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

Where Do I Go For Help Staying On The Gf

Guest missyflanders

By Guest missyflanders
in Coping with Celiac Disease

Recommended Posts

Guest missyflanders
Guest missyflanders
Posted

I was tested because of family members with it and trouble with my last pregnancy.

I was on the diet for a year then just gave up. Started it again a month ago and am not doing well sticking with it. Help!!!!!!

Missy

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

As you know probably know, it is very important to stick with the diet or you may run into serious complications like cancer. I would suggest going to a dietician that is very knowlegeable about celiac and reading a few books about the disease. If you need help with recipe ideas don't hesitate to ask.

Jnkmnky Collaborator
Jnkmnky
Posted

You need to choose to be healthy. You have a serious disease that you are in charge of managing. There is no drug out there to assist you with this disease. It's up to you alone, to decide to commit to the gluten free diet and take control of your health. People here will help you find foods to make this easy.

uclangel422 Apprentice
uclangel422
Posted

If at all possible, remove all the gluten containing food from your house or at least the stuff that you enjoy the most and dont walk down those aisles in the store. Print out food lists and restaurant guides, and find substitutes for those foods that you have a hard time giving up.

When in doubt, post on the boards and everyone will help.

Good luck!!

tarnalberry Community Regular
tarnalberry
Posted
I was tested because of family members with it and trouble with my last pregnancy.

I was on the diet for a year then just gave up. Started it again a month ago and am not doing well sticking with it. Help!!!!!!

Missy

<{POST_SNAPBACK}>

What are the problems you're having staying on the diet? Do you cave into the temptation for things you don't have substitutes for? Do you have trouble finding anything to eat? Do you feel pressure to "have just a little"?

It is vital to stay on the diet, so you might start by figuring out WHY you are having trouble sticking with it.

KaitiUSA Enthusiast
KaitiUSA
Posted

As the others have said-you need to stay on the diet. There are things we can have that are good substitutes and its just a matter of finding the brands. For everything with gluten there is something without.

An important thing to realize is if you do not follow the diet you put yourself 40-100 times more likely for cancer, diabetes, and other life threatening or disabling diseases. It's not worth it. It also knocks an average of 10 years off your life.

This site will be a tremendous help to you and will provide you with info you need to know. If you have any questions- just ask.

misskris Apprentice
misskris
Posted

I had trouble sticking to the diet too at first. I thought well I'll just have a little bit - so what if I feel bad. It must be REALLY hard for you since you don't have any symptoms. I know I wouldn't care as much if I didn't feel the pain of it. It's like someone telling you that something is loaded with fat - SO WHAT - it tastes good and I can work it off later! But it doesn't cause me any immediate harm, so I don't really care. Same with Celiac when you don't have symptoms.

The thing is tho - it does hurt your body. I had to come to this realization for myself before I could actually go completely gluten-free. The other thing that helped was the fact that I could still eat out on the go. My biggest problem would be that I would be starving and was rushing from one place to another. The only thing available would be a fast food joint so I would cave in and grab a burger. But now I know that I can order a burger w/o the bun or just a grilled chicken breast (my favorite) and slice it up and dip it in sauce - just like chicken fingers w/o the bread! This has been a major lifesaver!

There are some excellent recipes on this site and lots of info about restaurants as well. I think you're in the right place to help you get a grip on this diet. (By the way - it took me over a year before I became COMPLETELY gluten-free. So hang in there!)

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Well, I can tell you what did it for me - the doctor mentioning to me the word "refractory" when I failed to show any improvement. Just google up "refractory celiac sprue" and that should be enough to convince you of the severity of this disease.... It scared me onto the straight and narrow and that's when I found all of the hidden gluten in my diet at the time.....

Karen

misskris Apprentice
misskris
Posted

Wow Karen - that definitely makes me want to be as careful as possible. :::shudders:::

Guest nini
Guest nini
Posted

I can imagine it would be difficult if you aren't having any symptoms, however... keep in mind that gluten is POISON for your body and would you willingly ingest poison if you knew that it was slowly killing you? Arsenic can be hidden in foods and kill someone slowly without them really noticing they are sick (at first) but IMHO it's JUST as deadly as gluten.

so in my mind gluten = poison ie:arsenic... so no way would I willingly put poison in my body...

that is the mind game I play with myself to keep myself from ever cheating.

you may not have any symptoms now, BUT if you continue to consume gluten, YOU WILL. Trust me on that one. Eventually something would happen to trigger your symptoms and then you may have a lot of other health issues to contend with because of it. stop it NOW while you can!

WLJOHNSON Newbie
WLJOHNSON
Posted

Hi,

I hope so much that you will find it within you to stick to your gluten-free diet. It is truly the difference between life and death. It must be hard when you have no symptoms, but who else will take care of you if you don't?

Start by making a list of the foods you find that you can eat. Print them out on the computer and keep a copy with you, a copy on the refrigerator, a copy in your purse. Eating just meats, fruits, and vegetables, nuts and seeds, is a good way to start, then add in experimental foods, such as Ener-G wheat-free, yeast-free bread made into french toast, Soy Delicious Ice Cream in many flavors, peanut butter by the spoonful, Van's Wheat-Free Waffles (I put powdered sugar or ice cream on them) and I would suggest staying away from all grains, all milk and dairy, butter, egg whites and yeast, and be watching to see how you respond to such foods as soy, potato flour, rice flour, etc.

This diet really becomes a great experiment if you can look at it that way. Read all labels thoroughly and think about food additives such as casein, whey, maltodextrin, etc. which bother many people. 1 out of every 133 Americans supposedly has Celiac. Perhaps soon you will be helping other people as they get on the diet. Good luck to you! Welda Lou

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748
    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.