Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

I'm sure hoping someone can help me.

Getting complany for a week and I feel like i want to die.

I'm only able to sit and type becasue I'M DESPRATE for info.

gluten-free for 17 weeks except for these 3 X's and one other from unknown gluten

I had a reaction the "k" cinn rolls 2x's and made a post. No real answers from the forum. First time with cinn rolls thought it was the oj i had with it.

last time just coffee with it but the belching and stomachache and had to go to bed with heating pad.

Pizza first time in 17 weeks-- had another incident last nite. Woke up stomach pains and didn't make to the bathroom. Same old symptoms you all know.

Here's the list in the "K" pizza crust--

water

Sweet Rice flour

tapicoca starch

whole eggs

corn starch

sunflower and/or canola oil

sugar,

YEAST

vitamin blend (thiamine, vit B2 Niacin, Folic Acid, iron)

sodium carboxy Methylcellulose, salt

Questions--

I've been trying to go milk loctose free also so no cheese but last 2 weeks adding some swizz ch maybe a couple of days last week.

last nite had the topping of a spag sause i made gluten-free with cooked hamb/onion/garlic/gr pepper/onions

Put mozz cheese that was bulk and free of other than milk i think

too tired to go down and look at ingred of that too:(

didn't know to free so cinn rolls were in refrig for a couple of weeks before freezing

same as the pizza crust..could that be it????

I'm seeing people have problems with YEAST lord never thought of that issure.

I'm just so depressed and feeling hopeless for the first time as i've struggled though these past 17 weeks.

Janvan said with the cinn rolls, maybee too old or a fruit sugar problem...

Ok, I hope can find some answers today on the forum....I don't have time for this with complany coming. Pacing my self all week so i wouldn't over do and now flat on my back with my best friend the OLE HEATING PAD.

ANY IDEAS YOU HAVE WILL BE GREATLY APPRECIATED.

Judy in Philly

Share this post


Link to post
Share on other sites
I'm sure hoping someone can help me.

Getting complany for a week and I feel like i want to die.

I'm only able to sit and type becasue I'M DESPRATE for info.

gluten-free for 17 weeks except for these 3 X's and one other from unknown gluten

I had a reaction the "k" cinn rolls 2x's and made a post. No real answers from the forum. First time with cinn rolls thought it was the oj i had with it.

last time just coffee with it but the belching and stomachache and had to go to bed with heating pad.

Pizza first time in 17 weeks-- had another incident last nite. Woke up stomach pains and didn't make to the bathroom. Same old symptoms you all know.

Here's the list in the "K" pizza crust--

water

Sweet Rice  flour

tapicoca starch

whole eggs

corn starch

sunflower and/or canola oil

sugar,

YEAST

vitamin blend (thiamine, vit B2 Niacin, Folic Acid, iron)

sodium carboxy Methylcellulose, salt

Questions--

I've been trying to go milk loctose free also so no cheese but last 2 weeks adding some swizz ch maybe a couple of days last week.

last nite had the topping of a spag sause i made gluten-free with cooked hamb/onion/garlic/gr pepper/onions

Put mozz cheese that was bulk and free of other than milk i think

too tired to go down and look at ingred of that too:(

didn't know to free so cinn rolls were in refrig for a couple of weeks before freezing

same as the pizza crust..could that be it????

I'm seeing people have problems with YEAST  lord never thought of that issure.

I'm just so depressed and feeling hopeless for the first time as i've struggled though these past 17 weeks.

Janvan said with the cinn rolls, maybee too old or a fruit sugar problem...

Ok, I hope can find some answers today on the forum....I don't have time for this with complany coming. Pacing my self all week so i wouldn't over do and now flat on my back with my best friend the OLE HEATING PAD.

ANY IDEAS YOU HAVE WILL BE GREATLY APPRECIATED.

