Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Feel Like I've Been Glutened


squirmingitch

Recommended Posts

squirmingitch Veteran

Sitting here with such heavy brain fog It takes all I have to concentrate on writing this. Sitting still in this chair but feel like I'm reeling around. DH is itching & blistering again.

The story:

I went low sal & everything went amazingly well.That was about April 1st. All my dh was clearing right up. Only had a few places left which hadn't fully healed yet but they had a little scab on them. They weren't itching. I slept for the last 10 days w/o waking in the night itching. Life was getting really good. I had not eaten any Quinoa since going low sal. Then on April 17th, 20th & 22nd I ate Quinoa. Last week I began to get a little itchier, then over the w/e I got a little more itchy & healing places began to get inflamed. I suspected the Quinoa. These are the only things I have added since going low sal --- Quinoa, Chobani yogurt, cheddar cheese from a local dairy where I get my milk. I almost didn't have the Quinoa yesterday morning as I was also starting to feel a little brain fog & had experienced a few sharp quick pains in my abdomen. But I thought to myself: Self, if it's the Quinoa then let's just get it on & find out for sure otherwise you'll never know. I woke in the middle of the night with my scalp, arms & legs burning & itching like mad. Got up this morning itching & have had over the last several days numerous new blisters & old places flaring. My neck is "bumpy" again whereas it had gone down to smooth. I woke with screaming hunger & am back to constant hunger, feeling weak, unsteady gait or feeling like I'm moving even when sitting still, fog brain to the max., & my temper is right on the edge; I could scream at someone in a heartbeat. And I've had short light spurts of that 'heart pounding" feeling.

Okay, so I examine the possibilities --- if I've gotten too much iodine by adding the yogurt or the cheese then that only makes the dh flare but not all this other feeling.

Do i think the Quinoa is cc'd? It's Ancient Harvest Quinoa & I called them after the whole Rabbinical Council thing & am satisfied their Quinoa is not cc'd nor will it be. Further, if their Quinoa was cc'd then almost the entire celiac community would be reacting by now & we would all hear about it. The fact that we haven't had people on this board going crazy b/c of cc of the Quinoa is evidence enough that it is not a problem.

That leaves me with something (I'm almost positive it was) Skylark who was explaining something about your body mistaking another grain for wheat. I can't find the thread --- it wasn't a thread originally about that topic & my mind is too foggy now to find it -- I don't even have a clue where to look for it or what search words to put in. I feel very strongly this is what happened to me with the Quinoa. But given my present state of mind....

I would appreciate your feedback.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Stop eating quinoa. There are quite a few people who have problems with it. Luckily it isn't a commonly used food so it should be easy to avoid.

Link to comment
Share on other sites
itchy Rookie

Hi squirmingitch

I suppose there is a possibility that your quinoa was contaminated or otherwise caused a reaction, but I suspect not.

After having had several 'relapses' over the past few months, which I blamed on various things, I've come to the conclusion that these relapses are more like caused by internal factors, not by things I ingest. I've readded to my diet all the things I without any new reactions.

Personally, when they happen I examine all my intake to see if there is a problem, but I've become very skeptical about assigning blame to one thing or another.

I'm happy that I'm on an overall improving trend, but remain frustrated that it is so slow with some steps back.

I've just gone through a rapid healing trend, and if it holds my DH will be invisible in a couple of days. But I expect it back.

that's my experience, but we're all different

Best wishes for a speedy return to healing.

Link to comment
Share on other sites
dani nero Community Regular

I remember that post, a lady stated that she added her first food back that made her sick, and it was quinoa!

I have not reacted badly for a long time, but I do feel your pain and frustration! I'm really sorry you're not feeling well :-(

I don't think though that you should rule out sals as the culprit though.. When I was reacting to them I was very moody as well! What other symptoms are you experiencing other than the hunger, fog, DH, and mood-swings? Any C or D? Are you swollen?

Link to comment
Share on other sites
squirmingitch Veteran

Prickly, I am not eating anymore Quinoa. Lesson learned!smile.gif I DO wonder if this may be a temp. thing though & maybe I can have it back somewhere down the road 6, 8 mos. or a year down the road.

itchy, You didn't specify if you have the whole body having been glutened feeling or if it's only the dh flaring. Can you clarify please?

Let's see Dani --- hunger, fatigue, anger/borderline, HEAVY brain fog, dizzy, achy, flu-ish sort of feeling, & some occasional sharp abdominal pains -- short lived each time. No C or D but a couple times I hung close to the bathroom thinking I might have to run to it quickly. Some gas whereas I had been having none. No swelling except for dh skin spots but no belly swelling.

