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

Man, Have I Been Glutened!

txplowgirl

By txplowgirl
in Super Sensitive People

Recommended Posts

txplowgirl Enthusiast
txplowgirl
Posted

This is rant, because I am so ticked off I can spit!

Dadgum it, I have avoided all the gluten free processed stuff for over a year now and 3 days ago I thought I should have had some healing so I thought I would try again. WRONG! I had a bowl of gluten free rice chex with my usual almond milk.

Went down ok, but later that evening came down with the D big time, had it most of that night, most of the next morning. Stomach was sore, felt tired and achey. That lasted all that day, woke up this morning with pain between the shoulder blades that have lasted all day long, have run a low grade fever all day and I have a little blister on the tip of my tongue that has evolved into a swollen tongue and swelling under it and my lower jaw, and just in the last couple of hours have developed a blister on the roof of my mouth. Needless to say the lower half of my face hurts. But hay, the bright side is that I haven't developed any anxiety and/or depression like I used to. :D But that might happen tomorrow, who knows. Just, I would love to have some cereal in the mornings. :(

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Poppi Enthusiast
Poppi
Posted

Owie owie owie. That pain between the shoulder blades is a big one for me too. It lasts for a couple of weeks when I get glutened. Big hugs, sorry you feel icky.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

Oh no! Sorry to hear this!! :( Crap! ((HUG))

I eat the gluten-free RICE Chex and seem to do okay and I'm pretty sensitive....wonder why you got hit so badly??

gosh, I hope you recover quickly!!

Link to comment
Share on other sites
txplowgirl Enthusiast
txplowgirl
  • Author
Posted

I tried all the gluten fee chex cereals a year ago and every single one did this to me. I was hoping that I had healed enough I could tolerate it but nope. So, I guess i'll stick with what I do know works for me and no more experimenting. :(

It's tickin me off so bad I feel like cussin, so here goes! Dadgum it dadgum it, dadgum it, dadbless it, son of a biscuit eater and God bless a milk cow! Whew! Feel a little bit better but not much. :D And thanks guys for the well wishes. :)

Link to comment
Share on other sites
Judy3 Contributor
Judy3
Posted

I'm sorry you don't feel well and that it was Chex... I eat them all the time and can't imagine if I couldn't.. :unsure:

Feel better!!

Link to comment
Share on other sites
T.H. Community Regular
T.H.
Posted

So sorry it zapped you so badly! If I ever find a gluten-free cereal that seems really safe, I swear I'm going to put it up here so darn fast!

Hope it passes soon, and the depression gives you a miss this time.

Link to comment
Share on other sites
dilettantesteph Collaborator
dilettantesteph
Posted

I guess there is a bright side. It means that your usual diet has been super gluten free for you to be able to react so seriously to something that really doesn't have all that much cc. I can't eat the rice chex either, and the last time I tried my diet wasn't as free of cc as it is now. I don't know how I'd react if I tried it again.

The last time I tried something processed I got a free sample of a name brand cookie at a celiac support group. I didn't think that it would hurt to have one bite, just to try it. Ha, ha.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

It's tickin me off so bad I feel like cussin, so here goes! Dadgum it dadgum it, dadgum it, dadbless it, son of a biscuit eater and God bless a milk cow! Whew! Feel a little bit better but not much. :D And thanks guys for the well wishes. :)

Wowzers! That must be cussin..Texas style! :lol: ...I admit, I have used words a LOT WORSE than that when I feel lousy(blushing) and they could not be printed here. :lol:

I hope you feel better quickly. I experimented last week with a Snickers bar since everyone seems to think they are okay...what a mistake!! 5 days of skin eruptions, anxiety, insomnia, racing heart...you know the drill...*&^%$#@! :lol:

Link to comment
Share on other sites
txplowgirl Enthusiast
txplowgirl
  • Author
Posted

Wowzers! That must be cussin..Texas style! :lol: ...I admit, I have used words a LOT WORSE than that when I feel lousy(blushing) and they could not be printed here. :lol:

I hope you feel better quickly. I experimented last week with a Snickers bar since everyone seems to think they are okay...what a mistake!! 5 days of skin eruptions, anxiety, insomnia, racing heart...you know the drill...*&^%$#@! :lol:

:P Actually I can cuss pretty bad to the point I can make a sailor blush. :D But since this is a family friendly forum I thought I ought to tone it down a mite. Those were my granmother's words for cussin. She was so religious I wasn't even allowed to say dang in front of her.

