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

Newly Diagnosed-- Head Still Spinning!


queenofhearts

Recommended Posts

queenofhearts Explorer

Hello folks,

I'm very glad to have found this forum! I was diagnosed this week with Celiac. I'll be fifty years old next week & have had nagging symptoms for many years-- diarrhea, anemia, fatigue, migraines, heavy periods, joint pain-- but never connected the dots until this winter I had a check-up that showed elevated liver enzymes. After a retest that showed no improvement, my doctor ordered a cat scan & when nothing explanatory showed up on that referred me to a specialist. The specialist took one look at my list of symptoms & suspected Celiac immediately. Biopsy confirmed it, so here I go into Gluten-Free World! At first I was horrified at the thought of no wheat because I absolutely love to bake, but after checking out 8 gluten-free cookbooks & trying a dozen recipes or so, I think I'll survive after all! The prospect of actually feeling well again is almost hard to believe, but I'll be very happy if it works!

My most immediate issue is eating out-- next week I'll be celebrating both birthday & wedding anniversary, & frankly I'd rather have someone else do the cooking! Any tips on how to stay safe at a restaurant?

Many thanks for being here!

Leah


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Welcome to the forum, but sorry that you have been diagnosed with Celiac. This is all doable. I eat out about 3 times a month and I have multiple food allergies to boot. There are several National chains with gluten-free menu's, but if you want something special, then pick your restarurant and call a few days before and talk to the manager. If he sounds like DUH, then pick another and call them. I have even eaten at Famous Sam's locally for lunch and the manager there knew all about Celiac and gluten. He was not going to be in the day we came and he left a detailed list with the mgr. that was going to be on. They cleaned a section of grill for me and even used a clean spatula. I never got sick. You have to stress the cross contamination issue. Enjoy your birthday and Anniversary.

Smunkeemom Enthusiast

If you have a restruant in mind, go a few days before hand and just look at the menu, think about what you might be able to eat there, then talk to the manager. I like to go right after lunch rush (about 2-3p) when they are slow, and sit down and talk to the manager. I tell them when I will be coming, and what I would like to eat, it gives them time to find out if they can make it gluten free for me. It's important to stress to them that even a crumb can make you sick. Usually they will go out of their way to accomodate you, there is one local restruant that even has special pans and utensils that are only for their celiac customers. I wouldn't expect that everywhere, but they will most places clean off a section of the grill and stuff like that, but only if you ask, and it's more likely to happen if you ask well in advance (a day or two) so they can brief the chef on duty.

Lisa Mentor

Leah:

Hello and Welcome here. I ha ve been doing this since last August. I can assure you this this is the best place to come with all your questions. I totally, would have been at a loss here without this site.

I am one year older than you, so we have similar issues in common, although, I am way passed the lady issues.

It truely is overwhelming in the beginning, but this too will pass. I would suggest that you read here on the posts as much as you can and keep a notebook by your computer. Write down products that you see are safe and questions that you may need to ask.

"Nini" , her post name, has a beginner list that would be wonderful for you to start with. She is one of our champions for the "newbees".

It truely does get better, and you will feel better as long as you stay gluten free. Please remember to check your shampoo, bath soap, toothpaste. lipstick....anything that can get into your mouth.

This is a very soft space to come. And, always, there are no stupid questions here, so ask away.

If you need beginner products, just list them, and we will name them as safe of not.

It will settle down, but the learning process begins now...Ask and we'll help. Lisa

queenofhearts Explorer

Thank you all so much for great suggestions & moral support! I feel less lost already. What a wonderful group!

I never would have thought to go into the restaurant a day or two ahead of time, but that is a great idea-- that way when it comes to the actual meal I won't be so stressed out, nor will the chef, I hope.

Lipstick & toothpaste & soap, oh my! So much to keep track of! Does anyone happen to know if CoverGirl Outlast lipstick is safe? Colgate toothpaste? Neutrogena shampoo? Dove soap?

I'm so grateful that you all are here-- it's all so new & strange, but with such wise & generous guides I feel much less anxious & confused.

Many thanks,

Leah

Lisa Mentor

Leah:

You're on a good start already. I didn't mean to get you freaked out.

Here's a start: Gluten Free

Dove Shampoo, Pantene, Vidal Sassoon and others Neutrog. Shampoo.

Dove Soap, Ivory, Carress, Dial

All Crest toothpaste, Arm & Hammer, Colgate (Ithingk)

Neutrog. most make-up and lip sticks and glosses, soaps

If you have a product of Neutrog. check the website on the package and write them, and they will send the the long list of their gluten free products.

Cover Girl lipstick are very tricky, as for me....some yes, some not. That's a pain. Alot of people use Basic Essentials, that are not available for me here.

Search here for Cosmetics, you will find more than I can give you now.

It will alll work out, and in a months time, you'll be an expert.

Hang in there, Lisa

queenofhearts Explorer

Oh, Lisa, don't worry about freaking me out! It's just that there's so much new information to absorb. This is very helpful; ignorance in this case is definitely NOT bliss. I want to know ALL the sneaky stuff from the get-go! I'd be much more freaked out if after months of living without real sourdough bread & all the other baddie-goodies, I found out I was still getting sick from my %#@ing lipstick!

Thanks so much,

Leah

Leah:

You're on a good start already. I didn't mean to get you freaked out.

Here's a start: Gluten Free

Dove Shampoo, Pantene, Vidal Sassoon and others Neutrog. Shampoo.

Dove Soap, Ivory, Carress, Dial

All Crest toothpaste, Arm & Hammer, Colgate (Ithingk)

Neutrog. most make-up and lip sticks and glosses, soaps

If you have a product of Neutrog. check the website on the package and write them, and they will send the the long list of their gluten free products.

Cover Girl lipstick are very tricky, as for me....some yes, some not. That's a pain. Alot of people use Basic Essentials, that are not available for me here.

Search here for Cosmetics, you will find more than I can give you now.

It will alll work out, and in a months time, you'll be an expert.

Hang in there, Lisa


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



Celiac.com Sponsor (A8-M):



Smunkeemom Enthusiast
Thank you all so much for great suggestions & moral support! I feel less lost already. What a wonderful group!

I never would have thought to go into the restaurant a day or two ahead of time, but that is a great idea-- that way when it comes to the actual meal I won't be so stressed out, nor will the chef, I hope.

Lipstick & toothpaste & soap, oh my! So much to keep track of! Does anyone happen to know if CoverGirl Outlast lipstick is safe? Colgate toothpaste? Neutrogena shampoo? Dove soap?

I'm so grateful that you all are here-- it's all so new & strange, but with such wise & generous guides I feel much less anxious & confused.

Many thanks,

Leah

Open Original Shared Linkis a list of ingredients to look for in your shampoo, ect. You can print it out and look at everything you have. I threw out all my lipstick and started over, thinking it was probably cross contaminated (put it on after eating cereal in the morning) and also because I lost the packaging with the ingredients on it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,688
    • Most Online (within 30 mins)
      7,748

    Princess.dfc
    Newest Member
    Princess.dfc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
    • Brook G
      People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA
    • trents
      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
×
×
  • Create New...