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

Ok I Give! I Actually Do Need Help


DeLina

Recommended Posts

DeLina Newbie

OK so the Dr says we finally figured out the problem "celiacs disease"......Ok so what's that?? eliminate all gluten from your diet she says.........Really?? I was so happy, I mean how hard can that be right?? turns out "not" so easy after all.........If there is anyone out there who can point me in the direction of the coping with celiacs for dummys book I would really appreciate it......Because I keep making myself sick accidentally.......I got rid of the bread and the pasta.......but everyday I find it in something else.

Thanks in advance

DeLina


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



Celiac.com Sponsor (A8-M):



MELINE Enthusiast

I think that what is most important is to keep in mind that EVERYTHING that gets close to your mouth or in your mouth must be checked. Trust NOTHING. If you cannot check it, don't eat it.

I mean toothpaste. shampoo, make up, lipstick, lotion, anything.

I 've found gluten in all these cosmetics and also in olives (in a pack), balsamico vinegar (in caramel color-I think in US it is gluten free, check it out), honey, wine, wheat - soya- lactose-sugar free vitamins (but they were not gluten free......) and SPICES. Use only spices that are labeling their ingredients cuz many manufacturers use wheat in spices.

Do not comsume anything that contains artificial flavoring.

Find in the home page of celiac .com the list with no no ingredients. Google "hidden gluten" and check out the results. Call the manufacturers of anything you are not sure if it is safe and ask them.

Good luck........

Meline

Paul Jackson Rookie

Hi, Meline!

It's time to clear out your kitchen cupboards where you've kept all your food and condiments. Some of these edibles are not truly edible, and must be given away to a presumed non-celiac.

I assume that as a celiac, you are only intolerant of wheat and do not also have an allergy to corn. If so, you are fortunate to be in Florida, where you may visit the local Wal-Mart to replace most of your condiments with those labeled "GLUTEN-FREE." While you're there, why not pick up a box or two of Rice Chex, which also is so labeled ?

Even if you stay strictly on a gluten-free diet, your body may be quite upset during the transition to that diet, which could last a couple of weeks or (as in my case) a month and a half. The good news is that after this painful period of time, the celiac's health usually continues improving for several months and, in the case of a mature adult, a couple of years.

Best wishes,

pjmaxx ;)

Paul Jackson Rookie

Oops, I mistook Delina for Melina--beautiful-sounding, though homonymous names, I might add.

missy'smom Collaborator

Welcome.

I took the guilty until proven innocent approach to foods. Here is a link to a page that has lists of safe and unsafe ingredients.

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

For the reasons you are finding out, it is advised to stick with simple, natural foods in the beginning to speed the healing process. Do not hesitate to call manufacturers. They are often very helpful. Info. can also be found on their websites by clicking on FAQ's or Contact Us. Any condiments in tubs and jars, like jam, margarine, peanut butter and used sticks of butter are contaminated from previous use. You will need to replace them. If you share a home with others, you will need to get two or put a portion of the new one into another container and label one gluten-free not to be used by gluten eaters. For things like mayo, you could consider buying the kind in the squeeze bottle so that you all can use the same one. Let everyone know that openings are not allowed to touch their foods.

I used the same measuring spoon for more than one ingredient when I baked previously, so many of my baking spices were contaminated with wheat. If you're like me, you should buy new ones. McCormick/Shilling is a trusted brand. You'll need new baking powder and soda too, as they are probably contaminated.

Here is a list of companies that will disclose all gluten on the label.

Open Original Shared Link

Wheat is require by law to be listed on lables but barley is not. The lists above will help you identify ingedients that could contain barley. If in doubt, contact the manufacturer.

All oats are considered to be contaminated with wheat so we have to buy only oats that are certified gluten-free. It is advised that you wait until you have healed and introduce them slowly because some react to them because of a compound that they contain that is similar to the gluten.

It is a learning process. We all make mistakes so don't be hard on yourself but keep up the good fight to eliminate all gluten for your health. It will get easier. At first it may seem limiting but you will realize in time that we do have alot of variety available to us. Come here anytime and ask away. We can help with menues and recipes etc. if you need help. Many of your old recipes can easily be converted to gluten-free without sacrificing flavor or texture.

DeLina Newbie

OMG! really?? Cosmetics?? Ok so basically I should throw away everything in my house and start over.......Ok I can do that to tell the truth I'm just tired of feeling sick.........I've been sick a loooong time..........I have been poked and prodded to the point of exhaustion.....I was starting to think I was crazy or something.......I was so relieved when I finally had a diagnose to be honest I guess I didn't put much thought into the process of getting better......and my teenagers were not thrilled when I tossed the bread into the trash.....Thank you all for your help......I just located a health food store in my area with gluten Free products and vitamins.......When I looked at the ones I just purchased I found they contained gluten.

