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"Super Sensitive" Celiacs.....

jerseyangel

By jerseyangel
in Super Sensitive People

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jvosicky Newbie
jvosicky
Posted

"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? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.

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mayfaire Newbie
mayfaire
Posted
"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? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.

I am also sensitive to all those things and more. Learning about all of this is fairly new to me. I have had the strangest symptoms that range from a sudden outbreak of intensly itchy hives (from eating blue corn)to dry mouth/eyes, nerve pain and it has left me feeling like my body is foreign to me in how it feels and reacts. Something I read said that it took years for the damage (flattening of villa in intestines, causing mal-absorption of nutrients) to occur so the cure will take awhile but to be hopeful because the intestines are very long (size of tennis court if laid out?) and healing will come.

I sometimes despair when I think of my old life just a few short months ago when I thought I was reasonable healthy and didn't plan my meals, but looking back I see that what I thought was healthy wasn't that great and the symptoms I attibuted to meno-pause were in fact gluten sensitivity.

mayfaire Newbie
mayfaire
Posted
Thank you for the ideas, GFinDC, I've been making my own chicken broth but am too sensitive to eat legumes right now, my sister mentioned quinoa also, I will give it a try.

It is a relief to read some of the experiences in here, it sounds so much like my own experience--I try to explain what is going on with me to my family but it really baffles most of them.

Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Lisa Mentor
Lisa
Posted
Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Try cooking your quinoa in chicken broth. I use HerbOx bouillon granules. I found it quite good, with a tad of butter.

Gentleheart Enthusiast
Gentleheart
Posted
Hello Gentleheart, I'll betcha if you give them a call, they would consider a small special run for you and leave out the cornstarch. I could be wrong. They seemed like really nice folks. If you don't feel like calling them, let me know. I will call. All the best, Mike

Thanks, Mike. You're very nice. :)

I will consider doing that when I get done with the SCD I'm currently trying.

Crystal Brown Rookie
Crystal Brown
Posted
"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? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.

I'm sensitive to dairy, soy, sugars (not sure which ones, I'll say all of them for now), corn, nuts, bananas and apples. =P

The nuts cause me to break out with mouth sores (peanuts to almonds, doesn't matter).

The bananas cause HORRIBLE cramping and D.

Apples give me migraines.

Sugar, I think, does some very odd things including cramping, D and C. I'm still not sure if it is sugar or soy lechitin.. Oh! I also get rashes under my eyes with too much sugar.

Soy... cramping and C, then D.

Dairy.. gas, cramping, cold and flu type symptoms.

WOW! I sound like a mess! :/

And of course gluten.. I'm not sure if this one is common, but I was cleaning out something that had wheat flour in it and my hands literally started turning red and burning... Is that possible??

Allergy Sue Newbie
Allergy Sue
Posted

Hey,

I am new to this board but I am not knew to problems with eating gluten foods. I have always had pain, congestion, depression, anxiety, and flu like symptoms when I ingest gluten or dairy. But after going to many different physicians I did not have any answers. A friend of mine took me with her to an alternative health doctor. So, I made an appointment to see the doctor. Took tests and found out a lot of my problems are due to eating gluten and dairy, and prepackaged foods with dyes, preservatives, etc., in them.

With a family that do not believe that foods can cause these problems I am the odd one out sometimes. But I am learning to eat gluten free. And learning to make meals that are nutritious and that my family will not suspect do not have the offending wheat and dairy in them. Making gluten free, dairy free meals was hard for me at first.

I am glad I found this thread this evening. Thanks for starting this thread again. Allergy Sue

I was thinking it would be nice to have a thread where we can kick ideas around that work for us, as well as share our frustrations with others who understand.

My original thread on the subject was inadvertantly lost, but there was so much interest that I'd like to try again. :D

After being gluten-free for a good three and a half years, I find myself just as sensitive--if not more--than I was when I started. My reactions have gotten less severe, but they tend to drag on a lot longer. One thing that has improved greatly is the anxiety. Before I was diagnosed, I had full on panic attacks. I've not had a panic attack since going on the diet, and the near-crippling anxiety is all but gone after taking about 18 months to begin to improve.

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.

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num1habsfan Rising Star
num1habsfan
Posted

Well I have discovered this week that thanks to some extreme stress and being super upset, it was enough to trigger Celiac off---along with a major migraine that's lasted me for the last 5 days. Definitely worse than a headache. Headaches do not make me sensitive to light.

Now tonight, for some WEIRD reason, something inside of me snapped. I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat. But it's bad enough that I swear, if I see someone eating pizza at the university tomorrow, I'll cry. There's no doubt about it!

mushroom Proficient
mushroom
Posted
Well I have discovered this week that thanks to some extreme stress and being super upset, it was enough to trigger Celiac off---along with a major migraine that's lasted me for the last 5 days. Definitely worse than a headache. Headaches do not make me sensitive to light.

Now tonight, for some WEIRD reason, something inside of me snapped. I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat. But it's bad enough that I swear, if I see someone eating pizza at the university tomorrow, I'll cry. There's no doubt about it!

Oh you poor dear! I have not experienced the gluten craving, but best to take an extra big hanky with you tomorrow :)

num1habsfan Rising Star
num1habsfan
Posted
Oh you poor dear! I have not experienced the gluten craving, but best to take an extra big hanky with you tomorrow :)

Thank you...like I said, this is the first time in a longgg time I've had gluten-filled cravings. Someone said the word "blizzard" and I thought of the icecream treats, and then they said the word "flakes" and I thought of cereal. That's how bad it is! I'm afraid of buying coffee in the morning, ahhh! When I see donuts or other goodies...

