Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Your Fisrt Gluten After Being So Careful


tmbarke

Recommended Posts

tmbarke Apprentice

I did my first no no today - I allowed a coworker to make a pea salad gluten-free for our smorgasboard of comfort foods at work today......they checked with me on the cheese and sour cream.....but not any seasonings or ham (does anyone know about ham steaks and gluten?)

Anyhow - within an hour, I was feeling my neck swell a tad - more of an uncomfortable feeling so I knew it was the salad.

But then I got a strange one! I was a trigger to a bomb! I got so pi$$ed off that no one had a chance! and I felt like I was burning up - my skin was cool to the touch, but I was burning inside like I was in an oven.

My boss just wanted to make sure I hung a notice before I left and it took everything I had NOT to unload on him (and possibly lose my job)! OMG!!!! That is not the normal me before being gluten-free!

I didn't talk to anyone the rest of the day (for safety sake) and when I got home, other things started.

When I went to lay down (out of shame for the irratic attitude, or the loss of being gluten-free) I couldn't sleep and my light churning and cramps started - then nasty gas to follow.

I can't stand to be around myself!

The differences amaze me of before I was gluten-free and after 11 days of ingesting it again.

How different were your gluten-free reactions of being re-glutened.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CGally81 Enthusiast
I did my first no no today - I allowed a coworker to make a pea salad gluten-free for our smorgasboard of comfort foods at work today......they checked with me on the cheese and sour cream.....but not any seasonings or ham (does anyone know about ham steaks and gluten?)

Anyhow - within an hour, I was feeling my neck swell a tad - more of an uncomfortable feeling so I knew it was the salad.

But then I got a strange one! I was a trigger to a bomb! I got so pi$$ed off that no one had a chance! and I felt like I was burning up - my skin was cool to the touch, but I was burning inside like I was in an oven.

My boss just wanted to make sure I hung a notice before I left and it took everything I had NOT to unload on him (and possibly lose my job)! OMG!!!! That is not the normal me before being gluten-free!

I didn't talk to anyone the rest of the day (for safety sake) and when I got home, other things started.

When I went to lay down (out of shame for the irratic attitude, or the loss of being gluten-free) I couldn't sleep and my light churning and cramps started - then nasty gas to follow.

I can't stand to be around myself!

The differences amaze me of before I was gluten-free and after 11 days of ingesting it again.

How different were your gluten-free reactions of being re-glutened.

Having gotten glutened somehow from rotisserie (sp?) chicken from ShopRite last night, I can tell you that within the hour, I felt like I was starting to get very hungry, losing the ability to concentrate, etc. But I didn't get the gastro symptoms. I rushed down and made popcorn and took 10 L-glutamine chewables. It's a day later and today, my hunger, which had been getting better, is just as bad as it was a few weeks ago.

So I didn't get the gastro, but I did get the same type of neurological nonsense as before, though I took the "antidote" to stop it from getting worse. And my hunger is disgustingly high again. That's my symptoms.

My advice, btw, is to buy some L-glutamine and quickly. Keep it around. If you get glutened, eat some immediately. It WILL reduce your symptoms. (btw, some L-glutamine contains gluten! The reason why is because bodybuilders use it mostly, and they're not necessarily Celiac. Look for gluten-free L-glutamine)

DingoGirl Enthusiast

In my experience, the difference was nothing short of astonishing, and not in a good way. :(

Before going gluten-free, I was soooooooooo sick.....but intestinal problems were the least of my concerns (it was the mental angst and physical weakness that really had me down). I had pretty much constant weird bowels for the four or five years prior, and a chronic dull ache in my abdomen - but I didn't really realize that until it went away.

AFTER gluten removal things were TERRIBLE with accidental glutenings, for the first year or two. A tiny crumb had me in ENORMOUS discomfort the next day, with the most painful and stinky diarrhea......a smell I'd never known before (sorry for the graphic info, but in my and many people's experience(s), there is a VERY distinct odor to glutened poop). I had to be near the toilet for half of the next day, after a glutening (my reactions were always the next morning). And I was very agitated, insomniatic - nervous and depressed for a day or two.

As our bodies begin to heal, and villi start to grow back, there can be very violent and sensitive reactions to gluten - this is normal.

It really does get better - at least for me it did.

