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 Celiac.com!
    eNewsletter
    Donate

Help Please (boy I Need A Lot Of It)


STINGER

Recommended Posts

STINGER Newbie

OK I HAVE WRITTEN BEFORE (IN ANOTHER POSTING) THAT MY FRIEND HAS BEEN DIAGNOSED EARLIER THIS WEEK, SHE IS MY BEST FRIEND AND I HAVE BEEN POURING OVER WEB SITES AND BOOKS AND STUFF (PRETTY MUCH ANYTHING I CAN GET MY HANDS ON) WE WENT TO THE SUPER MARKET TO SEE WHAT THEY HAD SHE WOULD BE ABLE TO EAT, AND I THINK WE ARE GOING TO GO BLIND FROM READING THE TINY LABELS, WE ALSO WENT TO THE HEALTHFOOD STORE, WHERE SHE DID GET A FEW THINGS TO TRY. SHE ORDERED A FEW THINGS ON LINE, AND I PRINTED A BUNCH OF RECEIPES AND MADE HER A COOKBOOK OF HER VERY OWN, SO I CAN MAKE STUFF OUT OF THERE. I WOULD GREATLY APPRECIATE ANYONE E-MAILING ME ANY GREAT RECIPES THEY HAVE AND ENJOY. I WOULD ALSO LIKE TO KNOW ABOUT THE THINGS I CAN DO IN THE KITCHEN TO PREVENT CROSS CONTAMINATING ANYTHING I MAKE FOR HER. ALSO I WOULD LOVE TO HEAR ABOUT ANYONES SUGGESTIONS OF THINGS WE MAY NOT KNOW ABOUT YET, THOSE LITLE THINGS WE TAKE FOR GRANTED THAT WE MAY USE EVERYDAY WHICH MAY CONTAIN GLUTEN THAT WE DON'T EVEN KNOW ABOUT. :unsure: I WOULD HATE TO BE RESPONSIBLE FOR SENDING HER BACK TO THE HOSPITAL ACCIDENTALY.....OH THE GUILT. :huh: I'M SURE SHE WOULD APPRECIATE ANYONE'S FUNNY STORIES ALSO, SHE HAS A GREAT SENSE OF HUMOR AND BELIEVE IT OR NOT HAS KEPT A SUNNY DISPOSITION THROUGH THIS VERY TRYING TIME. :D THANK YOU FOR ANY HELP YOU MAY BE ABLE TO PROVIDE, I CAN'T SAY ENOUGH HOW IT WOULD BE APPRECIATED........CHELE

STINGERKILLS@AOL.COM

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Stinger, first, meat, chicken, fish, eggs, veggies, fruit, nuts, seeds, potatoes and rice are all naturally gluten-free as long as you're buying the natural stuff and not pre-packaged stuff. She will probably heal faster sticking to eating these food items.

As she gets used to the diet, she might want to add in a gluten-free replacement of an old favorite. There are many out there available at both health food stores and mainstream groceries.

Watch out for toasters (she needs her own), plastic colandars, scratched non-stick cookware, wooden spoons and crumbs on the counter. If you're willing, it would be easiest for your kitchen at home to be gluten-free, but many have a "mixed" kitchen. It's just harder that way. Oh, if you grill on a charcoal grill, you need natural charcoal, regular is not gluten-free. And be sure anything that was previously on the grill gets burned off. If there are non-gluten-free items being grilled, use different utensils.

Link to comment
Share on other sites
AndreaB Contributor

Stinger,

She needs to watch out for personal care products also. Shampoo/Conditioner, soap, toothpaste etc. Also some paper products have gluten in them. I still need to check on the ones I have.

Are there any particular foods that she likes. I am a former vegan and have recipes posted in the recipe section for cashew cheese, almond mayo, ranch dressing, sour cream. If she is dairy free those would help out a lot.

Link to comment
Share on other sites
Rikki Tikki Explorer

Stinger:

I just wanted to say that you must be a great friend! :D

Link to comment
Share on other sites
Canadian Karen Community Regular
Stinger:

I just wanted to say that you must be a great friend! :D

I was thinking that too Carla! What a wonderful friend! She is very lucky!

Link to comment
Share on other sites
jenvan Collaborator

You are a great friend :) Do you have these safe/forbidden ingredient lists to help for shopping? https://www.celiac.com/st_main.html?p_catid=12

Link to comment
Share on other sites
STINGER Newbie

THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



jenvan Collaborator
THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.

Link to comment
Share on other sites
STINGER Newbie
That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.

THANK YOU SO MUCH, I'M SURE WE WILL GET USED TO THIS EVENTUALLY, IT WILL JUST TAKE SOME TIME. I WAS WONDERING WHEN BAKING IF THINGS RISE LIKE THEY DO WITH REGULAR FLOUR, BECAUSE SHE BOUGHT A PANCAKE MIX AND THEY DIDN'T SEEM AS FLUFFY AS THE REGULAR ONES.

