Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

Mother of Jibril Enthusiast

Wow... thanks for that note about Bob's Red Mill. It's great that they're trying to get up to speed and produce reliable products... but I'm one of those people who can't handle corn :( No wonder I was having problems with products that appeared to be "safe."


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 477
  • Created
  • Last Reply
num1habsfan Rising Star

Can't believe it...took me 3 days to tolerate anything at all in my stomach after that glutening earlier in the week. Ugh. Stomach pain is sstill BAD!!

For some reason the DH breakout is maybe the worst its ever been. It's taking over my foot...and driving me nuts. The hands are bad enough, at least those I can scratch if I'm sitting in class or something. But the foot? Blah.

aliciatakescare Newbie

I am extra sensitive celiac patient myself. I cannot eat things produced on common equipment or anything of the sort. Any tiny tiny cross contamination sends me in a spiral of pain, migraine, nausea, vomiting and of course the diarrhea -- all of which are lasting a minimum of 2 days. I have become very diligent about making sure my dishes/pots/pans/etc are all washed, dried and put away by me. i am also finding that it is necessary to wash all my laundry including my own towels/wash clothes separate as well. i also have to wash out the bath tub before bathing each and every time. I have had to change my vitamins and mineral supplements.

i have also found that i become dehydrated and anemic if i do not take these supplements and this has become a terrible problem, worsening with each "glutening".

i have experimented with many types of noodles and the ones i like the most are "Notta Pasta" rice noodles or Tai Rice Noodles - great texture AND taste. i am finding that using grape seed oil is the best type of oil for me to tolerate. the gluten free cupboard also has great tasting brownies. kinnikikwik is the best bread and pancake mixes i have found. I make everything else pretty much homemade and i only eat at friends' houses who take my issue seriously, otherwise i eat at home.

JNBunnie1 Community Regular
Does anyone have a 2 lb. bread machine mix or recipe that they use that is free of dairy, soy and corn? I tried Pamela's and my body is telling me that it's got a little soy in there so I was hoping someone had another suggestion. I have a few nut based breads but was looking for rice, sorghum, bean, etc.

Try this one:

Open Original Shared Link

About two thirds of the way down is "Gluten free bread that just might make you cry". It's an eventual bastardization of Lorka's bread from this forum. I tworks GREAT in my breadmaker. I use all sorghum instead of rice flour though, I don't like using rice flour. I also use less xanthan gum, but that's after some experimentaion, so you do your thing.

lizard00 Enthusiast

I have to tell you guys about this dream. I know you are among the few that will understand...

I dreamed about pizza last night!! LOL :lol::lol::lol:

Recently, we went from having nowhere to get gluten-free pizza, to 5 locations now serving gluten-free pizza. In my dream, I was watching one of the places make my pizza, and then they grabbed a handful of regular flour and put it on my crust. And of course I flipped out, and told them they were harming people, and they didn't understand why I wouldn't eat their pizza.

So, we went to the next place, and I had my yummy pizza. I didn't want to get up this morning because of my pizza dream.

How sad is that??? :lol::lol::lol:

I'm sure I've never dreamed about food before...

jerseyangel Proficient

:lol: Liz, you're right--we can all relate!! :D

I've had a few dreams about food since this started--in all cases, I have eaten things I shouldn't and then wake up in a panic. :P

oceangirl Collaborator

Hi.

I just saw this thread and thought I'd throw in my two super-sensitive cents. I, too, react to a molecule of gluten and could not believe this would be possible when first diagnosed. In fact, when told that some had that reaction I think I said something like, "Yeah, RIGHT." Well almost 4 years later I've learned the hard way that I am ultra-sensitive.

I also spent 2 years gluten, soy, corn, egg, legume, nightshade and dairy free. Everything seemed to bother me. Now I am mostly well (although currently suffering through a random glutening from what source I cannot determine- I think it's in the bloody air sometimes.) I am still gluten, soy and legume free but am fine with dairy and eat eggs when cooked in something. I have had some corn and I THINK it's okay, but I'm not positive.

I think I am similar to Patti; whenever she has advised me over these years, she's been right. I am beyond grateful for her posts. And many others as well! I cook everything myself or my partner Michael cooks. My sister has bought new pans for me and is very serious about the diet so I trust her as well but sadly, cannot trust my Mom (even though she tries and is an amazing French cook, but her pans! And she doesn't understand the extenuating circumstances involved in this disease!)

I, too, have things sitting in my cupboard I've dared to buy (like quinoa) but haven't dared yet to try. Food scares me. The reaction is so painful- the left side pain, bone pain, more C than D and the feeling someone poured cement into my distended system. Mouth sores, joint and hip pain and feeling depressed and "fuzzy" all add to the festivities when gluten is around.

I cannot stress enough to those who are new the value of keeping a detailed food log. I have had one for 3 years and it has helped me so much!

