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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,951
    • Most Online (within 30 mins)
      7,748
    SY8
    Newest Member
    SY8
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.