Jump to content
  • 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

There Is Hope!


tictax707

Recommended Posts

tictax707 Apprentice

A while back someone posted about their *best* experiences or something to that effect. I tried to dig it up to add, but couldn't find it so I am just starting anew. Yesterday (4th of July) I had, hands down, the best, happiest, safest experiences I have had at a social gathering since my diagnosis 8 years ago. Granted I had the odds in my favor - the hosts were well aware of the seriousness of 1) my disease and 2) allergies in general as one has a shellfish allergy. Appetizers consisted of new bags of chips and salsa (read all ingredient labels), and this amazing avocado bean dip with black beans, tomatoes, avocados & bell peppers, all freshly prepared with clean utensils (I watched), hummus with veggies ONLY - not a pita in sight!, pulled pork cooked on a freshly cleaned and super scrubbed grill - no seasonings , no marinades. Dessert was fruit with my gluten free/dairy free chocolate chip cookies. Everything was extremely delicious. Everyone thought so. I could finally, FINALLY, FINALLY, eat FREELY. AND it was NOT a big deal - gluten came up in social conversation once, for exactly 25 seconds. (I had of course spoken with the hosts in depth beforehand, but because we have been friends for a while they kind of already know the deal already). Today, I feel FANTASTIC, except for the fact I am still pretty full.

I WAS NORMAL!!!!!

(I am almost crying with joy). :D


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Thank you for posting. I am so happy for you. I hope someday the posts relating experiences like yours will outnumber the ones of clueless people trying to feed us poison. We can hope anyway. :D

AlysounRI Contributor

I work at a library where many research fellows come through.

When most of them leave they bring treats for the staff to thank them for their help.

Most of the time, I can't eat any of them as you might expect.

Last week or so, one of the long term fellows left and brought in a carvel ice cream cake, with me in mind, thinking that I would be able to eat it along with everyone else. Her heart was in the right place. Sadly, I could not eat it because it had those little crunchy things in it that were made with wheat. But I was quite touched and thanked her very much before she left.

I am so thrilled that you had such a great experience!!

I can imagine how it might want to make you cry!!!

I am very happy for you :)

~Allison

i-geek Rookie

These moments are amazing, aren't they? :D

My sister-in-law is getting married later this month, and my husband's aunt and uncle threw a wedding shower for her and her fiance last month. The uncle has DH and has been gluten-free since last fall. All of the food save one dessert was gluten-free. It was wonderful to eat whatever I wanted from the table and not get sick later or feel like a weirdo asking about every little thing.

sandsurfgirl Collaborator

My family is so great about it. My dad forgot to save a piece of tri tip for me without marinade and the marinade had gluten. They defrosted chicken breast and found gluten free seasoning to put on it. I had to convince him to cook it on the clean part of the grill because he was so afraid of contaminating it! He was begging me just to cook it in the kitchen but there was a nice big spot on the grill that was clean and far from the meat so he relented and grilled it for me. The BBQ sauce was gluten free but he made sure to use a separate spoon to put it on the chicken in case it touched the glutenous tri tip.

kitgordon Explorer

My family is wonderful about it, also. I am the latest to develop symptoms and go gluten-free. My Mom, Grandmother, an aunt, two uncles and two cousins have all either been diagnosed with celiac or diagnosed themselves - so they kind of broke in all the gluten-eating family members for me, so our gatherings are usually pretty safe. I wonder if we hold some kind of record for most celiacs in one family.

torimuse Rookie

I think I've gotten lucky to have such wonderful experiences so early on. Hopefully it's a sign that times are changing and CC is on its merry way to becoming a thing of the past, even though that day probably won't be in any of our lifetimes...but we can hope.

I finally broke the news about being gluten free to my parents about three weeks ago, myself only knowing for 4 or 5. They're still learning, and, bless her heart, my mom takes forever to get the hang of anything new, and she's always done all the shopping for the family.

I went to visit them a couple days ago, and was very worried about eating when I didn't have the staples I do here at home directly available. However, lo and behold, on the table they keep cereal on was a box of Cinnamon Chex (which I KNOW they don't eat), with its big, emboldened letters spelling out the magical words of "Gluten Free". She also had a big box of white rice in the cupboard. Later that night, she even treated me to dinner at PF Changs, and got a gluten free appetizer (the amazingly yummy chicken lettuce wraps) for us to split.

In addition, I'm moving back out to Omaha, and I told my new roommate a week ago that we'd need to gluten-proof part of the kitchen for me. She responded by searching the internet for any information she could about living with a gluten-free person and is in the process of clearing half of every cupboard so that I can store my own stuff without fear of CC.

She's shown me exactly where she keeps her one teflon griddle, and where the wood cutting board hides, so that I can avoid them like the plague. Her all-purpose flour (which is only rarely used) is in a very sealed container and being regulated to the highest and furthest corner of the shelves. She even said that once I can afford rice flour (a gluten-free friend found a great flour substitute recipe), she's considering giving the wheat flour to her boyfriend to get it out of the house entirely, and she'll use the substitute for her own cooking.

She's also in the process of eating as much of her glutenous food as she can before I move in, and she'll probably end up on cutting back on glutens herself just so that I can avoid the risk having it in the kitchen brings.

I didn't expect the half of this out of her, or my parents, and the overwhelming support touches me very deeply.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.