And today the backpain is gone but replaced with an all over body ache, itchiness,tingling and some numbness in random areas, slight all day headache and very fatigued. Usually I can drive 8 to 10 hours a day but today I could only manage 6. Thankfully I have a lot of time on this load. But happy to say no anxiety or depression which is a good thing. :)

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

:P Actually I can cuss pretty bad to the point I can make a sailor blush. :D But since this is a family friendly forum I thought I ought to tone it down a mite. Those were my granmother's words for cussin. She was so religious I wasn't even allowed to say dang in front of her.

I THOUGHT maybe you were being "restrained" for the forum. :lol: yes, making a sailor blush would be easy for me, too....ah well, we have every right to be pissed off when glutened and feeling yucky. ;)

Any better today, hon??

Link to comment
Share on other sites
padma Newbie
padma
Posted

I can't eat the Chex either. I think I have tried everything I could find available at the store (not on the internet) and I am reacting to every one. It is very frustrating. I finally threw them out so I couldn't talk my self into them being ok.

I have been making steamed organic brown rice and putting either organic almond mild or organic soy milk on it. It is really delicious. Someone suggested we wash the rice really well, so I have been doing that and not having any reactions. Thanks to whomever said that.

I made a chickpea flour and rice flour recipe yesterday, a dosa recipe someone posted. It was really delicious. I had a reaction though, I think it was the rice flour. Next time I am going to try to make my own flour with rice I wash and dry first.

Don't feel too bad about eating something you react to. I have been gluten free for 10 years and I am still learning. Since I quit eating any "gluten free" foods I have quit having stomach aches and d. and have lost weight for the first time in years. That is a double wow. I think those extra carbs were packing it on.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

The gluten free Chex cereals are made in a separate dedicated facility--so I am wondering--are you SURE it couldn't be anything else? (I'm not saying you aren't hurtin, hon--I'm just trying to help you sort it out)

This guy has an opinion about the BHT they use as a preservative in the chex--as opposed to it being the gluten. see what you think.

Open Original Shared Link

Link to comment
Share on other sites
txplowgirl Enthusiast
txplowgirl
  • Author
Posted

The gluten free Chex cereals are made in a separate dedicated facility--so I am wondering--are you SURE it couldn't be anything else? (I'm not saying you aren't hurtin, hon--I'm just trying to help you sort it out)

Yes maam, back when I first tried all the chex cereals it was during my elimination diet. And the other day when I tried this cereal I didn't have anything other than my usual stuff I eat every day. Nothing new for a good month until I had these chex, then bam.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

Yes maam, back when I first tried all the chex cereals it was during my elimination diet. And the other day when I tried this cereal I didn't have anything other than my usual stuff I eat every day. Nothing new for a good month until I had these chex, then bam.

look at the link I just posted--maybe it's the BHT?? Are you sensitive to preservatives??

Link to comment
Share on other sites
txplowgirl Enthusiast
txplowgirl
  • Author
Posted

This guy has an opinion about the BHT they use as a preservative in the chex--as opposed to it being the gluten. see what you think.

Open Original Shared Link

I just read that article. That is very interesting. Now to find other foods with BHT and give that a try. Not really looking forward to it but I would like to know.

Thanks for that Irishheart.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

I just read that article. That is very interesting. Now to find other foods with BHT and give that a try. Not really looking forward to it but I would like to know.

Thanks for that Irishheart.

Just a thought...! hope it's the answer!!

Link to comment
Share on other sites
dilettantesteph Collaborator
dilettantesteph
Posted

The gluten free Chex cereals are made in a separate dedicated facility--so I am wondering--are you SURE it couldn't be anything else?

The problem is that the separate dedicated facility is only as good as the raw ingredients that are brought into it. I buy my grains whole and sort and wash them before eating. I have found gluten grains in everything. I have looked through a lot of grains, and I don't doubt that the amount of gluten grains I find are much below 20 ppm in most cases, but for a super sensitive, finding any gluten grains is too much.

In fields they grow different grains in rotation, there are weeds of previous grains, there are gluten grains grown in adjacent fields, they use shared harvesting, storage, and transportation equipment. Things get too mixed up for super sensitives long before these raw materials get into the dedicated facilities.

Link to comment
Share on other sites
dilettantesteph Collaborator
dilettantesteph
Posted
Usually I can drive 8 to 10 hours a day but today I could only manage 6. Thankfully I have a lot of time on this load.

Are you a truck driver? I totally respect you for being able to manage this on a super gluten free diet. I was feeling proud managing to go to my nieces wedding 8 hours away.

