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

Newbie And Overwhelmed

watata

By watata
in Coping with Celiac Disease

Recommended Posts

watata Apprentice
watata
Posted

Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

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

Celiac.com Sponsor (A8-M):


alexsami Contributor
alexsami
Posted

im a newbie too and completely overwhelmed, frustrated

shadowicewolf Proficient
shadowicewolf
Posted

Not really, just jump right in. It won't be long before you learn what to do and what not to do :P

Cattknap Rookie
Cattknap
Posted

Hopefully your doctor has made an appointment for you with a dietician or nutritionist. My doctor sent me to the local hospital for a 2 hour orientation on celiac with a dietician. She had mounds of helpful info - local restaurants that served gluten free foods, local support groups, online support groups, lists of foods with hidden gluten, diet guidelines, lists of food additives to avoid, meal planning, etc....very helpful.

Honestly, eating at home most of the time is the way to go. Even eating out where menu items are labeled "gluten free" in restaurants that also serve food with gluten is risky because of cross contamination. If you need to eat out sometimes, make sure you eat at a restaurant where the staff knows what "gluten free" means and where they offer a gluten free menu...you still may be "glutened" but sometimes you need to be able to eat out (vacations, etc.). We have one cafe and bakery that is near us that is completely gluten free - the owners have celiac and they understand the issues...see if there isn't something like that where you live.

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

T.H. Community Regular
T.H.
Posted

Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

This helped me, at first:

- ignoring the processed food for a while and eating whole foods - veggies, meats, fruits, that sort of thing. gluten-free grains - try to get them from places like Bob's Red Mill, where they are tested to be gluten-free. This makes it MUCH easier at first, so you aren't trying to read the label for a million different foods. Just have some fruit and veggies for snacks. Try some peanutbutter with apples (the peanutbutter needs to be gluten-free, though). go for foods that are naturally gluten free: roasted chicken with butter rather than oil, roasts with salt and pepper and onions, squash soup made from scratch, popcorn with butter, homemade french fries, carrot sticks, homemade soups and stews, broiled fish, rice and stir fried veggies with gluten-free soy sauce. Lots of options. :-) Also, they make gluten grocery shopping guides that you can purchase - cecelia's marketplace has one. These list common products that are gluten-free, and is updated yearly. That was a huge help - not perfect, but a big help. :-)

- To try and remember what you need gluten free, or how to avoid contamination, just think: if it touches my mouth/lips, it needs to be gluten free. So if shampoo flows over your lips, if you kiss someone else's lips - those need to be gluten-free. If food touches your food, or knives, or pans - needs to be gluten-free or cleaned until they were.

If it's wood or plastic, it can't be cleaned completely of gluten and you need a new one: wooden spoons, plastic or wooden cutting boards, that sort of thing.

- remember that gluten is not a bacteria or germ. This means that things that simply sanitize won't necessarily destroy it. Gluten can be heated to 500F and that still won't destroy it - think how hot the oven is to cook bread, and that's still bad, right? Soap and water will clean it off, and so will scouring if it's hard residue. But sanitizers and simple hot water won't get it all off.

- Remember, food doesn't have to define us. That was hardest for me, as many of the social things I did with my spouse revolved around food. Instead, we're trying to go out hiking, biking, theater, parks - places where food is not such an issue. It's quite fun, actually. :-)

- And it will get easier! For most of us, the most amazing part is how much better you FEEL once this gets started. It's often shocking how much you realize has been 'bad' and is suddenly gone. Insomnia, aches and pains, memory issues - it's stunning how much better it can be. :-D

AVR1962 Collaborator
AVR1962
Posted

Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

Lots of reading.....there's great help here! Take a look at my blog. Not sure what you are dealing with but the info might help. Best to you! I found it was a matter of experimenting to find what worked.

shadowicewolf Proficient
shadowicewolf
Posted

Dieticians won't do much good. Most times they are out of date on information and some insurance policys won't cover them.

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

Celiac.com Sponsor (A8-M):


kwylee Apprentice
kwylee
Posted

Dieticians won't do much good. Most times they are out of date on information and some insurance policys won't cover them.

Totally agree with this and all the good advice above. I'd also add that even doctors sometimes aren't in the know, but dangerously think they are. Best bet is to take responsibility for what happens to you from the get go.

