated with your progress. Stay the course if you see improvement. Give yourself some more time and engender much patience to deal with the frustration. Our minds say, hurry up, hurry up! and our bodies just plod along, healing on their own time.

[birdie22]

You are both right. I really should do a more extended challenge. I guess it's a matter of finding the "right" time to do it. If I'm going to feel like junk for a week or probably more I need to do it when I can afford to be less than productive at work and/or home (I have 2 small children). Since I've had a gluten meal once a day for the last 2 days I might as well continue with it now instead of stopping and starting again some other time. It shouldn't be hard to add gluten to a few more meals.

I do still feel kind of crummy...less energy, foggyish. And, I just discovered a few minutes ago the start of a tiny canker sore on my lower lip. I had been getting them monthly but haven't had one since Feb 26 (so almost 6wks). Correlation???? Hmmm....

[birdie22]

I also noticed that I'm starving. Like STARVING. I woke up hungry. Now, 3hrs after my gluten-free breakfast I'm starving again. Like I'm almost nauseated I'm so hungry. I haven't had this feeling since being full on gluten. Back then I was hungry 24-7. Since being gluten-free I've been amazed at how satiated I feel between meals.

[tom]

.... Like I'm almost nauseated I'm so hungry.

...

Whoa! I've wondered whether others feel this.

I call it "so hungry I could puke", tho that really makes no sense.

[Kamma]

Yes! I remember that starving feeling. Wow. I forgot about it and like you, feel totally full at the end of each meal.

Hhhhmmm....canker sore, starving, foggish....seems like you're symptoms are picking up!

Keep us posted on how it continues.

[birdie22]

Whoa! I've wondered whether others feel this.

I call it "so hungry I could puke", tho that really makes no sense.

Yup. Exactly!

No gluten meals today yet but hubby is grocery shopping and he's getting me cream of wheat. Yuck. Still starving and now my stomach is rumbling (not growling and not gurgling but the loud rumble). Fun.

[sreese68]

On gluten, I get hypoglycemic and STARVING. Shakes start a couple of hours after eating until I eat again. (The time interval shortened to 2 hours after being gluten-free for awhile. Wasn't this bad before going gluten-free.) Off gluten, I can go for much, much longer before I get shaky, irritable, etc. Write all your symptoms down so you don't forget, but you may want to go another few days until you're 100% sure. Not a diet to continue if you aren't sure!

[birdie22]

Had 2 more slices of wheat bread last night and for lunch today a nice serving of cream of wheat. I ate it by itself so as to have an empty stomach and not "dilute" it with anything. I felt some nausea afterwards but no abdominal discomfort. Of course I'm starving 1hr later. I woke up today with a headache behind my right eye and down the base of skull towards my neck (which used to happen frequently) and my BM today was voluminous, kind of shredded looking (solid but flakey if that makes sense) w/ undigested food, and very smelly. Sorry TMI. Since my reactions arent debilitating I'll keep with my daily cream of wheat and see what happens over the next couple of days.

[Kamma]

You know, as much as this is hard going for you, I am totally glad that you are 'blogging' about it. It acts as both a written record for you and a reminder for me of 'what it used to be like'. When you start getting healthier, you forget some of the unhealthier stuff that was going on. Reading what you are going through is kind of like, "Oh, yeah! I remember that~! Thank god I don't feel it anymore!"

So thanks for writing it all down.

How is your energy level? Feeling lethargic, fatigued? Any mood swings?

How long are you going to consume the gluten for?

Please take care of yourself!

[birdie22]

Thanks Kamma. Treated myself to a nice gluten-free chipotle last for dinner cause I couldnt bring myself to do more gluten. I did have a handful of wheat thins for a late day snack and had more nausea. At bedtime I had to take phazyme because I had gas pain but no gas to pass. This morning I had a hard boiled egg and was nauseated for an hour after. I'm going to have a nice gluten-free Easter brunch so I can enjoy it. I'll probably do cream of wheat tonight. Not sure how much longer I'll keep this up.

My mood is ok and no big fatigue yet. I did have a very very restless sleep last night and that hasn't happened in a long time either. We'll see what the next few days has in store.

[birdie22]

Had another bowl of cream of wheat this afternoon. No immediate effects. Ten decided about 1hr later to indulge in some cheddar chex mix because I love that stuff and I might as well enjoy it while back on gluten. About 45 min later I feel really bloated and a tad bit dizzy. So weird that the cream of wheat has gone down fine two days now but felt bad with other things. Is that odd?

[kareng]

Had another bowl of cream of wheat this afternoon. No immediate effects. Ten decided about 1hr later to indulge in some cheddar chex mix because I love that stuff and I might as well enjoy it while back on gluten. About 45 min later I feel really bloated and a tad bit dizzy. So weird that the cream of wheat has gone down fine two days now but felt bad with other things. Is that odd?

It can take awhile to make you feel bad. It has to get into the small intestine and get noticed to start the antibodies.

[Kamma]

The cream of Wheat is sending the signal and your body gets ready to ambush the next wave of gluten invaders.

Okay.