Judy in Philly

<{POST_SNAPBACK}>

Sounds like it could be a number of things. Eggs, yeast, sugars, old food, cheese, who knows?!?!! My suggestion would be that you take things back to square one and begin adding foods. Go back to plain and simple and add in a few things at a time to test how they make you feel. Keep a food diary and keep track of how much you eat, when you ate it, how you felt etc. This should help you find your culprit!! :ph34r:

Good luck and hope you get to feeling better soon!

-Jessica :rolleyes:

Share this post


Link to post
Share on other sites
Sounds like it could be a number of things. Eggs, yeast, sugars, old food, cheese, who knows?!?!! My suggestion would be that you take things back to square one and begin adding foods. Go back to plain and simple and add in a few things at a time to test how they make you feel. Keep a food diary and keep track of how much you eat, when you ate it, how you felt etc. This should help you find your culprit!!  :ph34r: 

Good luck and hope you get to feeling better soon!

-Jessica :rolleyes:

<{POST_SNAPBACK}>

Jessica BLESS YOU

At least I'm not feeling so alone in all this 'muddle'

I think your idea is so right on. It's what I was thinking and started doing last week. Keeping the food diary again...keep it simple...I was eating at regular times and not skipping breakfast...putting my celiac disease as the top piority in my lift BUT with the cleaning and planning for company I didn't eat yesteray until 3:00 and just had my home made ck soup and rice crackers and 2 tbs of gluten-free p butter...so will do as you say.

Just went and had small amount of almond breese milk and 1/2 a banana and will see..just couldn't face gluten-free cereal this am. Will have a poched egg in an hr. bee eating the "K" white bread as ran out of brown rice bread. Maybe it's something in the "K" products..with try to compare the " (b r bread) ingred and the "K" and see the difference. THe white "K " has been new to me.

wonder if anyone else has a problem with the "K" products.

It's such a beautiful day in Philly i wonder if it's nice in the rest of the US Hope to get some more imput but Jessica, thank you again.

Judy

Share this post


Link to post
Share on other sites
Guest nini

I don't have a problem with the Kinnikinick products, sounds to me it could be any number of things going on, like was mentioned before.

I think you are wise to keep a food journal and go back to basics. Avoid any of the "processed" foods for now, even if they are gluten free. There may be another food sensitivity you have developed.

Good luck with it all. I know how frustrating it is.

Share this post


Link to post
Share on other sites
I don't have a problem with the Kinnikinick products, sounds to me it could be any number of things going on, like was mentioned before.

I think you are wise to keep a food journal and go back to basics. Avoid any of the "processed" foods for now, even if they are gluten free. There may be another food sensitivity you have developed.

Good luck with it all. I know how frustrating it is.

<{POST_SNAPBACK}>

Thanks Nini,

Going to do the food journal and appreciate the responce...It is so frustrating ....

I think also i realized last week that this was how i going to live for the 'rest of my life' and it kinda hit home.....I was so focused on 'feeling blessed to have an answer and dx' and was feeling so wonderful the first 2 months, now just seems the 'new sensitivities' I'm developing are overwhelming...

again Thanks for caring.

Judy

Share this post


Link to post
Share on other sites
Guest nini

I know it can be overwhelming. Sometimes I get so paranoid that I am going to react to things, that I will go days eating the same few basic foods... rice and beans, Larabar's, pear salad and cheese toast... I get really chicken to try anything else during those times... I guess it's just a mental thing...

Share this post


Link to post
Share on other sites
I know it can be overwhelming. Sometimes I get so paranoid that I am going to react to things, that I will go days eating the same few basic foods... rice and beans, Larabar's, pear salad and cheese toast... I get really chicken to try anything else during those times... I guess it's just a mental thing...

<{POST_SNAPBACK}>

seems we are emailing at the same time...I do the same thing..eating the same things for days BECASUE IT'S SAFE.

Had a Larabar's and lips felt puffy and warm and stretched (go figure) so am thinking there might be somethingt to this fructose thing...

Hang in there today and be good to yourself. Last nite was tough for you to say the least.