GFinDC Veteran
GFinDC
Posted
Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Sorry to hear that Mayfaire! I see on this link that they recommend rinsing it first before cooking. Seems there is a coating on the outside that can have a bad flavor. I haven't noticed it myself, but maybe the kind you bought had more need of rinsing than mine. They also say the red kind has a better flavor, although I've only done the white kind myself.

Anyhow if your gut is happy why do you need to be happy too? Picky picky...:D

Open Original Shared Link

GFinDC Veteran
GFinDC
Posted
Hi everyone,

I'm new here and wanted to thank you for this thread. I'm just beginning my journey in discovering and accepting the level of my gluten intollerance. I've been severly lactose intollerant for over 20 years and have had issues with gluten for the past few years. They've gotten worse and it's time for me to get serious about avoiding it. Been feeling very bloated the last couple of weeks and have trouble sleeping.

Looking forward to learning more and getting tips from everyone.

-Dee

Hi Dee, (CampingGirl08),

Your story sounds sorts like mine. I was lactose intolerant for many years before I found out my real problem was gluten. I have a hard time sleeping if I eat dairy. Stick around, there is plenty to learn here.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
I'm not sure if this one is common, but I was cleaning out something that had wheat flour in it and my hands literally started turning red and burning... Is that possible??

YES... totally possible, and it sounds like a true allergic reaction (IgE). Some people have celiac disease AND a wheat allergy :blink:

When I get hives on my arms or face it looks splotchy, but my hands just turn solid red.

lizard00 Enthusiast
lizard00
Posted
I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat.

You know, I don't usually crave gluten either. But, I've recently found out I'm pregnant, and this one has been much harder than the first, as far as nausea and such. I'm hungry, but I find that recently I've been craving pizza and chick fil a sandwiches (which I stopped eating LOOOOONNG before I went gluten-free), and the thought of veggies that I normally love are a total turn off.

They're too different circumstances, but I feel your frustration. That's when the completely logical side of you has to kick in and know what the repercussions will be if you cave. Hopefully, it will pass quickly for you. (and me!)

mayfaire Newbie
mayfaire
Posted

Anyhow if your gut is happy why do you need to be happy too? Picky picky...:D

Thanks for the chuckle. I did rinse it, but maybe not enough. It smelled so good while cooking, reminded me of okra, anyway my gut says "ahhhh".

Someone also told me papaya is a good stomach tranquilizer, so when I am able to find it that feels soothing too.

oceangirl Collaborator
oceangirl
Posted

Hi Sensitives,

Sorry to change the subject and I know this should probably go on the "foods" section, but, since this is a super-sensitive thread I'm going to ask. Veterans, particularly, could you tell me your absolute trusted canned tuna w/o SOY and, preferably without preservatives as well?

Thank you so much!

jerseyangel Proficient
jerseyangel
Posted
  • Author

I can't help you with that one, Lisa--I don't eat tuna. Don't really know why, since I like it..... :unsure: Just haven't had it in a long time.

Well, I'll see if you get any answers and maybe try a tuna sandwich again sometime with lots of chopped celery and lettuce :D

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Sensitives,

Sorry to change the subject and I know this should probably go on the "foods" section, but, since this is a super-sensitive thread I'm going to ask. Veterans, particularly, could you tell me your absolute trusted canned tuna w/o SOY and, preferably without preservatives as well?

Thank you so much!

Starkist makes one, the only I have found other than the one I get at Wegmans.

From their website:

Open Original Shared Link

Gourmet Choice

jerseyangel Proficient
jerseyangel
Posted
  • Author

Thanks Ravenwood--I'm making a note of that. :)

MaryJones2 Enthusiast
MaryJones2
Posted

Trader Joe's Albacore Tuna is also soy-free. It's just tuna and water. I eat it all the time and have never had a problem. It's one of the dozen or so processed foods I can eat.

oceangirl Collaborator
oceangirl
Posted

Thanks, Patti and Ravenwood and all!

Ravenwood, I will look for that.

Hope everyone is feeling well...

lisa

  • 2 weeks later...
Sailing Girl Apprentice
Sailing Girl
Posted

Hello fellow super-sensitives,

Anyone know of a completely safe cocoa powder? Even the one sold on celiac.com (Shiloh's) is processed on shared lines. I want to make chocolate ice cream (with coconut milk), but need some cocoa powder. Any help would be much appreciated!

jerseyangel Proficient
jerseyangel
Posted
  • Author

Hi Sailing girl :)

I just use Nestle's Pure Cocoa Powder. Never a problem with it.

Swansong Newbie
Swansong
Posted

I've been gluten free since July 08, and although initially I began to improve immediately, some of my symptoms have not gone away... primarily trouble with my bowels and fatigue.

I understand you can get cross contamination from using glutenized utensils, but I've done all I can do to keep that from happening. I'm starting to believe I am highly sensitive, and react even from touching wheat products. I make my husband's lunch every day... you guessed it, a sandwich. So I'm wondering if just touching the bread could be the culprit. Any thoughts?

I'm still feeling way better than I did when I was first diagnosed... back then, I couldn't eat anything or get out of bed for more than a few minutes at a time... but I was hoping by now that the emergency trips to the bathroom would have stopped. (it always happens when I get in the car to go anywhere... grrrrr!)

But at least, I no longer have the horrible pressure in my gut, or the severe heartburn and acid reflux. Anyway, like the rest of you, I'm just trying to learn to live with this thing and live a good life.

oceangirl Collaborator
oceangirl
Posted

Swansong,

My thought is it may not be from touching the bread but simply from the fact that (it sounds like) you do not have a gluten-free home. I think many supersensitives will agree that until there house was "safe" mysterious glutenings continued. I know that was true for me and I am VERY careful, cook almost all my own food, never eat out, yadaydayada...

Good luck and feel better,

lisa

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