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

Newly Diagnosed

kaayrah

By kaayrah
in Coping with Celiac Disease

Recommended Posts

kaayrah Newbie
kaayrah
Posted

Hey Everyone,

 

So I just recently (finally) got diagnosed as celiac, I finally got a doctor willing to listen to everything going on and send me for the right tests. Just looking to see if anyone would have suggestions for someone living in a smaller community that has limited options for grocery shopping and very limited gluten free selection. I have the option to drive an hour to the nearest big city center but that's going to be extremely costly to have to do every couple weeks for food when normally we go once a month if that. I do have access to local produce and meats (beef, chicken, and pork) that are butchered at a local butchers. (definite bonus to have farmers and Hutterites close by that rather sell local) But other than that just the basic things like snacks, I am constantly eating because of weird blood sugars (at least 6 small meals a day).

I am super happy to have found this site to have others to get insight on options and brands that are safe. I am certainly struggling right now getting out of the denial stage of this is for real and I cant eat a lot of my favourite foods or go out with friends for supper as often. Any suggestions or support would be greatly appreciated!

 

Thanks in advance  :)

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

Celiac.com Sponsor (A8-M):


Questore Rookie
Questore
Posted

Hey Everyone,

 

So I just recently (finally) got diagnosed as celiac, I finally got a doctor willing to listen to everything going on and send me for the right tests. Just looking to see if anyone would have suggestions for someone living in a smaller community that has limited options for grocery shopping and very limited gluten free selection. I have the option to drive an hour to the nearest big city center but that's going to be extremely costly to have to do every couple weeks for food when normally we go once a month if that. I do have access to local produce and meats (beef, chicken, and pork) that are butchered at a local butchers. (definite bonus to have farmers and Hutterites close by that rather sell local) But other than that just the basic things like snacks, I am constantly eating because of weird blood sugars (at least 6 small meals a day).

I am super happy to have found this site to have others to get insight on options and brands that are safe. I am certainly struggling right now getting out of the denial stage of this is for real and I cant eat a lot of my favourite foods or go out with friends for supper as often. Any suggestions or support would be greatly appreciated!

 

Thanks in advance  :)

 

Red Hill Products are available on line and in quantity, and there are many online stores that speciallize in all the grains, flours, nuts, and seeds that make no-gluten breads tasty.

 

I've ordered in several things to try in small amounts, and am relearning to bake my own breads...isn't that what bread machines are for?  After I get some bread made today, I plan to reporoduce my very favorite triple dark brownies...and hope that Red Hill's flour will give me a tasty result.

 

With the occasional sandwich and brownie, I will not be missing much except the convenience...and the occasional Twinkie!

 

As for eating out...talk to the manager before you go...some have special procedures in place for Celiac's...one merely has to let them know you are not just a 'gluten free' faddist, but the actual disease.

kaayrah Newbie
kaayrah
Posted
  • Author

Awesome thank you so much! I hadn't even thought about making my own breads. I'm not much of a baker but looks like I may have to learn. My big thing is finding something to make perogies (coming from a Ukrainian background they are a staple in my house).
So far I have found most places are really good with Managers (floor or kitchen) coming out and double checking and going over where cross contamination can happen or what they have in place to make sure it doesn't happen. I have a very limited selection for places to eat where I live and some are more concerned about money than taking care of diet needs.

 

So far I'm on day 6 trying my best to be gluten-free and am feeling a million times better! Its just going to be a matter of learning how to cope and deal with the limited options I have here.

cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Have you read the newbie section under coping? There are valuable tips that can expedite healing. Sticking to whole foods is your best bet at the beginning. Most foods that we buy are just naturally gluten free! We rarely eat bread, but save calories for gluten-free cupcakes and cookies!

Luvs2read Rookie
Luvs2read
Posted

Hey Everyone,

 

So I just recently (finally) got diagnosed as celiac, I finally got a doctor willing to listen to everything going on and send me for the right tests. Just looking to see if anyone would have suggestions for someone living in a smaller community that has limited options for grocery shopping and very limited gluten free selection. I have the option to drive an hour to the nearest big city center but that's going to be extremely costly to have to do every couple weeks for food when normally we go once a month if that. I do have access to local produce and meats (beef, chicken, and pork) that are butchered at a local butchers. (definite bonus to have farmers and Hutterites close by that rather sell local) But other than that just the basic things like snacks, I am constantly eating because of weird blood sugars (at least 6 small meals a day).

I am super happy to have found this site to have others to get insight on options and brands that are safe. I am certainly struggling right now getting out of the denial stage of this is for real and I cant eat a lot of my favourite foods or go out with friends for supper as often. Any suggestions or support would be greatly appreciated!