Judy in Philly

Share this post


Link to post
Share on other sites

From reading your posts I would guess that your problem is dairy. If I were you, I would try going 100% casein free for a few weeks and see if that helps. This means reading lists for dairy especially chips, margerine, candy, gluten-free baked goods, ect. I found that going dairy free made me feel sooooooo much better. I hope you feel better soon.

Share this post


Link to post
Share on other sites
From reading your posts I would guess that your problem is dairy. If I were you, I would try going 100% casein free for a few weeks and see if that helps. This means reading lists for dairy especially chips, margerine, candy, gluten-free baked goods, ect. I found that going dairy free made me feel sooooooo much better. I hope you feel better soon.

<{POST_SNAPBACK}>

Thanks Carie

I'm thinking the same thing, even tho i hate the thought i hate to feel this way even more!!!

I have given up milk & ice cream..still eating real butter which doesn't seem to bother me...but think it's the cheese...Does the land of lakes butter have casein in it? I had just started adding things like the bakery rolls, pizza etc the last 2 weeks. Still confused re: casein as i bought the rice cheese and saw it had casein so threw it out....I've read all the posts re: casein & lactose & milk on the forum but still just pain confused so guess...when in doub...leave it out is true. Just wanted to start adding a variety of new things so guess it's back to 'the basics'

thanks again for your time and expertice. Judy

Share this post


Link to post
Share on other sites

Judy, Just to add my 2 cents on the casein connection. I was told by my Dr. to go gluten-free and dairy free after my DX. I went completely gluten-free but allowed myself butter (no other dairy at all). About 3 or so weeks ago, I finally gave up the butter. There was a definate improvement. The other thing I thought of when I saw your prediciment was that sometimes people just can't tolerate a certain brand of food. I am that way with Pamela's mixes. I get sick to my stomach every time. I've never used the K products, but maybe you just can't tolerate them.

Share this post


Link to post
Share on other sites
Judy, Just to add my 2 cents on the casein connection.  I was told by my Dr. to go gluten-free and dairy free after my DX.  I went completely gluten-free but allowed myself butter (no other dairy at all).  About 3 or so weeks ago, I finally gave up the butter.  There was a definate improvement.  The other thing I thought of when I saw your prediciment was that sometimes people just can't tolerate a certain brand of food.  I am that way with Pamela's mixes.  I get sick to my stomach every time.  I've never used the K products, but maybe you just can't tolerate them.

<{POST_SNAPBACK}>

Jessica

Boy I sure appreciate you guys out there.

I was thinking that too. I see where no one else (that i'm aware of) has said this about that "K" product. Since we all seem so different and react to different things this makes sence. I might not just be able to have these and since they are just 'junk food' so to speak, anyway. No big deal. Interesting about you and Pamalas products.

I'm feeling better so at least that's a relief..I work alittle, ck the computer and work alittle. Almost done and husband agreeded to go shopping and do chili for tomorrow nite dinner so don't have to worry about that, thank God. They are easy company so that's a blessing too.

Thanks again for your concern. If i feel strong enough i'm going out to get that brown rice bread. I know that has agreeded with me for the 8 weeks i've used it.

Think all the opinions on going back to basics and the food diary are the way to go.

At least I don't want to die at 2:16 today :) :) have to keep that sence of humor. It's what has kept me sane..or at least somehwhat sane...

Have a great day and feel free to chime in anytime you think of something else.

I'm open to it all. Gosh the butter was the only thing i really enjoyed esp on baked potatoes since i stopped the sour cream.

Judy

Share this post


Link to post
Share on other sites

Hey Judy,

Sorry to hear you're feeling lousy. I recently had a "gluten reaction" as well and found that the food journal helped me. I am new to celiac disease and have a hard time with dairy. Could that maybe be the culprit for you? I'm not sure whether you've had celiac disease for a while, but it takes some time to work dairy back into your diet. Just a guess. Hope you feel better.

Share this post


Link to post
Share on other sites

I noticed that you had the Kinnikinnick products in the fridge for two weeks. Their products must be kept frozen or they spoil (unless of course you take a couple of slices for lunch).

