Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

"Super Sensitive" Celiacs.....
0

478 posts in this topic

I don't do well with Bob's products in general. I can't do oats at all. It's a real shame because I love them so.

0

Share this post


Link to post
Share on other sites


Ads by Google:
This is a lot of what happens to me. I am generally unable to function for 7-10 days and tend not to remember much about the week. It's a lost week. Then I'm yucky for 2-3 more weeks. During these times everything that goes in my mouth bothers me. I also have terrible joint pains, insomnia, migranes, skin problems, etc. I have PCOS too and I swear every time I get glutened I develop a cyst. I too have been tested for everything under the sun and not much is out of whack. I'm just "too healthy to be this sick."

Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...

0

Share this post


Link to post
Share on other sites
"Oh, just a little bit can't hurt."

Yup, definitely the most common line out there!! I laugh at people when they ask that.

0

Share this post


Link to post
Share on other sites
I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.

Peanuts were so much harder for me than gluten, too! All my favorite candy had peanuts, and I spent a good week thinking about "what if I just have a little bit of peanut once a month or so..." It does seem silly because peanuts are so much easier to avoid than gluten.

0

Share this post


Link to post
Share on other sites
Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...

It's difficult sometimes but I found a groove about a year ago and am generally healthy now provided I stay away from the smallest amounts of gluten. Initially I was tempted to try new gluten-free things and trust people who really had no clue how to prepare food and was getting glutened every few months or so so I don't think I was fully healing. I did this off and on for about 18 months. I was getting better every day but was always frustrated with the setbacks. Once I stopped taking chances I started really improving but it still took another 12 or so months.

I had a lot of nutritional deficiences when I was diagnosed and everything is normal now.

0

Share this post


Link to post
Share on other sites




Initially I was tempted to try new gluten-free things and trust people who really had no clue how to prepare food and was getting glutened every few months or so so I don't think I was fully healing.

That's kind of what I did. Somewhere around the end of Nov I realized that I just cannot trust anyone but my husband or my mom to cook for me. That just because a product says gluten-free on it, doesn't make it safe. And just because a food is naturally gluten free, doesn't make it safe in a restaurant.

In some ways, I am glad that I am sensitive, although there are days when it wears on me. But it makes me very cautious about food, and I think in the long run, it keeps me from doing any further damage, whereas perhaps those less sensitive may be doing damage but not have any symptoms. I don't know whether I'm right on that or not, but it sure does help alleviate some frustration. B)

0

Share this post


Link to post
Share on other sites
Yup, definitely the most common line out there!! I laugh at people when they ask that.

For me it is usually a statement "A little bit can't hurt". I think they are comparing it eating a little bit of chocolate.

Cathy

0

Share this post


Link to post
Share on other sites

I do best when I don't take any "chances" (and by "chances" I mean eating many things that others with Celiac enjoy without problems). It seems almost every time I deviate from this, I get sick. I have to walk the "straight and narrow" ;)

I'm just speaking for my self here, but this includes topical products. I love to try new things, having still not found the perfect hair products :lol: .....kind of a never-ending quest which is made all the harder having to worry about gluten. I also need to avoid tocopherals and vitamin E in products unless I'm able to find out where they were sourced. That is very hard to find out, as most companies will gladly tell you if they add "gluten", but they have no idea where the E comes from.

I have to agree with everyone about the peanuts! I have developed a liking for almond butter, but I still crave peanut butter.

0

Share this post


Link to post
Share on other sites
For me it is usually a statement "A little bit can't hurt". I think they are comparing it eating a little bit of chocolate.

Cathy

Hi Cathy--nice to see you!

I agree--a lot of people just don't get that a molecule can start a reaction. My MIL is one of those people........

0

Share this post


Link to post
Share on other sites

I'm nearly three years down the line, I'm still not 100% right. There is still something that gets me. I have wondered about peanuts, now and then I will ditch them, but they seem to creep back into my life. I cannot tolerate roasted nuts, so my only peanut indulgence is organic peanut butter, which is just peanuts, oil and salt. I think I can handle this. But in having said this my stomach is playing up this morning. It could be the peanut butter, or it could be the coke zero I had yesterday. I'm more inclined to say the coke.

In reality I have given up soy, except for maybe oil and soy lecithin. Gluten free flours and pastas with soy would give me bad stomach issues and pains, usually on my left side. It was easy to give soy up, as personally I don't like the product.

