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
      131,544
    • Most Online (within 30 mins)
      7,748

    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.