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

"Super Sensitive" Celiacs.....

jerseyangel

By jerseyangel
in Super Sensitive People

Recommended Posts

Del Rookie
Del
Posted

Thanks for the reply, Lisa. I'm allergic or super sensitive to all medications so no, I did not take antibiodics. I did cough so badly that my entire insides ached for days.

Del

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

Celiac.com Sponsor (A8-M):


  • Replies 477
  • Created
  • Last Reply
JNBunnie1 Community Regular
JNBunnie1
Posted
Thanks for the reply, Lisa. I'm allergic or super sensitive to all medications so no, I did not take antibiodics. I did cough so badly that my entire insides ached for days.

Del

Probably cramping of some sort inside. Dont you hate when you cough so hard it makes you feel like vomiting?

Oceangirl: Can you have almonds, sunflowers seeds, cashews,or peanuts? You can take the butter of each of these and do this:

1 cup (whatever) butter

1 cup sugar

1 egg

Mix, make baby cookies, for some reason they come out better the smaller they are. I think they bae for 12 minutes at 325, but I'll double check a recipe somewhere and get back to you. I have also read tha tpeople have successfully used 1 cup of honey instead of sugar. These freeze very well, also.

dilettantesteph Collaborator
dilettantesteph
Posted

I tested Arrowhead Mills green lentils for gluten to about 0.5 ppm and got a negative result. They are listed as negative on their website. It looks like they are a trustworthy company. Just in case anyone needs a good lentil source.

Del Rookie
Del
Posted

Probably cramping of some sort inside. Dont you hate when you cough so hard it makes you feel like vomiting?

Thanks for the reply! And, yes, I sure do hate it when you cough really hard!!! I think this is the worst cough I've EVER had!

You're probably right about a cramp....now it's gone!!

Del

oceangirl Collaborator
oceangirl
Posted

JNBunnie,

Yum, yes, I will try that- I do eat nuts.

Glad to hear the cramp is gone. The cough could easily have added to your issues. And, I DO know how to write the English language somewhat correctly. Grr.... I don't like it when I have numerous typos! sigh... Pet peeve in this "texting" age.

Patti,

I also get a little reacty, in a more bearable way, from Glutino mixes and I know I react to tapioca (in lots of them) and DEFINITELY to honey (the fructose, I think) which is also in a lot of them. I use them to bake for my son who is still at home and for company treats but don't partake myself too often. The pure rice flour, though, I've been pretty sure I don't react to. Of course, I spent a full year feeling that way about Frito-lay fritos which you helped me discover have CC issues!

tra la la- the joy of eating.

P.S. On another note, I ALWAYS knew, even at the age of 11, that FOOD was the problem... No one believed me. I just thought of this: At seventeen I stopped eating for nine months other than a boiled egg a day. They call this "anorexia"- I'm wondering if it was a survival technique? I had never been fat, played sports and was a tomboy. I lost enough weight to be 105 pounds (I was 5'9") and almost died. (That's when I woke up and chose to live) Still, it's interesting to me on many levels now that I rejected food...

Good health to all,

lisa

Del Rookie
Del
Posted

If the cough didn't add to my celiac disease issues I'd be greatly surprise but being set back this far, especially the Big D, is very discouraging. Hopefully I'll get back to where I was soon!!!

I did read your entire post and what you wrote about reacting to Honey caused my eyes to pop.....I used honey for my cough.....I wonder if that's what set me back? Hmmmmm

Elaine

Kaycee Collaborator
Kaycee
Posted

Hi Angie.

Well I gave up corn for a couple of weeks and thought, this hasn't made a difference. But I was going to stick with it for a bit longer.

Then I went away overnight with my parents and I had taken a few convenient things to eat, and there was corn/maize in the crackers and I didn't think it would be too bad, as I was a bit sceptical about it being a problem. But then next day after eating them I got the old creaky feeling back, specially in my feet. I had forgotten all about those feet. So maybe corn is that missing link to my problems.