Link to comment
Share on other sites
dani nero Community Regular

Prickly, I am not eating anymore Quinoa. Lesson learned!smile.gif I DO wonder if this may be a temp. thing though & maybe I can have it back somewhere down the road 6, 8 mos. or a year down the road.

itchy, You didn't specify if you have the whole body having been glutened feeling or if it's only the dh flaring. Can you clarify please?

Let's see Dani --- hunger, fatigue, anger/borderline, HEAVY brain fog, dizzy, achy, flu-ish sort of feeling, & some occasional sharp abdominal pains -- short lived each time. No C or D but a couple times I hung close to the bathroom thinking I might have to run to it quickly. Some gas whereas I had been having none. No swelling except for dh skin spots but no belly swelling.

That sounds terrible Squirming! I pray that you'll get well faster, and hopefully you will.. specifically since your body isn't swollen. It's probable that reacting to quinoa isn't the same as reacting to gluten. Get well, rest a lot, and take some time off watching guilty pleasure shows.. Something that is fun but doesn't require any brain-work.. Mine was Judge Judy at some point *blush* >.>

Go on long walk in a very quiet and nature-rich place that contains a lot of eye candy to calm your moodiness, and keep us updated on how you're feeling!

Link to comment
Share on other sites
squirmingitch Veteran

Thank you sweet Dani.smile.gif

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Itchy, I also meant to say that I'm very happy to hear you are on a rapid healing trend. I hope THIS time it sticks!smile.gif

Link to comment
Share on other sites
pricklypear1971 Community Regular

I was looking up quinoa/sals (because I was curious) and found this...

Chemical Similarities

Salicylates are very similar in chemical structure to nitrates /nitrites, benzoates, oxalates and sulphates/sulphites, and are a major component of many food colourings and flavourings. I also experience similar reactions to foods containing even traces of these chemicals. So, fresh, unprocessed foods are definitely the way to go.

Open Original Shared Link

She doesn't cite this, but let's take it at face value.

Those are things that are also linked to idiopathic urticaria - meaning they're known to cause skin problems without a disease dx.

Now, quinoa isn't a sal but I just thought I'd toss this info out here, because I found it, and if I didnt post it I'd forget about it.

Link to comment
Share on other sites
squirmingitch Veteran

I was looking up quinoa/sals (because I was curious) and found this...

Chemical Similarities

Salicylates are very similar in chemical structure to nitrates /nitrites, benzoates, oxalates and sulphates/sulphites, and are a major component of many food colourings and flavourings. I also experience similar reactions to foods containing even traces of these chemicals. So, fresh, unprocessed foods are definitely the way to go.

Open Original Shared Link

She doesn't cite this, but let's take it at face value.

Those are things that are also linked to idiopathic urticaria - meaning they're known to cause skin problems without a disease dx.

Now, quinoa isn't a sal but I just thought I'd toss this info out here, because I found it, and if I didnt post it I'd forget about it.

I think I understand what you're saying Prickly. Since Quinoa is not a fresh from the farm food then it draws it into question if I read you right? I can accept that if that's the point & that may account for the dh flare but what about all the other physical/mental happenings?

Link to comment
Share on other sites
pricklypear1971 Community Regular

I think I understand what you're saying Prickly. Since Quinoa is not a fresh from the farm food then it draws it into question if I read you right? I can accept that if that's the point & that may account for the dh flare but what about all the other physical/mental happenings?

No, that wasn't what I'm getting at (though there may be a link, I really don't know what other class it's in).

I was just posting something about chronic urticaria (which DH seems to have a lot in common with as far as activation) and sals.

I think you just have a problem with quinoa. Plain and simple.

Btw MSG and other sals gave me neuro symptoms when I first went gluten-free - I felt glutened. I think people who have corn, soy issues feel just as bad when exposed to those as when glutened.

Perhaps you can find out if quinoa is in a particular class of foods?

Link to comment
Share on other sites
squirmingitch Veteran

I think I'm really dense today.

Yes, I think I just plain have a problem with Quinoa. Bummer b/c I really like it & can eat it for breakfast & it carries me fine until lunch. But it's off my list. And I haven't done the Amaranth either since first of April & now I'm afraid to try it for a good long while.

I am still following low sal BTW.

I wouldn't (today) have a clue of how to find what class of food Quinoa is in. Not sure I would if I was 100%. Some of you guys surpass me by miles in understanding this stuff.

Link to comment
Share on other sites
pricklypear1971 Community Regular

The middle of a DH attack is not a time to think.