Share this post


Link to post
Share on other sites

Just like to chime in and agree with everyone else. I was having major problems until I cut out everything but meat, rice, raw fruits and veggies. And for a while, I was having problems with too much sugar or fat, when my body was just beginning to heal. Over time, I've put more things back in, but I now know that I have problems with dairy (casein) and soy. Which brings me to my next point...

How frequently are you drinking Almond Breeze milk? I had cut out soy, but bought some of that without reading ingredients well enough, made me VICIOUSLY ill because of the soy. You may want to cut that, too, for a while. And if you're using any processed products, there could be risk of cross-contamination in the manufacturing process. You may also want to get a comprehensive allergy test so you know exactly what bothers you.

I really hope you get this all figured out, and I know how much of a pain it is (and how distanced you can feel from others the more "restrictive" your diet gets). Good luck!

Share this post


Link to post
Share on other sites

From talking to them previously, they told me that they are a 100% dedicated gluten free facility. They do not even allow people who work there to bring gluten containing foods into work for their lunch(that's what I was told) They seem to be very strict about it. I have no problems whatsoever with their products so I would look into other things that you may be reacting to.

Share this post


Link to post
Share on other sites

Just adding some info about going CF (casein-free):

Ghee is OK - "Clarified butter". I like it :-)

I would not go soy free until trying gluten and casein first (unless you test positive for allergies to soy). I feel it is best to get rid of the 2 obvious offenders and then see what happens, because you do not want to eliminate all foods at once...BUT you would need to try the Gluten-free Casein-free diet for about 8 months to be sure all of those ugly peptides are out of you....

--------------------------------------------------------------------------

The following info is from The Henry Spink Foundation web site

http://www.henryspink.org/gluten_casein_allergies.htm

"Traces of gluten remain in the body for at least eight months after stopping taking gluten, it is therefore necessary to follow a strict diet for several months in order to see any improvement. This implies that the list of foods absorbed must be carefully checked as even a minute amount of gluten or casein may be enough to counteract any progress. Some people may find the diet difficult to cope with at first, as gluten and casein are reported to be addictive, and it often means a drastic change of life. "

Share this post


Link to post
Share on other sites

Judy,

I'm sorry you are not feeling well and are struggling. I've read others' responses and hopefully they can provide you with some insight.

I don't know much about other food allergy/intolerances, but here is what I thought of:

I remember after going gluten-free, that I still felt sick a lot after meals. I think it was because my intestines were still damaged. Also, even now, if I get an accidental "glutening" I won't feel normal for 1-2 weeks.

Also, is there any risk of cross-contamination? That was a hidden culprit for me at one point-I was eating "safe" foods but still getting sick bc of cc.

Hope that whatever it is, you find some answers and continue to get better.

Laura :)

Share this post


Link to post
Share on other sites
Judy,

I'm sorry you are not feeling well and are struggling.  I've read others' responses and hopefully they can provide you with some insight.

I don't know much about other food allergy/intolerances, but here is what I thought of:

I remember after going gluten-free, that I still felt sick a lot after meals.  I think it was because my intestines were still damaged.  Also, even now, if I get an accidental "glutening" I won't feel normal for 1-2 weeks.

Also, is there any risk of cross-contamination? That was a hidden culprit for me at one point-I was eating "safe" foods but still getting sick bc of cc.

Hope that whatever it is, you find some answers and continue to get better.

Laura  :)

<{POST_SNAPBACK}>

Wow I'm just overwhelmed with the kind responces. I stayed off off the computer this after noon and went to bed....The rest did me alot of good:) :)

I'm going to print this thread and have it to refer to. There have been so many suggestions and all seem valid to me.

I thought that going into my 18th week of being gluten-free I could start adding to my list but from your posts....GUESS NOT.

I've seen Ghee on here but didn't know what it was???

8 months to get all that out of your system...good grief...but again, makes sence since I've been posioning my body for at least 20 years....IBS HA---didn't even know there was a celiac disease.

Again, Thank you all. I feel so blessed to have found this forum...