 

Thanks in advance  :)

Good luck to you! It gets easier quickly. I just got diagnosed in July and feel very comfortable with it all.

Hang in there and get good gluten free treats so you don't feel deprived. Keep good snacks at work so you don't feel tempted by the junk there!

C-Girl Contributor
C-Girl
Posted

Hey Everyone,

 

So I just recently (finally) got diagnosed as celiac, I finally got a doctor willing to listen to everything going on and send me for the right tests. Just looking to see if anyone would have suggestions for someone living in a smaller community that has limited options for grocery shopping and very limited gluten free selection. I have the option to drive an hour to the nearest big city center but that's going to be extremely costly to have to do every couple weeks for food when normally we go once a month if that. I do have access to local produce and meats (beef, chicken, and pork) that are butchered at a local butchers. (definite bonus to have farmers and Hutterites close by that rather sell local) But other than that just the basic things like snacks, I am constantly eating because of weird blood sugars (at least 6 small meals a day).

I am super happy to have found this site to have others to get insight on options and brands that are safe. I am certainly struggling right now getting out of the denial stage of this is for real and I cant eat a lot of my favourite foods or go out with friends for supper as often. Any suggestions or support would be greatly appreciated!

 

Thanks in advance  :)

 

Welcome to the forum! It's been an immense help for me, and I hope you too can benefit from the brain trust here!

 

WestCoastGirl was kind enough to share this recipe with me and I made it around Christmas - it was VERY good! Open Original Shared Link

 

I order my gluten-free flours from Nuts.com - they're reasonably priced and have certified gluten free items. Just be forewarned that their buckwheat flour is not gluten-free. Their customer service is great!

 

I'm not sure if you live near an Asian supermarket, but I buy rice by the 10lb bag and always have it on hand. Chex cereal has gluten-free flavors now and makes a really good snack, especially the honey nut. It's available in my local grocery, hopefully it's in yours too.

 

There are rice crackers called Nut Thins by Blue Diamond that are gluten-free and should be pretty common in groceries.

 

And as everyone will tell you here, sticking to whole, unprocessed foods while your body heals is the best idea.

 

Best of luck! And take it from me - heed the advice from the people here. They really know what's up with celiac! :)

kaayrah Newbie
kaayrah
Posted
  • Author

Welcome!

Have you read the newbie section under coping? There are valuable tips that can expedite healing. Sticking to whole foods is your best bet at the beginning. Most foods that we buy are just naturally gluten free! We rarely eat bread, but save calories for gluten-free cupcakes and cookies!

Thanks! I have briefly looked through it. Theres so much information to take in Im trying to not overload myself with too much info at once. 

I am working on the whole foods thing. That part is fairly easy to cover living in a farming community. Thanks ! :) 

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

Celiac.com Sponsor (A8-M):


kaayrah Newbie
kaayrah
Posted
  • Author

Welcome to the forum! It's been an immense help for me, and I hope you too can benefit from the brain trust here!

 

WestCoastGirl was kind enough to share this recipe with me and I made it around Christmas - it was VERY good! Open Original Shared Link

 

I order my gluten-free flours from Nuts.com - they're reasonably priced and have certified gluten free items. Just be forewarned that their buckwheat flour is not gluten-free. Their customer service is great!

 

I'm not sure if you live near an Asian supermarket, but I buy rice by the 10lb bag and always have it on hand. Chex cereal has gluten-free flavors now and makes a really good snack, especially the honey nut. It's available in my local grocery, hopefully it's in yours too.

 

There are rice crackers called Nut Thins by Blue Diamond that are gluten-free and should be pretty common in groceries.

 

And as everyone will tell you here, sticking to whole, unprocessed foods while your body heals is the best idea.

 

Best of luck! And take it from me - heed the advice from the people here. They really know what's up with celiac! :)

Thank you so much for the info! Especially the perogy recipe! I will definitely be trying that one soon. So far this has been my go to place for answers over the last week. Its saved me a lot of time  trying to find answers by calling and whatnot. 

 

I will definitely be looking into the chex  cereal and crackers. Its really difficult at work not having snacks when everyone brings in baking or other snacks. But luckily they are super supportive too and are willing to work with me for when we have staff BBQs and pot lucks etc. Which is awesome. 

 

Thanks everyone! It's definitely nice to have a place to turn to for questions and support for all of this!  :)

NatureChick Rookie
NatureChick
Posted

I'd make a run over to the grocery store that does carry gluten-free items now so that you have some options to help you avoid feeling deprived, but long-term, you'll get good at cooking from scratch from whole ingredients that are naturally gluten-free, and get good at buying enough pre-made foods to last for a month or two. They are more likely to be items that store long-term or can be frozen so you can stock up.