I just wrote a list.........and if anyone have a gluten free recipe for marsela wine sauce.......I would really love it if I could keep my favorite food.

MELINE Enthusiast
Oops, I mistook Delina for Melina--beautiful-sounding, though homonymous names, I might add.

:D


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator
OMG! really?? Cosmetics?? Ok so basically I should throw away everything in my house and start over.......Ok I can do that to tell the truth I'm just tired of feeling sick.........I've been sick a loooong time..........I have been poked and prodded to the point of exhaustion.....I was starting to think I was crazy or something.......I was so relieved when I finally had a diagnose to be honest I guess I didn't put much thought into the process of getting better......and my teenagers were not thrilled when I tossed the bread into the trash.....Thank you all for your help......I just located a health food store in my area with gluten Free products and vitamins.......When I looked at the ones I just purchased I found they contained gluten.

I just wrote a list.........and if anyone have a gluten free recipe for marsela wine sauce.......I would really love it if I could keep my favorite food.

You can probably use YOUR recipe.

For sauces that you used to use all-purpose(aka wheat flour) in you can just substitute a gluten-free all-purpose flour blend like Bob's Red Mill All-purpose Flour Blend or some other gluten-free flour. Cornstarch is gluten-free, so get yourself a new box if you think yours might be contaminated and use it just as you did before.

What other ingredients does it contain?

Gemini Experienced
OMG! really?? Cosmetics?? Ok so basically I should throw away everything in my house and start over.......Ok I can do that to tell the truth I'm just tired of feeling sick.........I've been sick a loooong time..........I have been poked and prodded to the point of exhaustion.....I was starting to think I was crazy or something.......I was so relieved when I finally had a diagnose to be honest I guess I didn't put much thought into the process of getting better......and my teenagers were not thrilled when I tossed the bread into the trash.....Thank you all for your help......I just located a health food store in my area with gluten Free products and vitamins.......When I looked at the ones I just purchased I found they contained gluten.

I just wrote a list.........and if anyone have a gluten free recipe for marsela wine sauce.......I would really love it if I could keep my favorite food.

Delina....you only have to be concerned with anything that goes on your lips.....for obvious reasons. As far as eye shadow or mascara, etc., unlss you think you'll be eating any, it's OK to use these products on your skin. Gluten has to get into your intestinal tract to cause a reaction and it only gets there by mouth.

I would suggest reading Dr. Peter Green's book on Celiac Disease called "Celiac Disease, The Hidden Epidemic. He is a leading doctor and researcher on it and it's an excellent reference book on what the correct protocol is for following the gluten-free diet correctly. There is much information floating around that is not true and it will only confuse people and make the diet that much harder to follow. I only use gluten-free lip products and have had no problems. My bloodwork is excellent so I know the cosmetics are not a problem.

The teenagers will get over the bread in the trash.....they can eat bread outside the home. You did the right thing!

SacGFGirl Explorer
OK so the Dr says we finally figured out the problem "celiacs disease"......Ok so what's that?? eliminate all gluten from your diet she says.........Really?? I was so happy, I mean how hard can that be right?? turns out "not" so easy after all.........If there is anyone out there who can point me in the direction of the coping with celiacs for dummys book I would really appreciate it......Because I keep making myself sick accidentally.......I got rid of the bread and the pasta.......but everyday I find it in something else.

Thanks in advance

DeLina

For about the first two weeks of going gluten free all I ate was plain chicken and rice or a potato because I knew it was save and in a way it starts to detox your body. I slowly reintroduced things into my diet so that if i was mistaken about something being gluten free that wasn't then I knew for sure what made me sick. At first it can be frustrating but I would take the extra time and call companies while standing in the grocery store. Some, like Hershey's will mail you a list, others like Frito Lay have a list on their website, and other companies like Kraft say they will clearly state if wheat is an ingredient, thus you have to read the label very carefully. It's not a requirement, but if there is a "contains" statement and wheat is not listen then the item should be safe. Best of luck.

Amyleigh0007 Enthusiast

Living Gluten Free for Dummies is the best book I have read! It is by Danna Korn. She is funny, informative, and makes you feel like it's going to be okay. I felt much better about the future after reading her book.

DeLina Newbie
Living Gluten Free for Dummies is the best book I have read! It is by Danna Korn. She is funny, informative, and makes you feel like it's going to be okay. I felt much better about the future after reading her book.