Link to comment
Share on other sites
jenvan Collaborator
THANK YOU SO MUCH, I'M SURE WE WILL GET USED TO THIS EVENTUALLY, IT WILL JUST TAKE SOME TIME. I WAS WONDERING WHEN BAKING IF THINGS RISE LIKE THEY DO WITH REGULAR FLOUR, BECAUSE SHE BOUGHT A PANCAKE MIX AND THEY DIDN'T SEEM AS FLUFFY AS THE REGULAR ONES.

You will notice a difference in many of the products and most of the breads, cakes aren't as fluffy or light. You will have to experiement and try different ones to see what you like best. There are some really good mixes and recipes out there, so tell your friend to be patient and she will find some she will enjoy.

Link to comment
Share on other sites
taz sharratt Enthusiast

:D:D

That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.

sorry jenvan i havent read the replys on this but had to reply to you, you have changed your photo and its nice to see you properly. dont worry im a girl youve given some good advice that i thought it would be nice to see yoy and say something. :D:D

Link to comment
Share on other sites
jenvan Collaborator
:D:D

sorry jenvan i havent read the replys on this but had to reply to you, you have changed your photo and its nice to see you properly. dont worry im a girl youve given some good advice that i thought it would be nice to see yoy and say something. :D:D

Thanks Taz--that is very sweet of you! :) Think you'll ever brave putting up a picture? It is fun to put faces to all the names...

Link to comment
Share on other sites
CarlaB Enthusiast
Thanks Taz--that is very sweet of you! :) Think you'll ever brave putting up a picture? It is fun to put faces to all the names...

Yea, Taz, I agree, I'd like to see a picture, too!!

Link to comment
Share on other sites
tiffjake Enthusiast

Stinger! Nice to meet ya! Watch out for condiments! Like Soy sause (and teryaki sause) because they have WHEAT in them many times. I learned that the hard way! La Choy is a gluten-free soy sauce! Other than that, sounds like you are doing great, and I second what everyone else mentioned! You ARE a great friend!!!!

Link to comment
Share on other sites
debmidge Rising Star
THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

That's the $20 million question. Many have ran that same question thru their minds and no one really knows for sure why this happens. Hopefully it's changing now.

Link to comment
Share on other sites
STINGER Newbie

THANK YOU ALL, I APPRECIATE ALL OF THE NICE COMMENTS, AND ALL OF YOUR HELP. I'M JUST PARANOID ABOUT ACCIDENTALLY POISONING HER. AND GEE WE NEVER THOUGHT ABOUT HAVING HER OWN TOASTER AND STUFF LIKE THAT, WE MADE A SPECIAL TRIP TO GET HER OWN KITCHEN IMPLIMENTS, AND BATH PRODUCTS. SHE WAS NONE TOO HAPPY ABOUT THE MAKEUP, AND SHE ISN'T REAL HAPPY ABOUT THE CHANGING LIPSTICK COLORS, SHE HAS GOTTEN PRETTY ATTACHED TO CERTAIN THINGS. BUT WE MADE A JOKE ABOUT IT AND MOVED ON.

Link to comment
Share on other sites
i canary Rookie
THANK YOU ALL, I APPRECIATE ALL OF THE NICE COMMENTS, AND ALL OF YOUR HELP. I'M JUST PARANOID ABOUT ACCIDENTALLY POISONING HER. AND GEE WE NEVER THOUGHT ABOUT HAVING HER OWN TOASTER AND STUFF LIKE THAT, WE MADE A SPECIAL TRIP TO GET HER OWN KITCHEN IMPLIMENTS, AND BATH PRODUCTS. SHE WAS NONE TOO HAPPY ABOUT THE MAKEUP, AND SHE ISN'T REAL HAPPY ABOUT THE CHANGING LIPSTICK COLORS, SHE HAS GOTTEN PRETTY ATTACHED TO CERTAIN THINGS. BUT WE MADE A JOKE ABOUT IT AND MOVED ON.

Another thing to watch - her medication. Some prescriptions and over-the-counter drugs have gluten. A good website to check out is www.glutenfreedrugs.com.

Joking is good. If your friend is anything like me - humor helps a lot.

Link to comment
Share on other sites
amybeth Enthusiast

Cross contamination -- grrrrrrr.

I live about 20 min. from my folks, so I stop by often. They keep a separate gluten-free butter, peanut butter, and mayo at the house, so I can use them if I need to. That way, there's no crumbs leftover to "get" me!

Tinkyada Rice Pasta is the best I've tried and kinnikinnick sandwich bread is great. If you live near a Whole Foods grocery, they have a freezer for gluten-free bakery items that are prepared in a gluten-free facility. They also carry many gluten-free items. Wegmans Markets has a significant natural foods section and also they will clearly label - with an orange circle and "G" any Wegman's Brand items that are gluten-free. They also carry a lot in their international foods aisle! Trader Joe's also has a pretty significant list of gluten-free items.

Good luck!

Link to comment
Share on other sites

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. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...