If i didn't respond to all of you individually, please forgive as i just feel so UCKY don't have the energy or clear 'brain' to write.

Still new to how the threads work. I hope each of you who took the time to write to me will get this.

Judy in Philly

Share this post


Link to post
Share on other sites
Thanks Carie

I'm thinking the same thing, even tho i hate the thought i hate to feel this way even more!!! I have given up milk & ice cream..still eating real butter which doesn't seem to bother me...but think it's the cheese...Does the land of lakes butter have casein in it? I had just started adding things like the bakery rolls, pizza etc the last 2 weeks. Still confused re: casein as i bought the rice cheese and saw it had casein so threw it out....I've read all the posts re: casein & lactose & milk on the forum but still just pain confused so guess...when in doub...leave it out is true. Just wanted to start adding a variety of new things so guess it's back to 'the basics' thanks again for your time and expertice. Judy

Casein is in everything dairy. Most lactose free products have casein in them and most margerines have whey in them. The best thing to do if you are going to try this, is avoid all dairy products and read ingredients on everything else. Whey is one term that you have to watch out for in ingredients lists. For dairy replacements, I drink orange juice fortified with calcium, I have So Good Soy Products, and have Earth Balance "butter" http://www.earthbalance.net/product.html

Share this post


Link to post
Share on other sites
Casein is in everything dairy. Most lactose free products have casein in them and most margerines have whey in them. The best thing to do if you are going to try this, is avoid all dairy products and read ingredients on everything else. Whey is one term that you have to watch out for in ingredients lists. For dairy replacements, I drink orange juice fortified with calcium, I have So Good Soy Products, and have Earth Balance "butter" http://www.earthbalance.net/product.html

<{POST_SNAPBACK}>

Carrie

sent you a reply and went to send and computer didn't send i guess.

ck'ed out the site.

question. since it's dairy free doesn't have to list casein free?

Do I get at a health food store? Does it taste like butter:)

Judy

Share this post


Link to post
Share on other sites
Sounds like it could be a number of things. Eggs, yeast, sugars, old food, cheese, who knows?!?!! My suggestion would be that you take things back to square one and begin adding foods. Go back to plain and simple and add in a few things at a time to test how they make you feel. Keep a food diary and keep track of how much you eat, when you ate it, how you felt etc. This should help you find your culprit!!  :ph34r: 

Good luck and hope you get to feeling better soon!

-Jessica :rolleyes:

<{POST_SNAPBACK}>

Jessica has about said it all Yeast or eggs definitely could be easily be the culprit.

I would, as she has said, go back to square one but be sure to give yourself at least a week on a diet of foods that you know are safe. You need to stablize your tummy before you start tempting it to rebel. Claire

Share this post


Link to post
Share on other sites
Jessica has about said it all  Yeast or eggs definitely could be easily be the culprit.

I would, as she has said, go back to square one but be sure to give yourself at least a week on a diet of foods that you know are safe. You need to stablize your tummy before you start tempting it to rebel.    Claire

<{POST_SNAPBACK}>

Good Morning--I'm still alive and feeling so much better!!!!!

Jessica and Claire--It will be hard with company coming for the week but will sure give the 'back to sq one' eating.

Claire--When I'm sick like that the only thing that settles my stomach is eggs. I had 2 poched eggs yesterday with some enGer white rice loaf bread. I ck'd the ingredients and it had yeast too but i'm leaning toward the yeast in the "K" bread.

Also it was old and another suggestion was sugar as i don't eat sugar unless in a product...

Anyway...think i'll go back to the brown rice bread and this new EnGer bread.

Thanks again for all the info. I know i can get better with the SQ one and food diary.

Judy

Share this post


Link to post
Share on other sites
question. since it's dairy free doesn't have to list casein free?

Do I get at a health food store? Does it taste like butter:)

The butter is casein free but just double check ingredients to make sure (sometimes companies can change ingredients). And it does taste like butter! I buy Earth Balance butter in the health food section of my local grocery store.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...