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

How Stringent?

webagail

By webagail
in Coping with Celiac Disease

Recommended Posts

webagail Newbie
webagail
Posted

Hello-

I am new here and have my appointment to recieve my endoscopy results on Monday. I have been trying to gather information and started reading posts. I have started to get overwhelmed! How stringent do I have to be? Do people really have reactions if they are just sharing a butter dish with guten friendly knives? Or do you really have to make your companions brush their teeth before kissing after lunch at a sandwich stand?

I don't have any other food allergies so the idea of being told what I can and can't eat is depressing enough but do I really have to change my ENTIRE lifetstyle?

Meag

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately yes you do. Even if the biopsy results are negative you do need to give the diet a good strict try as there are a lot of false negatives. It will seem hard at first but you will get used to it and the difference in the way you feel will be well worth the trouble of the adjustment.

tmbarke Apprentice
tmbarke
Posted

I was so upset at first.

WTF?!?

I was in a whole new world......like a new kid at school and when I went to a 'Harvest Health Food' store and asked..."what do you do with these? what are they used for?"

His reply was........."To put things in your MOUTH!"

I was furious and insulted!

I searched and bought a small basket of food for me to eat that nite and for a day or two.

40 bucks!

I decided to come to this forum and found out that you don't have to go to a 'special' store to eat!

Your stores are now adding gluten free products lists and labeling shelves too.

I eat pasta and sauce with meat and cheese (I make it)

I can make chili too (I'll soak my beans tho)

I can even have tacos!

It's just better choices.

Most items say gluten free now - but not all

Ask your grocery store for a list ... if they don't have one, ask them to create one.

It saved me so much time!

I went from 3-1/2 hours for a small cart of food (reading every label!)....to 1-1/2 hours by using the store brand gluten free list!

What a life saver!

It's not losing all of your favorites, just altering them to accommodate YOU!

And the fact that you'll start feeling so much better and notice how your body changes for the good is......PRICELESS!

Tena

Shess0816 Apprentice
Shess0816
Posted
Hello-

I am new here and have my appointment to recieve my endoscopy results on Monday. I have been trying to gather information and started reading posts. I have started to get overwhelmed! How stringent do I have to be? Do people really have reactions if they are just sharing a butter dish with guten friendly knives? Or do you really have to make your companions brush their teeth before kissing after lunch at a sandwich stand?

I don't have any other food allergies so the idea of being told what I can and can't eat is depressing enough but do I really have to change my ENTIRE lifetstyle?

Meag

Yes, you are going to have to be strict. Once you have been gluten free for a little while, you will be able to tell a difference. You'll start feeling better, have more energy, not feel as foggy. You do NOT want to revert back to where you were before starting the gluten free diet. I don't know what other people's experiences have been, but since going gluten free (March 2009) I actually have had much stronger reactions and felt sicker when I accidently had gluten than I did before starting the gluten free diet. It's just amazing how much better you can feel! As far as the butter issue goes, I made grilled cheese sandwiches the other day for me and the boyfriend (gluten free bread for me, of course). I started putting butter on his bread and then realized that I'd been double dipping in the butter container. I took a look and sure enough, tons of crumbs! All it takes is one little crumb of gluten to make you sick. And it's just not worth it! So, what I did, I immediately went and grabbed a permanent marker and wrote his name all over that container of butter and put "G" all over it too. Then I went downstairs and told him he had his own special butter container with his name on it. That way, I won't accidently grab the wrong butter container and end up glutening myself!

On the bright side, you do NOT have to change your entire lifestyle! It is definitely an adjustment, and I'm not going to lie, it is a little rough until you get kind of in a routine, but when you feel so much better, it's totally worth it!! You just have to make changes essentially to the brands of food you are eating. If you like pasta, GREAT, they make gluten free pastas and some of the mainstream pasta sauces are gluten free. If you like ice cream, go for it! Just don't get cookie dough or cookies and cream -- instead choose something like mint chocolate chip or pumpkin (my favorite!). If you like to eat sandwiches every day, feel free to do so! All you have to do is go to grab a loaf of gluten free bread (I'd recommend Udi's), your favorite gluten free lunch meat, and some cheese and enjoy! There are a lot of chips that are gluten free. They make gluten free pretzels, soups, tortillas, pizzas.... You just have to look a little harder, read more labels, and yes, it is a little more expensive.

The big thing, keep posting on this board. I just recently found all these wonderful people on here and it would have been SO MUCH EASIER if I could have posted some of my issues the first few months on here and received some advice! Good luck and enjoy feeling better!!

Sally

ang1e0251 Contributor
ang1e0251
Posted

This change must seem like a huge mountain that you see no way to surmount and no way over. But if you turn the mountain a few degrees you may notice a path up the side that you didn't see before. Turn to another angle and you notice a train that chugs through the mountain to the other side. Walk a little more around the mountain and you run into a guide who can help you navigate the mountains trickiest passes.

It is a big change but you can do it. There are tricks and guides and helpful reading and, of course, supportive friends like us who have been there before you. We're happy to help and to listen. You are not alone and the health benefits you'll soon be seeing will make it worth all the trouble.

Archived

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

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


  • Member Statistics

    • Total Members
      131,986
    • Most Online (within 30 mins)
      7,748
    Christine1
    Newest Member
    Christine1
    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

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.