Didn't thoroughly read all the posts above so it may have been mentioned, but also keep in mind that if you are still symptomatic after a few weeks off gluten, consider other culprits, the most common seem to be dairy and soy, and unlike gluten, those latter items quite possibly could be reintroduced at a later date. Listen to your body. It wants you to be healthy!

watata Apprentice
watata
Posted
  • Author

Thanks for all the advice! Your input is very appreciated! :) :)

Cattknap Rookie
Cattknap
Posted

There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

love2travel Mentor
love2travel
Posted

There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

I so agree. My dietitian is brilliant - she creates awareness in the community, attends all the celiac association meetings, keeps updated constantly...she is who has given me the most information out of anyone (with the exception of this site). She is akin to a detective like those of us who live with celiac or gluten intolerance.

kwylee Apprentice
kwylee
Posted

There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

You are so lucky to have found someone wonderful right out the gate. I had to kiss a few gluten-stupid frogs to find a professional competent in matters of gluten/casein/soy inolerance. If I would have listened to all the instructions given to me by dieticians and doctors before that, I'd still be very sick and struggling. I heard statements such as: "there is no such thing as gluten withdrawal", "you don't have celiac disease so you can't be gluten intolerant", and my personal favorite, "you can just give up gluten during the week and eat it on the weekends, that should be sufficient." Even though I ultimately found a doctor who does understand, it was this forum AND MY OWN BODY that I ended up listening to the most.

Hearing of your smart dietician gives me hope that the tide is turning. I just pray that the current focus on gluten lasts long enough to motivate awareness on the part of all professionals who counsel in these matters.

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted

Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

It can be frustraing, and difficult, BUT, your body will let you know what is best for YOU! All of us are different, unique, and have our own ways to cope, and things that make us feel better. A dietician will tell you common sense, which is to eat things that are natural and pure, contain no gluten, and have no chance of cross contamination. Veggies, rice, lean meats, all of these things are good for everyone, but are perfect for us. Eggs, nuts, and dairy may cause problems with some, and others may tolerate the just fine. It's trickier to find hygiene products that aren't the culprit, but a little research will make you a pro in no time. Good luck!

Cattknap Rookie
Cattknap
Posted

You are so lucky to have found someone wonderful right out the gate. I had to kiss a few gluten-stupid frogs to find a professional competent in matters of gluten/casein/soy inolerance. If I would have listened to all the instructions given to me by dieticians and doctors before that, I'd still be very sick and struggling. I heard statements such as: "there is no such thing as gluten withdrawal", "you don't have celiac disease so you can't be gluten intolerant", and my personal favorite, "you can just give up gluten during the week and eat it on the weekends, that should be sufficient." Even though I ultimately found a doctor who does understand, it was this forum AND MY OWN BODY that I ended up listening to the most.

Hearing of your smart dietician gives me hope that the tide is turning. I just pray that the current focus on gluten lasts long enough to motivate awareness on the part of all professionals who counsel in these matters.

You gave me a few giggles with your post...I know there are many that just don't understand - even professionals.

When I travel I notice that some states/cities are just more aware of celiac (restaurants, grocery stores, waiters, cooks, etc.). Kentucky (where I live) has a way to go although we do have our first gluten free cafe and bakery that opened a few months ago. I tend to frequent those restaurants that have a clear understanding of what gluten interolerant and cross-contamination mean - and there are a few.

My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

GuyC Newbie
GuyC
Posted

As my son told me - dad, you don't have any issue. You can just eat Snicker's bars and orange soda!

kwylee Apprentice
kwylee
Posted

My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

Haha! I guess she thought that pita bread comes from the gluten free pita plant!!! Hysterical!

kwylee Apprentice
kwylee
Posted

As my son told me - dad, you don't have any issue. You can just eat Snicker's bars and orange soda!

So sweet! I guess he figured that covered all the food groups, including extra vitamin C in the soda.

violentlyserene Rookie
violentlyserene
Posted

Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thank

I'm new to this as well. Biopsy was last week so now I'm eating gluten free full time. It is a big pain but it's not the end of the world. Depending on your diet, going with a whole foods diet might be really helpful. It wasn't for me at all and I've found some of the endless suggestions for it from various sources kind of condescending since there is nothing at all wrong with preferring safe substitutes for food if that's what works for you. Anyway, it's definitely something to consider.

I started wandering the aisles of my grocery stores checking things I eat for gluten. There was a lot of swearing under my breath but over time, I'm adjusting and I'm more excited about safe options than I am angry about things I miss.

JoshB Apprentice
JoshB
Posted

My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

This exact thing happened to me a couple weeks ago. I decided to just chance picking the pita triangles off... not the best idea. Oh well. It happens.

Sharon LaCouture Newbie
Sharon LaCouture
Posted

Great advice Cattknap::::

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

kareng Grand Master
kareng
Posted

Great advice Cattknap::::

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

Sharon,

This post confuses me as you have started a topic saying you have had symptoms for 6 months and wondering how to get diagnosed.

What's the story?

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.