Elimination diet...confused

[mama.liz07]

Hi!  I need some opinions!!!  My son has celiac disease and I've been tested a couple of times, both came back negative.  My dr recommended I go off gluten for a month and then get back on to see what happens, so about a month ago I did that.  I did start feeling better.  Then, on Friday, I ate gluten.  Two whole wheat waffles at breakfast, two pieces of whole wheat bread at lunch, and a bowl of whole wheat pasta at dinner.  I felt fine all day friday and slept fine friday night.  I didn't eat any gluten on Saturday.  Woke up saturday feeling fine, but I was a bit constipated.  As the day progressed I did start feeling a bit dizzy, but otherwise was fine.  Then, I ate dinner (nothing unusual, all gluten-free) and right after eating dinner I felt really bad.  My stomach bloated (I'm a skinny person and I looked pregnant), I was really dizzy, very fatigued, and got a bad headache.  Then, that night, I had a lot of trouble sleeping.  I have restless legs anyway, but it's usually mild...but that night it was awful.  My arms and legs felt so weird and even my toes were tingling some and such.  When I finally woke up the next morning, I felt better.  Tired, but better, like I'd been reset.  I'm still a little off, but not as bad as saturday night.

So, could that have been gluten?  Seems so odd that I would eat gluten all day friday and pretty much feel fine until saturday evening when suddenly, seemingly randomly, I felt like a truck hit me.  

Not sure what I should do next...

Thanks!

And like right now....I felt okay when I woke up, but then I just ate (nothing unusual, no gluten) and now I feel exhausted and slightly nauseated.  So tired.  But the food was stuff I've eaten many times.  Could this still be gluten related from friday?  

[Fundog]

1 hour ago, mama.liz07 said:

Hi!  I need some opinions!!!  My son has celiac disease and I've been tested a couple of times, both came back negative.  My dr recommended I go off gluten for a month and then get back on to see what happens, so about a month ago I did that.  I did start feeling better.  Then, on Friday, I ate gluten.  Two whole wheat waffles at breakfast, two pieces of whole wheat bread at lunch, and a bowl of whole wheat pasta at dinner.  I felt fine all day friday and slept fine friday night.  I didn't eat any gluten on Saturday.  Woke up saturday feeling fine, but I was a bit constipated.  As the day progressed I did start feeling a bit dizzy, but otherwise was fine.  Then, I ate dinner (nothing unusual, all gluten-free) and right after eating dinner I felt really bad.  My stomach bloated (I'm a skinny person and I looked pregnant), I was really dizzy, very fatigued, and got a bad headache.  Then, that night, I had a lot of trouble sleeping.  I have restless legs anyway, but it's usually mild...but that night it was awful.  My arms and legs felt so weird and even my toes were tingling some and such.  When I finally woke up the next morning, I felt better.  Tired, but better, like I'd been reset.  I'm still a little off, but not as bad as saturday night.

So, could that have been gluten?  Seems so odd that I would eat gluten all day friday and pretty much feel fine until saturday evening when suddenly, seemingly randomly, I felt like a truck hit me.  

Not sure what I should do next...

Thanks!

And like right now....I felt okay when I woke up, but then I just ate (nothing unusual, no gluten) and now I feel exhausted and slightly nauseated.  So tired.  But the food was stuff I've eaten many times.  Could this still be gluten related from friday?  

That was a lot of bread/carbs in one day.   Do you normally eat that much bread/pasta/carbs in one day?  I have chronic loose stools, but if I carbo-load like that I will firm up quite a bit.  And the excessive sugars in the carbs will make feel icky and off balance.   Or maybe you were just having a little tummy bug at the same time?  What I would do is go off gluten again for two more weeks, then try again, but in a much smaller portion-- a cereal bar, perhaps.  And then see.   

[mama.liz07]

Hmm. Yeah, I guess I do usually eat that many carbs in one day.  I mean, I don't usually have two waffles (they were my other son's blueberry toaster waffles so they're small).  But I try to eat something from each food group for each meal, so that ends up being a grain for each meal.  But, yeah, that was a lot of wheat...we usually do other grains too like rice and quinoa and such too.  Lunch was a sandwhich, so that's why there were two pieces of bread, and dinner was spaghetti, hence the pasta.  Not sure.  I like the idea of doing it again.  

Still curious if it is even possible that it could have been the gluten since there was such a delay...

[Fundog]

Well everyone is different, so everyone has different reactions and in different levels of severity.  I can tell you how the elimination challenge worked for me, and confirmed my suspicion of a gluten sensitivity:   I did the challenge for three weeks, officially.  Now my primary problem is major horrible skin-- my dermatologist said it was eczema, but I've never seen eczema look like this-- anyway, I had gone one full week avoiding wheat and gluten.  I offered some pretzels to my grand nephew, and  without thinking, I popped one in my own mouth.  I said "oops" to myself, but since it was so small and I really didn't expect to get a conclusive result anyway, I promptly forgot about it.  The next day I suddenly broke out in hives all over, even on top of the lesions I already had!  I went crazy trying to figure out what I had eaten to cause such a severe reaction.  Remember, I had forgotten about the pretzel, lol. In addition, I was taking an antibiotic for cellulitis at that time, and despite assurances that it was gluten free, I discontinued taking it, just in case I was allergic to the antibiotic.  So I continued the elimination for two more weeks, and on the day of the challenge I ate a bowl of spaghetti.  Within six hours I was once again covered in hives, and extremely miserable.  At the time, this challenge was only to rule out a wheat allergy-- and given the hives, I may indeed be allergic to wheat specifically.  But later I noticed that even consuming barley, though I don't break out, I get "itchy and twitchy."  Constantly scratching in random places and can't sit still.  It took awhile, but I finally realized I was also reacting to barley as well as wheat.  So now I've committed myself to going entirely gluten free.  It's just not worth the trouble.  Even my family is behind me-- they are tired of watching me itch and scratch constantly, and they go to heroic measures to prevent me from eating gluten, bless their hearts!  I guess I'm "lucky" to have an obvious symptom like horrible skin, instead of something more vague, like feeling tired.  Just a feeling of general malaise is a lot more difficult to pin down.  Good luck with your challenge, I hope you get some answers!

[cyclinglady]

Celiac Disease is an autoimmune disorder (damages the small intestine) that "flares up" when exposed to gluten.  Like lupus, celiac disease can cause symptoms within a few hours or even days.  It can take days, weeks or months for that flare-up to calm down.  So, yes, it possible to not react for days.  

What tests were done for celiac disease?  Was it the complete celiac disease panel that includes both the TTG and DGP versions?  I ask because I tested positive on only the DGP IGA and not the TGG.  The TTGS screening test is good, but does not catch all celiacs.  

As a first-degree relative, you should be tested every few years (even if symptom free) as celiac disease can develop at any time.  

[mama.liz07]

No, it wasn't a complete panel...just a TTG.  That's really frustrating.  Good to know though, thanks!!  

I still feel really fatigued...hope it calms down faster than months :-(  We've thought through everything I did Friday and Saturday and simply can't think of anything else that could have caused such a reaction.  Nothing else changed in my diet and no one is sick.  I was feeling better off gluten and now I feel like my old, worn-out self again.   For me personally, I don't think I even need testing to convince me that I shouldn't eat gluten.  We already have to be super careful with cross contamination with my son, it wouldn't be hard to just join in.  

Thanks for your help!!!