We're on day three and so far you are experiencing:

- nausea

- bloat

- pain under your breast bone

- canker sore

- fogged out

- restless sleep

- starving

- dizzy (Is it dizzy or vertigo? I always make a distinction now after having endured the damn vertigo almost non-stop for two years)

- gas pains with no gas

Any other symptoms I'm overlooking?

[birdie22]

The cream of Wheat is sending the signal and your body gets ready to ambush the next wave of gluten invaders.

Okay.

We're on day three and so far you are experiencing:

- nausea

- bloat

- pain under your breast bone

- canker sore

- fogged out

- restless sleep

- starving

- dizzy (Is it dizzy or vertigo? I always make a distinction now after having endured the damn vertigo almost non-stop for two years)

- gas pains with no gas

Any other symptoms I'm overlooking?

Kamma...thanks for the list! Yep, that about sums it up. Oh, add heartburn to that list. Although I've had this almost daily both on gluten and off it. Even after all those months gluten-free, the heartburn was still present more often than not though quite mild. Other than the canker sore, nothing is consistent or lasting. The others come and go in no discernible pattern. I'm also surprised I haven't had a daily headache as that was one of the things that bothered me most prior to trying gluten-free (and continued while gluten-free but to a lesser extent).

I've had at least one gluten item since last Wednesday with the exception of yesterday (Monday). Today I had cream of wheat for breakfast. Very minor nausea immediately followed but resolved w/in an hour. Had a lovely lunch of udon noodle stir fry. I was intentional in getting veggies, tofu, and veggie broth (gluten-free) so that the only new variable was the wheat in the udon noodles (I've had the other things w/out issue). No bloating or nausea, but my head feels loopy now (~1.5hr after eating). I would say dizzy and not vertigo (no room spinning). More a fuzzy, loopy, buzzed feeling. I don't recall having this feeling once I went gluten-free.

So, I have had a bit of gluten daily for the past 7 days. The results aren't earth shattering. I had actually hoped for more severe indicators that it was problematic (pain after each gluten meal, greater changes to my poop, etc). But they do all add up don't they?!

ETA: that now 2hrs later I'm still buzzed/loopy feeling and I sense it is progressing into a headache. I took a motrin. I really just want to put my head down on my desk and cat nap.

[Takala]

I'm getting queasy every time I read this thread, if that's any consolation.

If you'd walk around in my long term damaged body for 5 minutes, you'd be taking a flamethrower to your pantry in the next seven.

[Kamma]

Yup, we're living vicariously through Birdie here. Queasy feelings and all!

So I'm going to add three more to the list:

One week in:

- headache

- lethargy (seems like that is beginning)

- heartburn

- nausea

- bloat

- pain under your breast bone

- canker sore

- fogged out

- restless sleep

- starving

- dizzy

- gas pains with no gas

If you keep eating gluten, maybe the week coming up will see the changes in the bowel movements and/or the stomach pains. Perhaps right now you are just at the point where your antibodies are starting to attack and destroy. The cumulative effect will begin to be more pronounced.

Gosh, you are a brave soul!

[birdie22]

Gee so glad you are all so "taken" by my posts lol! The dizzy buzzed feeling finally stopped at about 5pm thankfully. While I was feeling junky I ate 3 thin mints. I bought them before going gluten-free and they werent delivered until after so I hadn't had any yet and they are my favorite. I figure this is my final fairwell to gluten tour and I might as well eat my favorites one last time. Had a gluten-free dinner of tacos minus shell and felt bloated after.

So should I call it quits or stick with it a few more days?

[Kamma]

"Final farewell to gluten tour".... :lol:

Should you quit? Well, do you feel sure that gluten causes a problem for you? From where I sit and have been reading, the more you eat it, the more symptoms keep cropping up. This is the true validation.

If you are sure, then yes, quit. Based on the fact that you are reacting to it and could potentially be doing yourself more damage the more you eat it, please do stop.

Sing your last song of

- headache

- lethargy

- heartburn

- nausea

- bloat

- pain under your breast bone

- canker sore

- fogged out

- restless sleep

- starving

- dizzy

- gas pains with no gas

and throw the gluten away.

[birdie22]

I ditched the gluten after April 10th. I savored those 3 thin mints and 1/2 a beer and started the next day gluten-free. While I wasn't feeling dire, I wasn't feeling great and it seemed like every day was something that was bothersome. So, day 3 now of being back on the gluten-free bandwagon and things are getting better. The canker sore which I've had for 1 week now is starting to heal (it was increasing in size each day it seemed) and so far today I'm feeling good. Yesterday I had another afternoon of foggy/buzzed feeling and last night at about 2am (while awake with my 2yo) I could here my stomach making all sorts of noise. It didn't help that I had to have lunch at a work function with a buffet (no way to request gluten-free ahead of time) and hoped that I picked safe items...plain baked chicken leg, roasted mixed veggies, and garden salad with italian (oil based) dressing. I had bloating after and that dizzy feeling but no way to know if it was lunch or remnants from the prior week's gluten binge.

Clearly something I eat is bugging me and gluten seems the likely culprit.