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

Man, Have I Been Glutened!


txplowgirl

Recommended Posts

txplowgirl Enthusiast

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. :(


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



Celiac.com Sponsor (A8-M):



Poppi Enthusiast

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.

IrishHeart Veteran

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!!

txplowgirl Enthusiast

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. :)

Judy3 Contributor

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!!

T.H. Community Regular

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.

dilettantesteph Collaborator

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.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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:

txplowgirl Enthusiast

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. :)

IrishHeart Veteran

: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??

padma Newbie

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.

IrishHeart Veteran

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

txplowgirl Enthusiast

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.

IrishHeart Veteran

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??

txplowgirl Enthusiast

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.

IrishHeart Veteran

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!!

dilettantesteph Collaborator

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.

dilettantesteph Collaborator
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.

IrishHeart Veteran

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.

mushroom Proficient

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.

kareng Grand Master

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!)

IrishHeart Veteran

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

shayre Enthusiast

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...

  • 2 weeks later...
Sarah Alli Apprentice

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.

  • 2 weeks later...
Marz Enthusiast

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?

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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.