Thank you, Patti, for starting this thread.

lisa


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mike M Rookie

Another FYI...Tested Wendy's Fries, Chocolate Frosty and Chili.....I asked and they do (at this Wendy's) use a dedicated "fries" only fryer.......

I think it was on this sensitive thread that I was reading about fast food fries? anyway......I tested Wendy's French Fries and Chocolate Shake and they tested totally negative for gluten....The Chili had an ever so slight positive, so it is somewhere around 10 parts per million or less. I did not eat the chili, but did eat the fries and the frosty and can report no symptoms at all and I am hypersensitive. Matter of fact I went back today and got another frosty. Not saying it is healthy food but in a pinch on the road, it will do. All the best, Mike

jerseyangel Proficient
Hi.

I just saw this thread and thought I'd throw in my two super-sensitive cents.

Hi Lisa :D

I'm so glad you posted! It seems we super sensitives have so much in common :(

Gosh, I remember when I first went gluten-free, I also didn't believe that such a minute amount of gluten would be a problem for me. I checked my foods, but looking back I was lax about cross contamination and I didn't give my topical products a second thought. How wrong I was :lol:

Keeping a log is such a valuable thing to do, I think. I still do it when I get a mystery reaction that persists.

Did you determine that the puppy treats are the culprit, or are you still searching? I hope whatever it is, you feel better soon ;)

oceangirl Collaborator

Hi Patti,

I did switch to low-gluten puppy treats (can't find gluten-free yet) and still am feeling a little "reacty" so I'm not sure. It could just be from the initial reaction. I am feeling a little desperate and angry- it never seems obvious to me! That's why I am so scared to put anything in my mouth or on my face without conducting doctoral level research on it first!

Thanks for asking and take good care,

lisa

P.S. Your new picture is very nice.

jerseyangel Proficient
That's why I am so scared to put anything in my mouth or on my face without conducting doctoral level research on it first!

I hear ya! That gets so tiring <_<

dilettantesteph Collaborator

I thought I'd be best off posting this here so Momma Goose won't give me flack for using the home gluten test.

I decided that I should order a bunch of whole grains and grind them into flour myself. I figured there would be less of a chance of cross contamination that way. Also those bread mixes don't have much whole grain in them.

My order from Purcell Mountain Farms came yesterday and I was excited to get cooking. The first package I opened, amaranth, came out positive for gluten with that home test kit. I imagine it was below 20 ppm, so legal, but too high for us. Come on, how much processing could it have had, contaminated already?? It wasn't cheap either. They will give me money back on what I send back, but with paying shipping both ways, I am still out a lot of money.

Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

jerseyangel Proficient
Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

I know I do. I have gotten to the point where I don't eat many grains since I seem to do better without them. However, when I do use flours, etc, I stick to Ener-g which is also dedicated.

oceangirl Collaborator

Hi again,

I've been using Glutino rice flour to make some shortbread cookies with homemade jam when I want a treat and I THINK this company is okay. IS it dedicated? Thoughts, anyone? The type I use is just plain rice flour.

I,too, eat almost no grains so don't do the substitutions.

Thank you!

lisa

Mike M Rookie
I thought I'd be best off posting this here so Momma Goose won't give me flack for using the home gluten test.

I decided that I should order a bunch of whole grains and grind them into flour myself. I figured there would be less of a chance of cross contamination that way. Also those bread mixes don't have much whole grain in them.

My order from Purcell Mountain Farms came yesterday and I was excited to get cooking. The first package I opened, amaranth, came out positive for gluten with that home test kit. I imagine it was below 20 ppm, so legal, but too high for us. Come on, how much processing could it have had, contaminated already?? It wasn't cheap either. They will give me money back on what I send back, but with paying shipping both ways, I am still out a lot of money.

Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

I feel your pain!!! Oh that is rich!!!!! If the nay sayers would just step back for just a minute and think about what the ability to test is really doing for ALL of us, I think they would humbly get on board. Think about it, in the past we (the consumer) had no way to hold these food/health manufactures feet to the fire and keep them honest. Besides, not even they had a good way to check the product they are producing and claiming to be gluten free. Not anymore, a lot of them and more and more will be testing and checking the product they are producing and we too can check the product. This is called checks and balance and will and is making it better for us all!!!!

Mike M Rookie

Gluten free Dog treats for those of us who are very sensitive and don't want to be handling other treats.....I have tested and use PLATO dog treats. The chicken and salmon strips tested negative several times now. Here is the web address. www.platopettreats.com I buy them at our local health food store. Hope this helps, Mike

jerseyangel Proficient

Lisa--about Glutino. They are a dedicated company and many, many people here report enjoying their products with no problems. I've never used their flours but for some reason their crackers make me ill. I'm ok with all the ingredients, so I really don't know what the problem is with them for me.