This week, first week back at work for about 8 weeks has been running smoothly, and yes I am corn free. And yes I am more sociable and yes I am not as tired. But I am grumpy.

Cathy

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted
If the cough didn't add to my celiac disease issues I'd be greatly surprise but being set back this far, especially the Big D, is very discouraging. Hopefully I'll get back to where I was soon!!!

I did read your entire post and what you wrote about reacting to Honey caused my eyes to pop.....I used honey for my cough.....I wonder if that's what set me back? Hmmmmm

Elaine

Elaine,

Honey although very good for most people, does have a laxative affect. If you are eating too much, that would explain the D. Back off a little.

Del Rookie
Del
Posted

I had never even thought about that....guess I was willing to do ANYTHING to stop coughing my guts out! I haven't had honey for days but I guess I'm still paying for it!!!

oceangirl Collaborator
oceangirl
Posted

Honey is high in fructose. Many people cannot digest this sugar well. Could be the issue as well.

lisa

Del Rookie
Del
Posted

That most likely is the problem....I know I've had problems with fructose! We should come with instruction booklets!!

ang1e0251 Contributor
ang1e0251
Posted

I like peppermint hard candies for sad tummy and coughs!

Del Rookie
Del
Posted
I like peppermint hard candies for sad tummy and coughs!

I never thought about peppermint for coughs!!! I just took a peppermint capsule for my sore tummy!!! How are you feeling today?

Elaine

JNBunnie1 Community Regular
JNBunnie1
Posted
JNBunnie,

Yum, yes, I will try that- I do eat nuts.

Ok, checked the original recipe from gluten-free girl, 350, ten minutes.

oceangirl Collaborator
oceangirl
Posted

Thank you- I'm going to make some this weekend!

Jestgar and Fiddle -Faddle,

That's a very good idea for begging critters; I like that and will give it a try. Besides the new puppy, (Bruce-black lab), I have 2 other dogs, 6 cats (one three-legged one) and a bodacious rabbit that lives with us in the house.

Perhaps gluten made me lose my mind.....

lisa

Sailing Girl Apprentice
Sailing Girl
Posted

Does anyone have a recommendation for a "super-sensitive safe" brand of sugar? I don't normally use sugar (I mostly follow SCD), but I plan to make a flourless chocolate cake for my friend's birthday this weekend. Somehow, the mainstream sugar brands just frighten me -- perhaps I'm being paranoid? Does anyone use a specific brand of sugar regularly and find it to be safe?

Mike M Rookie
Mike M
Posted
Does anyone have a recommendation for a "super-sensitive safe" brand of sugar? I don't normally use sugar (I mostly follow SCD), but I plan to make a flourless chocolate cake for my friend's birthday this weekend. Somehow, the mainstream sugar brands just frighten me -- perhaps I'm being paranoid? Does anyone use a specific brand of sugar regularly and find it to be safe?

Hello Sailing Girl, I don't think you will have a problem with sugars. Have done a lot of testing and have not had a positive yet. Only thing that some may have a problem with would be the corn based sugars (if they have a corn issue). Domino's tested negative (both powdered and granular) Flavorite brand brown sugar tested negative. We use Florida Crystals organic brand and it also tested negative. Hope this helps, Mike

happygirl Collaborator
happygirl
Posted

oceangirl - At least some of these treats/food are wheat free and many are grain free. Saw them at Petco. Open Original Shared Link

oceangirl Collaborator
oceangirl
Posted

Happygirl,

Thank you!

lisa

EileenB Newbie
EileenB
Posted

I cannot tolerate rice. Anyone else have that problem?

Eileen

Thanks for recreating the thread Patti :D

From what I remember of my post in the first thread: I know that as time as gone by, I've gotten more sensitive. When I first went gluten-free, I was so thankful that I wasn't like so many here who are sensitive and have other intolerances...

HAHAHA the jokes on me! <_<

I think I finally had to accept it, too, that I was waaayy more sensitive than I thought I was. But for awhile I couldn't figure out why I would have "the burn" when I was soo sure that I hadn't had gluten. But I am realizing now that it was trace amounts. I think I wanted to believe that I could use the shortcuts like others, but I'm pretty much making everything from scratch these days.