Hang in there! It really does improve over time. :)

Wolicki Enthusiast

I got accidently glutened last night at a cocktail party. I gobbled a stuffed mushroom that looked like crab and cheese. Just as I swallowed it, I realized there were bread crumbs in it. Duh.. I've had terrible heartburn all day,but thank God that's the only reaction.

My newly diagnosed 9 year old boy was given Red Vines yesterday at school and he didn't think to check his list of safe candy before he ate it. He's only been gluten-free for one week, and I was astonished that he spent the rest of the day with a headache and was throwing up for hours in the early evening. I don't think he will be eating any more candy without checking the list first :(

tmbarke Apprentice

I can relate to the mental of it all - I need to wear a warning label to my coworkers when I feel it has happened again! I have the gurgling in my stomach - can't sleep (it's 1:13am now) - I wish I COULD have a bowel movement (it's been a couple days) - and I've managed to lose the swelling in the neck and the worst of the mood.......now I'm just feeling 'buzzed' like I smoked a joint....and I actually prefer that over the pyscho-jerk-from-hell with an itchy trigger finger. 'Just say anything and you're dead meat!'.......like turets even!

I'm hoping this doesn't affect the gluten free event at Meijers! I'm so looking forward to creating a more simpler task than the 3-1/2 hrs shopping trip last saturday.

Thanks for sharing! When I was told to go gluten free, I didn't exactly understand why except the doc told me to stick to this diet.......bye now - see ya!

Now that I have been gluten free for 11 days - and then experiencing THIS!.......I'm positive I'm never gonna be able to introduce anything back into my life again.....which is ok! But this is the proof I needed......to experience it one time on so little.

I'll stick to making my own food from here on out......no trust on good intentions......but the fact that they were thinking of me was priceless.

ang1e0251 Contributor

I'm glad your improving and hope your shopping trip is fun. When I get the "mood" I give the warning out to anyone who has to spend time with me. Thank goodness I haven't had a bad glutening for awhile now. Also part of my symptoms are fatigue so I can actually sleep through part of my witch alter ego.

tmbarke Apprentice
I'm glad your improving and hope your shopping trip is fun. When I get the "mood" I give the warning out to anyone who has to spend time with me. Thank goodness I haven't had a bad glutening for awhile now. Also part of my symptoms are fatigue so I can actually sleep through part of my witch alter ego.

Shopping trip wasn't exactly what I expected - sampled ginger snaps but they didn't know which aisle I was going to find them in (since I notice they scatter them at Meijers too).

I did however, get a list of the Meijers products that are gluten-free so I stuck to that list plus the mealbox coupons and added mfg coupons for more $$ off my purchase (was able to get 2 jars of classico for 2 bucks! sale 2 for $4.00 - $1.00 off 2 mealbox - and $1.00 off 2 mfg coupon!) So I didn't do too bad there.

It was busy and crowded but not for the gluten-free event. I found the shelves restocked this time tho so I got a Betty Crocker cookie mix gluten-free series...w/ coupon of course.

Sucks thos that Meijer doesn't have fresh ground sausage anymore - and I can't trust the pkg'd ones.

Anyone else have any luck today?

And yes, feeling close to normal again, but got a case of the F-it's! forcing myself thru it tho!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nmlove Contributor
Shopping trip wasn't exactly what I expected - sampled ginger snaps but they didn't know which aisle I was going to find them in (since I notice they scatter them at Meijers too).

I did however, get a list of the Meijers products that are gluten-free so I stuck to that list plus the mealbox coupons and added mfg coupons for more $$ off my purchase (was able to get 2 jars of classico for 2 bucks! sale 2 for $4.00 - $1.00 off 2 mealbox - and $1.00 off 2 mfg coupon!) So I didn't do too bad there.

It was busy and crowded but not for the gluten-free event. I found the shelves restocked this time tho so I got a Betty Crocker cookie mix gluten-free series...w/ coupon of course.

Sucks thos that Meijer doesn't have fresh ground sausage anymore - and I can't trust the pkg'd ones.

Anyone else have any luck today?

And yes, feeling close to normal again, but got a case of the F-it's! forcing myself thru it tho!

Glad you're getting back to your self. I went to Meijer today too. It was a bummer. They had three things to sample: Glutino's pretzel sticks and crackers and some vegetable soup. No coupons whatsoever. I did pick up the list of Meijer brand gluten-free foods. And already there was a mistake. The tator tots are coated in wheat. Oh well. Worth a shot.

tmbarke Apprentice
Glad you're getting back to your self. I went to Meijer today too. It was a bummer. They had three things to sample: Glutino's pretzel sticks and crackers and some vegetable soup. No coupons whatsoever. I did pick up the list of Meijer brand gluten-free foods. And already there was a mistake. The tator tots are coated in wheat. Oh well. Worth a shot.

