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

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


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.

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.

Rikki Tikki Explorer

Stinger:

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

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!

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

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.


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.

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.

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.

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

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...

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!!

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!!!!

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.

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.

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.

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!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.