So many times things that "should" be absolutely fine cause me to react. There sometimes doesn't seem to be any rhyme or reason to it. Even too much of something processed in a gluten-free facility that I'm normally fine with can sometimes cause trouble, although I feel that goes back to grains for me and to a lesser extent, sugar.

happygirl Collaborator

Oceangirl - there are a few gluten free dog treats at the pet store that I've seen. I'll share them when I go next time and see if you have the same brands near you.

Patti - I do fine with Glutino, but there are other gluten-free companies that I do not tolerate. I don't know what it is, because it doesn't seem like gluten, but one of the companies that people love (K) get me....I just can't eat them.

Stupid, stupid, stupid sensitivity!

oceangirl Collaborator

Thank you everyone! Patti, it's interesting what you say about Glutino because I was eating my special cookies when the recent glutening happened. And I completely agree about amount of grain consumption. I can eat Tinkyada with no problem but not for days and days in a row.

So, maybe I just had too many days in a row with a cookie. Bummers. I will look for Plato's, Mike- thanks.

lisa

Fiddle-Faddle Community Regular
Gluten free Dog treats for those of us who are very sensitive and don't want to be handling other treats.....I have tested and use PLATO dog treats. The chicken and salmon strips tested negative several times now. Here is the web address. www.platopettreats.com I buy them at our local health food store. Hope this helps, Mike

Most dogs respond beautifully to nuggets of their (gluten-free) kibble being kept in the treat jar and used as treats. They really don't seem to care WHAT the treat is as long as it's edible.

Somehow, the manufacturers have convinced us that dogs need treats that are packaged differently from their regular food...

Jestgar Rising Star
Most dogs respond beautifully to nuggets of their (gluten-free) kibble being kept in the treat jar and used as treats. They really don't seem to care WHAT the treat is as long as it's edible.

:lol: :lol:

I have a second bag of a different brand of cat food. When the kitties are begging, they get a few of those crunchies. They are delighted at getting a treat! :lol: :lol:

New2008 Newbie
Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

Very true. Most people don't understand how serious this is and how sick we can get. I am struggling with that now regarding my employer. They just say well if you are allergic to it don't eat it....well true enough but sometimes we don't know we are eating it.

New2008 Newbie
Bad days, and I try not to dwell on them, but I did feel like the odd one out to start with.

It seemed to take me forever to get to where I am now, three years later. But I still feel I haven't quite got to where I want to be. I have had glimpses of what I want to be, bright and bubbly, but invariably I'm still stuck in my cocoon, and not as outgoing as I feel I should be. I'm very careful, and I get glutened occasionally, but more often than I would like.

The lucky ones can go onto a gluten free diet and from day one their symptoms are gone and they appear to be fine. That upset me the first few months. I tried very hard to be gluten-free, I made mistakes, and at times I had made mistakes when I couldn't even track back to where I had been glutened. I felt like a failure and I must have been doing the diet wrong and making big mistakes, as I just wasn't getting anywhere fast for a good year. I have given away soy and I just try to eat simply and healthily. When eating like this it is easy to track down the offending culprit. It makes a big difference, but there is still something I am missing. Corn?

The next thing I will have to do, is convert my whole house to a gluten-free zone. That is a big wish that is not going to happen anytime soon.

Cathy

Cathy,

Don't feel bad I am in the same boat as you. It is a uphill battle and at times I get mad that I have this. I get depressed and feel alone, however, I read the posts on this site and it helps me to feel better and to understand that I am not alone. I make mistakes in my diet and others do to.

I also feel as if there is still something missing and corn is what I thought too. Really, if I eat a meat and veggie diet I feel great but I have trouble staying on that type of diet. When do you feel your best?

Angie

Del Rookie

Sure am glad to read that I'm not the only one that's struggled with this horrible disease....I keep reading about all the people that have felt so much better in just days or weeks after going gluten-free...that can get VERY discouraging!!! I've been gluten-free for nineteen months and everyday is a struggle!! At the beginning of this year I definitely wasn't where I wanted to be but I could look back and see how much I'd improved.....the I got the flu....now it seems I'm back to square one....maybe two.

I do have a question....my pain has always been on the left side now after nineteen months I awoke this morning with NO pain in my left side but now it's on my right side.....has anyone else had this happen. (I'm not talking about a horrible pain, just a tiny, nagging pain.)

Del

oceangirl Collaborator

Del,

I haven't exactly had that happen (my big, bad pain is always INTENSE on my left side and in my left hip bone.) But, if you just had the flu that could be impacting you. And, when glutened, I can have random pains all through my abdomen. In fact, I get this type of more what I call "IBSish" reaction just to too much roughage or too much of some kind of food like dates or something.

Did you take antibiotics when you had the flu? That could screw up you intestines.

Hmmmm... hope you feel better soon!

lisa

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,877
    • Most Online (within 30 mins)
      7,748

    Sasha bul
    Newest Member
    Sasha bul
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...