Good to know! I'll cross that off of my list.......once it dries! Just spilled my coffee all over it!

Man, although I'm pulling thru......I still have the mishaps. Feel stiff and weak after nap....then realized I've only had a bowl of corn chex today.

Time to make something.

MKat Explorer
Good to know! I'll cross that off of my list.......once it dries! Just spilled my coffee all over it!

Man, although I'm pulling thru......I still have the mishaps. Feel stiff and weak after nap....then realized I've only had a bowl of corn chex today.

Time to make something.

I heard one of the Meijer sample ladies today tell someone "I don't even know what gluten is...where do you look for it on the box". YIKES!!! At least they could have trained their sample ladies so they would be somewhat helpful!!

BTW - once gluten how long to people normally have diarrhea??? I have a HARD time recovering from that part of being glutened!!

Mey Marie Explorer
I heard one of the Meijer sample ladies today tell someone "I don't even know what gluten is...where do you look for it on the box". YIKES!!! At least they could have trained their sample ladies so they would be somewhat helpful!!

BTW - once gluten how long to people normally have diarrhea??? I have a HARD time recovering from that part of being glutened!!

It took me about 3 days this last time. Still a little off but Now constipated.... What ever that's about. The three days wasn't as long as I thought it would be. Felt like forever though.

GFinDC Veteran
I was feeling my neck swell a tad - more of an uncomfortable feeling so I knew it was the salad.

I wonder if you have considered Hashimoto's Thyroiditis? Hashi's is an autoimmune reaction against the thyroid that people with celiac sometimes get. The effect can alternate between hyperthyroid and hypothyroid symptoms. Swelling in the throat could be a symptom of Hashi's is why I ask. Plus feeling hyper could be another possible link. Anyhow, it's something to read up on and think about.

After I went gluten-free I was suprised at how strong my reactions to gluten became. I reacted to very small amounts of the stuff after I had been off it for a while.

tmbarke Apprentice

I wonder if you have considered Hashimoto's Thyroiditis? Hashi's is an autoimmune reaction against the thyroid that people with celiac sometimes get. The effect can alternate between hyperthyroid and hypothyroid symptoms. Swelling in the throat could be a symptom of Hashi's is why I ask. Plus feeling hyper could be another possible link. Anyhow, it's something to read up on and think about.

I didn't know anything about it until you mentioned it so I looked it up.

SHOOT!

I suppose there are 2 possibilities now.

When I read up on wheat allergy, anaphylactic was mentioned as a reaction so I thought no further.

My doctor did a swallow test with me during my physical and felt the glands too.

If being gluten free will avoid the attack on my thyroid, then I'm hoping that I can do that first and foremost.

If I have any more reactions knowing I'm gluten free - then I'll schedule the appt with my doctor and discuss this new possibility.

I do see with Hasimoto's where I should be concerned since coma can be a result.

But if I'm taking care of my autoimmune system, then it shouldn't attack my thyroid as mentioned in the article I read.

Thank You for your input - that is definitely something I'm going to keep an eye on.

Do you mention this from experience?

Enthrall me.

haleym Contributor

oh man... this kinda reminds me of how I get when Ive eaten something no-no. Wierd! I get a feeling like Ive swallowed some glass shards, and get spacey, moody and feel overall not well. And fatigued!

Im glad to know that not everyone has gastro sx right away... for me the glass shards feeling seems to come a few hours after the fact.

Good luck with hashi's by the way. I have that and it is a wierd one. The thyroid is not one to be trifled with... if you suspect, get it checked because it will make all the difference!

GFinDC Veteran

Nope, I don't have Hashimoto's at least that I know. I do have a thyroid cyst and a couple thyroid nodules though. There are several people around the board with Hashi's. They say Hashi's can cause your thyroid levels to swing back and forth between too low and too high. I am just a little hypo from thyroid problems. A little goes a long way with the thyroid though. Like HaleyM said, it is something to get checked for. Not everyone with celiac gets Hashimoto's. My hypo symptoms were joints getting sore, I didn't have any energy, couldn't sleep well, got lots of brain fog, digestion was bad. Some similar symptoms to gluten.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.