Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

I Thought I Had My Answer But Still Not So Sure


  • Please log in to reply

20 replies to this topic

#1 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 05 April 2012 - 01:20 PM

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.
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

Celiac.com Sponsor:

#2 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,747 posts
 

Posted 05 April 2012 - 03:03 PM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 05 April 2012 - 05:53 PM

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.
  • 0

#4 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 06 April 2012 - 05:53 AM

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....
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#5 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 06 April 2012 - 05:56 AM

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.
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#6 tom

 
tom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,930 posts
 

Posted 06 April 2012 - 01:02 PM

.... 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.
  • 0
>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#7 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 06 April 2012 - 01:56 PM

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. :)
  • 0

#8 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 06 April 2012 - 03:17 PM

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.
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#9 sreese68

 
sreese68

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 272 posts
 

Posted 06 April 2012 - 03:52 PM

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!
  • 0
Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11

#10 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 07 April 2012 - 09:52 AM

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.
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#11 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 07 April 2012 - 11:50 AM

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!
  • 0

#12 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 08 April 2012 - 05:49 AM

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.
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#13 birdie22

 
birdie22

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 08 April 2012 - 10:58 AM

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?
  • 0
Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#14 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,148 posts
 

Posted 08 April 2012 - 11:48 AM

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.
  • 0

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 


#15 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 08 April 2012 - 03:41 PM

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?
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: