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
      104,695
    • Total Posts
      921,779
  • Topics

  • Posts

    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,701
    • Most Online
      3,093

    Newest Member
    Dtroutmann
    Joined