Goodness.

Sorry!

Link to comment
Share on other sites
mushroom Proficient

I think I'm really dense today.

Yes, I think I just plain have a problem with Quinoa. Bummer b/c I really like it & can eat it for breakfast & it carries me fine until lunch. But it's off my list. And I haven't done the Amaranth either since first of April & now I'm afraid to try it for a good long while.

I am still following low sal BTW.

I wouldn't (today) have a clue of how to find what class of food Quinoa is in. Not sure I would if I was 100%. Some of you guys surpass me by miles in understanding this stuff.

Here ya go:

Quinoa (play /ˈkiːnwɑː/ or /kɨˈnoʊ.ə/, Spanish: quinua, from Quechua: kinwa), a species of goosefoot (Chenopodium), is a grain-like crop grown primarily for its edible seeds. It is a pseudocereal rather than a true cereal, or grain, as it is not a member of the grass family. As a chenopod, quinoa is closely related to species such as beets, spinach, and tumbleweeds.

Open Original Shared Link

Quinoa ia bad news for me, and so are spinach and beets , so chenopods obviously don't agree with me. I have never eaten tumbleweeds, however. :D

Link to comment
Share on other sites
Lisa Mentor

I have never eaten tumbleweeds, however. :D

:blink: thought everyone ate tumbleweeds in AZ? Pffffff.... :rolleyes:

Link to comment
Share on other sites
squirmingitch Veteran

Why Shroomie are you saying you've never had the pleasure of eating sauteed tumbleweeds????? They are quite delicious!wink.giflaugh.gif

Thank you so much for finding that for me. Hmm.... I love both beets & spinach but haven't had either since November???? I never had problems with them then but we know that doesn't mean a thing now.

Link to comment
Share on other sites
pricklypear1971 Community Regular

:blink: thought everyone ate tumbleweeds in AZ? Pffffff.... :rolleyes:

Not yet....

I think I have a few shooting up in my yard. I'll have to toss them in my spinach tonight. :).

Link to comment
Share on other sites
squirmingitch Veteran

With a chaser of beet juice eh?smile.gif

Link to comment
Share on other sites
pricklypear1971 Community Regular

With a chaser of beet juice eh?smile.gif

Nah, I'll pass on that. Although I did find a cocktail recipe using beet juice and vodka....hmmm.....

Got beets???

Link to comment
Share on other sites
squirmingitch Veteran

Actually I do have beets --- in a jar. But not going there yet.

I DO have some Vodka just waiting for me. No sals, no gluten ---- I'm GOOD!

Link to comment
Share on other sites
Lisa Mentor

Actually I do have beets --- in a jar. But not going there yet.

I DO have some Vodka just waiting for me. No sals, no gluten ---- I'm GOOD!

So life is good! :D

Link to comment
Share on other sites
squirmingitch Veteran

Actually the last couple hours I've been feeling somewhat better. Not as fog brained & the dizzy, off balance stuff is only coming in waves now with breaks in between. I haven't had any new blisters or bumps appear since late afternoon & in general the itching has been much improved. Lots of places have settled down & are not raised anymore. I'm hoping this is going to be a short lived reaction for me. I sure hope so! Tonight in bed will tell the tale as far as the dh goes though. But if it gets bad I can get up & get a shot or two or 3 & go nighty nite.biggrin.gif

Link to comment
Share on other sites
mushroom Proficient

With a chaser of beet juice eh?smile.gif

And on a bed of quinoa :rolleyes: OMG, just the thought of it, quel horreur :ph34r:

Link to comment
Share on other sites
dani nero Community Regular

How are you feeling today squirming?

Link to comment
Share on other sites
squirmingitch Veteran

How are you feeling today squirming?

Periods of quite weak & shaky. Some dizzy but much better than yesterday. Not nearly as much brain fog. Woke up twice last night itching but it wasn't so bad & got right back to sleep. 1 new blister today & that's all. Lots of general body aches, bones, muscles, joints. Couldn't get enough to eat this morning --- like a bottomless pit. Makes me wonder if there's such a thing as sals withdrawal. But the best part is the unreasoning anger is gone. YAY!

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    2. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    3. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - mishyj posted a topic in Coping with Celiac Disease
      3

      Why?

    5. - cristiana replied to Aussienae's topic in Coping with Celiac Disease
      64

      Constant low back, abdominal and pelvic pain!


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,216
    • Most Online (within 30 mins)
      7,748

    William day
    Newest Member
    William day
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
×
×
  • Create New...