Cathy

0

Share this post


Link to post
Share on other sites

I don't know which sweetener is in Coke Zero, but I react horribly to Splenda. I get D, but that pales in comparison to the nerological symptoms I get from it.

It scares the heck out of me.

0

Share this post


Link to post
Share on other sites

Patti, the coke had Aspartame (951) and something called acesulfame K (950), plus the usual caramel colouring (150d). Take my pick. It was a hot day, and the beach was calling and I was thirsty, and they didn't have diet lemonade, so I grabbed the next best thing I knew they would have!

Cathy

0

Share this post


Link to post
Share on other sites

Cathy--

I hear ya! :D Sensitivity to sweeteners is an individual thing--some can use them freely and some can't. It's hard sometimes to figure out what caused what, but the next time if the same thing happens, it'll ring a bell.

0

Share this post


Link to post
Share on other sites

Patti, I understand about the chances. I am the same way. I think a lot of my problems are really because I have so many other intolerances and each has a specific set of symptoms so I've learned through trial and error which gluten-free products don't cause any symptoms and stick with those. I make everything else. I really feel best when I do this so that's my motivation. I have so much to do and I really don't like having to limit my activities.

Liz, my husband is the only one allowed to cook for me these days.

0

Share this post


Link to post
Share on other sites
Patti, I understand about the chances. I am the same way. I think a lot of my problems are really because I have so many other intolerances and each has a specific set of symptoms so I've learned through trial and error which gluten-free products don't cause any symptoms and stick with those. I make everything else. I really feel best when I do this so that's my motivation. I have so much to do and I really don't like having to limit my activities.

Wow yes, that's it exactly.

We must be Celiac soulmates :D

0

Share this post


Link to post
Share on other sites
I do best when I don't take any "chances" (and by "chances" I mean eating many things that others with Celiac enjoy without problems). It seems almost every time I deviate from this, I get sick. I have to walk the "straight and narrow" ;)

I've been meaning to ask you, did I poison you with my candy?

0

Share this post


Link to post
Share on other sites
I've been meaning to ask you, did I poison you with my candy?

:D Not at all! In fact, that was the first time I'd eaten anything homemade not prepared by me in well over 3 years. How's that for trust? :rolleyes:

0

Share this post


Link to post
Share on other sites
We must be Celiac soulmates :D

Patti, that just cracked me up. I really needed the laugh!!!

I went to a support group for the first time ever, and had to listen to this man who made biscuits, took them to bojangles and TOOK THE HAM OFF THE BISCUIT AND PUT IT ON HIS gluten-free BISCUIT!!!!!!!!HE washed it off though....

I shudder to even think what would happen if I did something like that. :blink:

0

Share this post


Link to post
Share on other sites
I went to a support group for the first time ever, and had to listen to this man who made biscuits, took them to bojangles and TOOK THE HAM OFF THE BISCUIT AND PUT IT ON HIS gluten-free BISCUIT!!!!!!!!HE washed it off though....

My gawd.....yeah, I can't even imagine. But the fact that he washed off the ham did give me a little giggle. :P

0

Share this post


Link to post
Share on other sites

I give him an A for effort, though! :D

0

Share this post


Link to post
Share on other sites
We must be Celiac soulmates :D

I think so. I don't do coconut either so that solidifies our soulmateness! I'm not sure I have a comment on the Bojangles story other than I like to say Bojangles.

0

Share this post


Link to post
Share on other sites
So far I've only tried the name brand Natural Sunbutter by Sun Gold foods .. it says gluten-free on the label. I've been ok with it .. This is my 4th jar in the last 2 months ...

Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.

0

Share this post


Link to post
Share on other sites
Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.

I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.

0

Share this post


Link to post
Share on other sites
I'm just speaking for my self here, but this includes topical products. I love to try new things, having still not found the perfect hair products :lol: .....kind of a never-ending quest which is made all the harder having to worry about gluten. I also need to avoid tocopherals and vitamin E in products unless I'm able to find out where they were sourced. That is very hard to find out, as most companies will gladly tell you if they add "gluten", but they have no idea where the E comes from.

I have to agree with everyone about the peanuts! I have developed a liking for almond butter, but I still crave peanut butter.

I have to be super careful with topicals too. A lot of people try to claim it's perfectly safe, but obviously its not for some of us.

Do try the sunbutter, I think it's delicious. I intend to use it to try and make peanut butter swirl chocolate ice cream.

0

Share this post


Link to post
Share on other sites
I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.

Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any specific cashew butter that I know to to be OK, so I just do without. From what you said, I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined