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

Is It Impossible To Heal 100%?


jasonD2

Recommended Posts

jasonD2 Experienced

I mean unless i never ever eat outside my house is there anyway I will be able to heal my damage 100%? the chance of getting glutened is always high no matter how careful you are -- i hear stories about people healing and being able to tolerate other foods again, but are these folks the ones who never eat out or bring their own food to places? I work in sales and travel a lot and just dont see how i will ever be able to not eat out. do i quit my job? think of a new career? i'm sorry but there is just now way i will EVER bring my own food into a restaurant with other people

Also, is it true that every time your glutened you reverse months and months of healing?


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

There is no definite answer for this one. Dr. Green told us they really don't know why some heal much quicker than others, or why some seem to not heal well. Some people continue to eat gluten at times...they say, each glutening can set you back 3 months. Some never go totally gluten free. Unless you eat whole foods, things that never do contain gluten, you can never be 100% gluten free.

As for the damage healing, that depends on the person, how many years it took to be diagnosed, how strict they are, many variables.

You do the best you can for you.

chasbari Apprentice

Is that three month set back an arbitrary number or is there clinical evidence of such. I know I have been able to maintain strict gluten-free with only one glutening episode for the last 7 months and am healing up well. I have a hard time, after the experience I had of a severe one time glutening, with believing that it sets you back with that much damage... and my gut damage was considerable at diagnosis. Yes, I am very careful about what I choose to eat now and don't have the added challenge of having to entertain clients as you do but I now know that this is the key to me feeling healthier every day and so I will do anything necessary to maintain this even though I live in a house full of gluten eaters. It can be done. What has been the key for me is sticking with strictly paleo and not trying to incorporate pseudo faux gluten equivalent foods. I make no apologies for taking food with me and if anyone is curious I will explain.. but only if asked.

tarnalberry Community Regular

realize that by saying you will NEVER bring food into a restaurant, you CHOOSE to eliminate an option.

if you also say that you will NEVER eat before hand and just socialize at the restaurant, you CHOOSE to eliminate another option.

that only leaves you with a very risky option.

it may be the right choice for you, but KNOW that YOU are the one eliminating your own options.

jasonD2 Experienced

Maybe so...but thats one thing I will never do...bring my own food to a restaurant. Id rather not eat at all and that's usually what I do when i go out and people are eating . im just not gonna be that person who does that

tarnalberry Community Regular
im just not gonna be that person who does that

what kind of person are we (those of us who do)?

(I'm not trying to be snippy at all, but ask the "why do I think the way I do?" kinds of questions, so we understand what *really* motivates our actions and can evaluate *that* objectively.)

darlindeb25 Collaborator
Is that three month set back an arbitrary number or is there clinical evidence of such.

All I know is, this is what Dr. Green has told us as a speaker. I also know, when I get glutened, often times I am sick for at least 3 weeks and up to 4 months.

I have taken my own food to a restuarant, and they were told before I went, that I was. My boss was throwing a going away party for one of our workers, and told them I could not eat their foods. They gave me a plate to put my food on, and no one but us knew.

Choose your battles, if you prefer to get sick by eating out, that is your option.

Last night, our group leaders said if you want to eat out, stick to the better restuarants which are now catering to celiac...don't go to fast food places like Applebees, PFChangs, and such...too much chance of CC there.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Oh, I had wanted to add:

I don't think you have to give up your job and change careers. But you may have to get creative and inventive, in a way you've never had to do before. Think of that, however, not as a burden, but an opportunity that could both improve your skills at your job, and in life in general. You never know the possibilities creativity will afford!

GottaSki Mentor
Last night, our group leaders said if you want to eat out, stick to the better restuarants which are now catering to celiac...don't go to fast food places like Applebees, PFChangs, and such...too much chance of CC there.

Hmmm, while I agree that you need to be careful about choosing restaurants, I strongly disagree with including PF Changs in the list to stay away from. We have found that their gluten-free policy is fantastic and implemented very well by everyone including hostess, waitstaff and chef at two PF Chang locations. Many restaurants with gluten-free policies don't train their staff. We find that it is obvious when a restaurant and their staff understand our needs as we state them or do not understand or are careless with our requests.

While traveling and business meals can be tough, it is probably best to order simple food (grilled meats, steamed vegies, rice or baked potato). I understand that you don't want to bring your own food, but how about throwing a gluten-free dressing in that briefcase to add some flavor?

Good Luck and certainly don't quit your job - well at least not because of your dietary needs :)

tarnalberry Community Regular
Hmmm, while I agree that you need to be careful about choosing restaurants, I strongly disagree with including PF Changs in the list to stay away from. We have found that their gluten-free policy is fantastic and implemented very well by everyone including hostess, waitstaff and chef at two PF Chang locations.

Some here have had really bad luck with PFChangs. The effectiveness of their training and staff seems to vary significantly from location to location. I highly recommend trying out a place (not eating if you don't feel safe) and seeing how it goes. Sure, this risk is not for everyone, and I'd certainly stay away from ones with a bad reputation, but it's an option. (I've had luck in Bellevue, WA; Walnut Creek, CA; Irvine, CA; and Long Beach, CA; not to mention a few others I don't recall at the moment.)

lovegrov Collaborator
Maybe so...but thats one thing I will never do...bring my own food to a restaurant. Id rather not eat at all and that's usually what I do when i go out and people are eating . im just not gonna be that person who does that

Please explain what exactly is wrong with that.

richard

Mskedi Newbie

I'm curious why you're so opposed to bringing your own food as well. If the restaurant you're going to is one you trust and will cater to you, that's one thing, but if you know you can't eat... why not bring your food? There are many people out there who are actually uncomfortable when they're eating and someone else isn't -- I've yet to meet anyone who's uncomfortable when someone brings their own food for dietary/health reasons. I've done both several times (as a vegetarian, not because of Celiac yet, and generally in catered work situations), and bringing my own food put a LOT less attention on me than not eating.

Three Ds Newbie

Not being able to eat out at very many places has been one of the most difficult changes for me. I really miss my weekly lunch with friends and I'm thinking I will start eating before hand and go and just get something safe like a coke.

For those of you who wrote about bringing your own food to restuarants . . . I never thought about doing this and have heard that in some areas you cannot do so due to health code/regulations. Has this been a problem for you? Are there ways around the "code"? Or are you just in an area where it's not against the health regulations?

GFgirly Newbie
All I know is, this is what Dr. Green has told us as a speaker. I also know, when I get glutened, often times I am sick for at least 3 weeks and up to 4 months.

I have taken my own food to a restuarant, and they were told before I went, that I was. My boss was throwing a going away party for one of our workers, and told them I could not eat their foods. They gave me a plate to put my food on, and no one but us knew.

Choose your battles, if you prefer to get sick by eating out, that is your option.

Last night, our group leaders said if you want to eat out, stick to the better restuarants which are now catering to celiac...don't go to fast food places like Applebees, PFChangs, and such...too much chance of CC there.

Just a little note***

PF Changs is now gluten friendly :]

Open Original Shared Link

That's their gluten free menu.

Some other restaurants I've found helpful are Chili's, Pizzasalad (if you're in the area), Wendy's (if you want fast food), Chipotle, BJs (last I checked they were reformulating their allergy menu)

Honestly if you just alert the manager or take your server aside or even call before you come in to eat, many restaurants will be very cooperative especially small, personal restaurants. These people want you to give them business and will most likely do anything to make you comfortable. If I don't have the option of picking the eating place I either eat a garden salad and eat something else after or if I have time I'll research beforehand and see which gluten free options are offered and how well the restaurant controls contamination. I've found that most people who I tell about my disease to, are naturally curious and in satisfying thier curiosity i'm also heightening the chance that anyone in their family with undiagnosed gluten sensitivity or celiac's will be given the opportunity for proper diagnosis. Most family members and friends who recognize and symptoms or complications that I discuss will talk about the possibilities with their suffering family members. You don't need to preach your disease, but you also don't necessarily need to hide it. It wouldn't be the first thing I tell someone that I meet but if the need comes up I wouldn't hesitate to say anything. Consuming gluten to satisfy those around you is a horrible idea; you need to be doing everything to keep yourself healthy. If it helps here's a link to a website with gluten-friendly restaurants. Also checking with support groups in areas your traveling to will provide you with information on grocery stores and other restaurants in the are that would be good to eat at.

Open Original Shared Link

Open Original Shared Link

Good luck and stay healthy!!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.