For the first 1-2 months, I tried every premade gluten-free food I could find, even things that I wouldn't normally eat, like cookies and crackers. Some flavors sucked big time, others were okay, but only a few still end up in my cart nowadays. 

My go-to snack in the premade, individually-wrapped category is EnjoyLife Baked Chewy Bars. Much tastier than anything from Glutino. 

My favorite gluten-free pastas are the ones made by Bionaturae, though any gluten-free pasta has to be cooked carefully. I've seen all sorts of advice but I like to cook it really slowly at the lowest-possible temp in order to avoid it getting mushy and losing its flavor. For gluten-free spaghetti sauce, I prefer the vodka sauces. 

Udi's products generally taste okay, but they mostly make things that I can't eat without getting fat.

gluten-free products that my grocer has made in their own bakery are normally cross contaminated.

For frozen meals, look for Feel Good Foods egg rolls, and Evol Bean and Cheddar Enchilada Bake.

I steer clear of Aimee's gluten-free pot pies because they've been cross contaminated the two or three times I tried them though their gluten-free lasagna seems to be less problematic. And I really dislike gluten-free pizza so I gave up. Too often the gluten-free version is also the vegan version. 

I wouldn't recommend relying on gluten-free frozen meals on a regular basis, but they are one of the only ways to get convenience back in your life now that you can't eat out.

Be wary of premade baking mixes that contain guar gum or xanthum gum. They are added for texture and one of the reasons they work is because they are ultra-condensed fiber. This is fine while you are eating it but not fine for digestion. So a general heads up that sitting down and eating a stack of gluten-free pancakes from a mix may not be a good idea. Not that you can't have pancakes (or brownies, or cake), but you'd want to mix it up, have fewer pancakes and a bowl of fruit and some yoghurt instead in order to avoid constipation. Of course, eating more variety is good advice for anyone, but for those of us that are gluten-free, it becomes more practical to actually follow such advice.

There are quite a few protein bars whose entire lines are gluten-free so I'd check out what is available in your local convenience stores so that you know what you can get your hands on in case of emergency. 

Also, your local convenience store probably carries a few gluten-free items in the form of plain potato chips or plain corn chips. Of course brands will vary so you still have to read labels, but if you're caught away from home unprepared, you won't starve if you're willing to eat snack food.
 

CathyO Rookie
CathyO
Posted

You can find a lot on Amazon.  Much of it is under their Prime program, and shipping is free if you're a Prime member.

 

I live pretty far from civilization, but find that a few local grocery stores have gluten-free things.  I went one day and toured the aisles looking around.
Target has some gluten-free items now, as does Aldi.
I have a deep freeze, and when I stock up, I freeze crackers and breads for later use. 

Nuts make a good snack, like almonds.  Cheese cubes.  gluten-free sausage.  Read labels, many of the packaged meats and cheeses will say "Gluten Free" on them.  Nabisco makes a rice cracker we find in most grocery stores everywhere.  Fruit is a good snack.  I keep the envelopes of salmon (tuna comes in them, too) for quick protein snacks.  Cut up veggies with a gluten-free dip, or home made dip.  Tostitos brand chips are gluten-free, as are Fritos. (Sometimes I just need some crunch!)
 

We travel a lot, so we look for things we can take in the car with us for snacks.  These are what we've come up with, so far.


 

kaayrah Newbie
kaayrah
Posted
  • Author

Thank you NatureChick and CathyO! This is awesome info.

I would have never thought to look on amazon! I will be checking that out asap as well.

I am really trying to work at cooking more at home. Which really I don't mind. I rather have a good home made meal over going to a restaurant anyways. Im going to need to get a bigger purse again to hold all the snacks I'm going to need to haul around with me now!

I'm hoping talking to a dietitian next week will be beneficial too. I definitely need some strict guidance when it comes to things like this to get started in the habit of keeping up with everything.

Thanks again everyone! :)

Georgia-guy Enthusiast
Georgia-guy
Posted

Kaayrah, first I want to say Happy Belated Birthday! (Profile shows it)

I am like you with being newly diagnosed after trying to find a doctor to actually listen to me (then when I did, insurance didn't want to cooperate). But anywho, today was my day 1 of being gluten-free. I live in a relatively small city in northwest GA, so there's not much around me shopping wise, but I did find that on the other side of town is a smaller health food store that I plan to check out. I am fortunate enough to have a local restaurant that I've been a regular at where I can trust them to take care of my food (even though I get weird looks going from eating anything to being gluten-free). Fritos are my best friend while I am at work right now. :-)

One thing I would like to ask you though, have you told your family? If so, how did it go?

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for 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.