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

The problem is that the separate dedicated facility is only as good as the raw ingredients that are brought into it. I buy my grains whole and sort and wash them before eating. I have found gluten grains in everything. I have looked through a lot of grains, and I don't doubt that the amount of gluten grains I find are much below 20 ppm in most cases, but for a super sensitive, finding any gluten grains is too much.

In fields they grow different grains in rotation, there are weeds of previous grains, there are gluten grains grown in adjacent fields, they use shared harvesting, storage, and transportation equipment. Things get too mixed up for super sensitives long before these raw materials get into the dedicated facilities.

I understand all that and you are probably right. That's the "maddening part" of trying to use so-called "gluten free products". From what I have learned, there is no such thing as 100% gluten free because of cross-contamination, no matter how many precautions are taken.

I also have some trouble with things considered "gluten free" and react to them as well. Much to my dismay. :unsure:

I was just suggesting other factors that may be at play. TXgal works hard at keeping her diet really clean, I know--- and she really wanted that bowl of cereal :) for some variety.

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted

I have been waiting for a year to try gluten free rice chex, and goshdarned if I haven't reacted badly to them too. Not a gluten reaction, but bad D - the chex are I think the only "new" addition to my diet. I had already decided not to have any this morning before I saw this thread. Will report back on possible BHT reaction.

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

I tried all the gluten fee chex cereals a year ago and every single one did this to me. I was hoping that I had healed enough I could tolerate it but nope. So, I guess i'll stick with what I do know works for me and no more experimenting. :(

It's tickin me off so bad I feel like cussin, so here goes! Dadgum it dadgum it, dadgum it, dadbless it, son of a biscuit eater and God bless a milk cow! Whew! Feel a little bit better but not much. :D And thanks guys for the well wishes. :)

Well...Golly! Gosh! My goodness sakes!

Hope your feeling better today!

( that was a really poor attempt at cussing!)

Link to comment
Share on other sites
IrishHeart Veteran
IrishHeart
Posted

I have been waiting for a year to try gluten free rice chex, and goshdarned if I haven't reacted badly to them too. Not a gluten reaction, but bad D - the chex are I think the only "new" addition to my diet. I had already decided not to have any this morning before I saw this thread. Will report back on possible BHT reaction.

"BHA, BHT, and TBHQ

BHA and BHT have been used, as food additives, in food products, with some restrictions, since the late 1950s. TBHQ is a more recent addition to the list of antioxidants allowed in food, in Europe, it became an accepted antioxidant for food use in 2004.

Their full names are:

BHA: Butylated hydroxyanisole (E320)

BHT: Butylated hydroxytoluene (E321)

TBHQ: Tertiary-butyl hydroquinone (E319)

There is nothing

Link to comment
Share on other sites
shayre Enthusiast
shayre
Posted

If it helps...I eat Nature's Path organic "Crispy Rice"...like Rice Krispies. I eat it every morning, and while I haven't gotten ALL of the kinks out of my diet...I've been good with them. I may have a problem when I consume too much rice in general, but I do not have issues with the cereal. They are pretty good, and I usually mix berries or bananas and almond milk in with them. I am learning the hard way that I appear to be very sensitive, so maybe you will be okay too? I buy them at Whole Foods, but here is the website www.naturespath.com. If any of you eat this and have a reaction...PLEASE DO TELL! I think that you'd be okay though...

Link to comment
Share on other sites
  • 2 weeks later...
Sarah Alli Apprentice
Sarah Alli
Posted

I've had to quit the chex too. I find they make me very shaky and weak- almost a hypoglycemic reaction but I only have it with the chex, not when I eat other sweet things like homemade cookies, so I don't think it's actual hypoglycemia.

It's a bummer, too. Cinnamon chex are really delicious.

Link to comment
Share on other sites
  • 2 weeks later...
Marz Enthusiast
Marz
Posted

If it helps...I eat Nature's Path organic "Crispy Rice"...like Rice Krispies. I eat it every morning, and while I haven't gotten ALL of the kinks out of my diet...I've been good with them. I may have a problem when I consume too much rice in general, but I do not have issues with the cereal. They are pretty good, and I usually mix berries or bananas and almond milk in with them. I am learning the hard way that I appear to be very sensitive, so maybe you will be okay too? I buy them at Whole Foods, but here is the website www.naturespath.com. If any of you eat this and have a reaction...PLEASE DO TELL! I think that you'd be okay though...

I've been eating the Nature's Path rice and corn cereals, and no reaction so far :) I mix currents, nuts and flaked coconut with it, tastes awesome :) Would also be interested if anyone reacts to this?

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    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

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...