There really is a book............wow I'll order it thanks

DeLina Newbie

thank you all for your help...........I feel better just knowing there is such a wealth of information out here.........I just thought it would be easier than it has been.........I did find a health food store right down the street that carry a whole live of gluten free foods and vitamins.....I just had my sister come over and go thru my pantry.........It's empty of all things not gluten free........My husband told me it's better for us all to change our eating habits to avoid accidents.........I am going on vacation is Seattle next week.....so that will be a bit of a challenge but, I'm sure it isn't impossible.......Last night I was somewhat discouraged thinking maybe I wouldn't be able to do it and that I would just be sick forever..........Thanks again for all your suggestion and for letting me know that I'm not out on this island alone.

gfpaperdoll Rookie

You will also need to get a new chopping board, wooden spoons, pasta strainer, anything that is porous including non stick pans & cast Iron skillets - the gluten gets in there & stays until it comes in contact with your food. Just to let you know it took me a couple of years to believe I had to get rid of my cast iron skillet. Because I was mostly wheat free for 10 years - but I always made cornbread with flour in that skillet. I finally gave in & bought a new one - because I realized that I was not cooking in it. I had thrown out more than one batch of food cooked in that skillet that made me sick.

I prefer stainless steel for cooking (& a cast iron skillet) & use glass baking dishes for freezing my food.

Hope you are better soon.

oh & we all have different tolerances for makeup & shampoo etc. So you can read all the threads for the pros & cons - but the bottom line is that it affects some & does not affect others. If you get any bumps/pimple things in your scalp it is probably from your shampoo. I also get suds in my nose, ears, mouth, & eyes, when I shampoo - so I am using a gluten-free one!!! Also if you put on lotion & then touch your food you can get zapped.

so if you do not do a good kitchen clean out - in a few weeks when you start getting CC just remember...

zero Newbie

Also being new to all of this as of 2 months ago I would have to repeat the recommendation made by Gemini for the book by Peter Green and Rory Jones. In addition to helping me to distinguish all the misinformation which is floating around it helped to prepare me for the inevitable questions I got from my family and friends. It was nice to have facts to back up why I could not eat some items and what the consequences are. Good luck.

rob

purple Community Regular

Just thought I would add in case someone didn't, make a trip to the dollar store to replace lots of items.

babysteps Contributor
thank you all for your help...........I feel better just knowing there is such a wealth of information out here.........I just thought it would be easier than it has been.........I did find a health food store right down the street that carry a whole live of gluten free foods and vitamins.....I just had my sister come over and go thru my pantry.........It's empty of all things not gluten free........My husband told me it's better for us all to change our eating habits to avoid accidents.........I am going on vacation is Seattle next week.....so that will be a bit of a challenge but, I'm sure it isn't impossible.......Last night I was somewhat discouraged thinking maybe I wouldn't be able to do it and that I would just be sick forever..........Thanks again for all your suggestion and for letting me know that I'm not out on this island alone.

Sounds like you have a supportive family and are taking many healthy steps, congrats!

And it does get easier, eventually :)

Luckily for your upcoming trip, there is a prominent gluten-free blogger in seattle, her website has a lot of local restaurants noted, Open Original Shared Link. Also do a search for "seattle" on this website and you should find a few threads on gluten-free friendly spots.

One thing I didn't see mentioned yet, the first few weeks gluten-free while your gut starts healing it can be tough to digest milk, you may want to cut out dairy for a few weeks and then re-test. Also initially you may find that your reaction to cross-contamination (cc) from gluten gets much more, er, bold and noticeable. Hang in there!

missy'smom Collaborator
You will also need to get a new chopping board, wooden spoons, pasta strainer, anything that is porous including non stick pans & cast Iron skillets - the gluten gets in there & stays until it comes in contact with your food. Just to let you know it took me a couple of years to believe I had to get rid of my cast iron skillet. Because I was mostly wheat free for 10 years - but I always made cornbread with flour in that skillet. I finally gave in & bought a new one - because I realized that I was not cooking in it. I had thrown out more than one batch of food cooked in that skillet that made me sick.

You can put your cast iron in the oven on self cleaning cycle. when it's done you'll see a powdery mess. Clean it well and wipe down the oven-soap and water are fine. No need for oven cleaner. Then reseason the skillet and dedicate it gluten-free only.

dksart Apprentice
....My husband told me it's better for us all to change our eating habits to avoid accidents...

You are so incredibly lucky to have a supportive husband. Mine still thinks I should be able to kiss him after he eats a sandwich or drinks beer because "it can't be that bad, I swallowed it all"

DeLina Newbie
You are so incredibly lucky to have a supportive husband. Mine still thinks I should be able to kiss him after he eats a sandwich or drinks beer because "it can't be that bad, I swallowed it all"

Well maybe it's luck or the fact that my husband has lived through 2 years of weight loss to extremes and he's been vomited on a few times......I think it maybe a selfish act as much as it is supportive.....LOL.....Not that he isn't a supportive husband.....you're right I am lucky to have him.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.