On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.

Sailing Girl Apprentice
Sailing Girl
Posted
Hello Sailing Girl, I don't think you will have a problem with sugars. Have done a lot of testing and have not had a positive yet. Only thing that some may have a problem with would be the corn based sugars (if they have a corn issue). Domino's tested negative (both powdered and granular) Flavorite brand brown sugar tested negative. We use Florida Crystals organic brand and it also tested negative. Hope this helps, Mike

Mike, thank you so much -- that's great to know!

  • 2 weeks later...
MarsupialMama Apprentice
MarsupialMama
Posted
Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

Well I would have been one of those people who would think "There's no way it can be that serious" if I hadn't gone through it with my daughter. It is INSANELY ridiculous. And to find out where she has got glutened is really hard since we are so careful It's like....there is some invisible boogey-man out there that attacks and we never know it - how, when, or where ......all we see are the symptoms and think "OH NO!!! NOT AGAIN!!!"

HOW DO YOU LIVE IN THIS WORLD? I'm getting more and more nuts over this, realizing she is more sensitive than I ever dreamed, and like, NOTHING is safe! Forget grains.....NOTHING is safe.

Sorry. just venting. In this by myself.

jerseyangel Proficient
jerseyangel
Posted
  • Author
Sorry. just venting. In this by myself.

<sigh> I know it can be so hard sometimes, but you're not alone. Let us know what we can do to help :)

Or just vent, if that's what you need to do right now ;)

lizard00 Enthusiast
lizard00
Posted
Well I would have been one of those people who would think "There's no way it can be that serious" if I hadn't gone through it with my daughter. It is INSANELY ridiculous. And to find out where she has got glutened is really hard since we are so careful It's like....there is some invisible boogey-man out there that attacks and we never know it - how, when, or where ......all we see are the symptoms and think "OH NO!!! NOT AGAIN!!!"

HOW DO YOU LIVE IN THIS WORLD? I'm getting more and more nuts over this, realizing she is more sensitive than I ever dreamed, and like, NOTHING is safe! Forget grains.....NOTHING is safe.

Sorry. just venting. In this by myself.

The GLUTEN BOOGEY MAN!!!! I LOVE IT!! :lol::lol:

That's how we live in this world, we use twisted humor. LOL

Seriously, it can be totally frustrating. I can't imagine if I had to deal with it with my child, especially if I didn't have celiac. So, you get a big pat on the back from me! :wub:

My system is really sensitive, and I can eat grains in small amounts, but only with protein or after I've eaten something else. Definitely not on an empty stomach. You learn what makes you feel bad and what works.

But yes, you can't assume anything is safe because it should be. You have to check and double check, and sometimes you still miss it. Like Patti said, if there's anything we can do to help, just let us know.

oceangirl Collaborator
oceangirl
Posted

Eileen,

I could not tolerate any grains for 2 years including rice. I still cannot eat plain rice, however, can eat Tinkyada pasta- go figure.

I don't do any substitutions other than the Tinky and that seems fine- but not every day!

Tra la la.....

Be well,

lisa

Archived

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

Go to topic listing

  • 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. Ednamay
      - Ednamay commented on Scott Adams's article in Winter 2026 Issue
      1

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      Why do humans become intolerant to Gluten?
    2. imdoodah331
      - imdoodah331 commented on Scott Adams's article in Additional Concerns
      4

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      I'll be adding my wheat based snack plates to the donation box.
    3. Scott Adams
      - Scott Adams replied to Roses8721's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      gluten-free Oatmeal

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      22

      My only proof

      Well said, @Mari!
    5. knitty kitty
      - knitty kitty replied to Ginger38's topic in Related Issues & Disorders
      10

      Shingles - Could It Be Related to Gluten/ Celiac

      Hi, @Ginger38, I've had shingles in the past. I understand how miserable you're feeling. Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten. The virus lives dormant in the nerves on the left side of my face. It causes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    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

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.