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

Eeek!


Minwaazhin

Recommended Posts

Minwaazhin Newbie

Feels like a week ago but it's only been a couple of days since the Doctor told me that I dont have Crohns, Cancer, Lymphoma, etc...but..TA DA! Celiac Disease! The big wild goose chase was over. I felt happy to say "Ok. Now that your done messing with me and tons of antibiotics...what now?" Which...Im gonna be nice to the man...he only told me was to see a dietician and didn't really explain much beyond that. He made me feel horrible and told me that I probbably had this a lot longer but with all the stress from my miscarriage, my family, working full time while going to University full time started to make it symptomatic (with a vengance!!!!)...well..in between all that "blaming game" stuff..I did get some answers! LOL

But, now I got more questions..I was wondering...what now? I mean, where do u even begin to start this gluten free stuff if your last memory of the word gluten was in grade 10 cooking? I looked up some stuff on the net yet I still dont get it. There's just so much to take in. For example, vitamin supplements? immunity boosters (not like I need this by the way!)? Joint pain? Im still forbidden to take anything remotely close to aspirin and ibprophen so...what can I take?

Im confused hee hee hee. So basically...any good books you could recommend on this?


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



Celiac.com Sponsor (A8-M):



Piccolo Apprentice

Welcome, I know it is overwhelming at first. Take a deep breath and take it slow. It will get easier. The best way to start out is just eat basic at first. An example is chicken, vegetable, rice, corn. Many newly diagnosed also react to dairy. Again welcome.

Susan

Canadian Karen Community Regular

Don't worry, take one day at a time and each day it will get easier! We have all been at the beginning of the road you are now on, and we are here to answer as many questions as you can fire away at us! Our motto here is there is no such thing as a silly question, so just fire away!

Where in Canada are you? I might be able to steer you in the right direction regarding foods, etc....

Hugs and Welcome!

Karen

alamaz Collaborator

You are where I was three weeks ago and the response you got from your doctor is very similar to what I heard. It is SO overwhelming. Then I got it down for a week and now the past two weeks have been miserable. It's such a roller coaster. A good book to start with is "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. It's informational but easy to read. Another book I found to be okay to start out with easy recipes was "Beyond Rice Cakes: A Young Persons Guide to Cooking, Eating and Living Gluten Free" by Vanessa Maltin.

I would definitely recommend seeing a nutritionist. Don't just use the one your doc. recommended if you can find one locally that specializes in working with Celiac patients. I've been waiting for my appt. which is still two weeks away but I'm told she is one of the best where as the person my doc. recommened barely knew the definition. They will help you sort out the supplements stuff. For now, continue taking whatever you've been taking (if anything) but make sure it's gluten-free. It is so easy to get confused researching on the internet. One site says one thing, another site says another and you'll hear different opinions from just about every direction. The easiest thing I can say is do what works for you.

As for cooking- the first week I started feeling really good I had made a lot of easy on the stomach soups and chicken and rice casseroles with veggies. The only sweet snack I had was a bit of chocolate bar for dessert but I've since eliminated that. The best advice I got was to not go gung ho on the gluten-free products on the market at first. There will be plenty of time to try those!

Amy

ArtGirl Enthusiast

Welcome to the forum - and welcome to the gluten-free life!

What others said - it gets easier. It's like learning a new skill, just takes some time to absorb all the informatino.

A good place to start is right here, reading threads. If you have to pay out of pocket for the nutritionist, you might want to save your money. After a couple weeks of reading information here on this forum you'll know more than they will.

Also, on the main section of Celiac.com is tons of information and recipes.

Celiac.com Site Index

And, of course, the website of Celiac Sprue Associatino

Open Original Shared Link

johnsoniu Apprentice

"Living Gluten Free for Dummies" and "Wheat Free, Worry Free" by Danna Korn are excellent books for getting started.

Welcome to the board, you've found the best source for info right here. Lots of knowledge and helpful people here. Made my first month gluten free a heckuva lot easier.

Ask lots of questions, that's what we're here for. B)

VioletBlue Contributor
You are where I was three weeks ago and the response you got from your doctor is very similar to what I heard. It is SO overwhelming. Then I got it down for a week and now the past two weeks have been miserable. It's such a roller coaster. A good book to start with is "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green.

I second the Peter Green book. I just bought it off Amazon and I can't put it down. Granted someone with Celiac would probably not find it so fascinating. But it's well written and easy to understand so far.

violet


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



Celiac.com Sponsor (A8-M):



zansu Rookie
your last memory of the word gluten was in grade 10 cooking?

at least you HAD heard about it! but of course they were probably taking about kneading the bread to build up that good gluten! :lol:

you get used to the restrictions, where gluten tends to hide, etc. Being on this forum has definately furthered my education - -who knew I had to worry about charcoal! :o

personnally I used the on-line gluten-free product lists and read a lot of labels and stayed away from anything questionable. But I'm a pragmatic, "just do it" kind of person. I researched for a couple of weeks before I committed, and then went for it.

This forum has a lot of helpful info and a search feature to check on past items. Good luck, and we're here when you need us for info or venting!

Minwaazhin Newbie

:lol: I'm taking the biggest biggest "big breath in, slowly let it out" I got. It is overwhelming but yeah...I know I'll get there. I did have a good laugh though when I went out to get some chips (Wedesday is movie night). I was reading the back when my niece asked what I was doing and I explained it to her. Then she turned to me and said "Wow Iya...your one expensive person now huh?" She was looking at the prices for bread and stuff. It was cute!!!!

But thanks! I'll go grab those books. Books are always so much easier to understand (for me anyways). Its going to take some time and adjusting and I know that but...it still feels crazy. Not the coo coo crazy but the "ok...Im going over here now" crazy.

Thank you all for your wonderful advice. Someone said something about charcoal...I never knew that either! :lol: I'm def into the whole books for dummies things. Its nice not to feel as out of it as I felt a couple of days ago. I dont know if this is going to make sense but for me...its like I got a direction to go towards and a place I can ask questions of people who know and may have lived what the hang Im talkin about :lol: Its something tangible and not something I cant see type of deal anwyays ;)

And for Karen, I live in Northern Quebec on the Border with Ontario. :lol: Prolly why I speak english instead of french hee hee hee

kimchi Newbie

Hi, and welcome!

I live in Quebec too, in Chelsea, which is very close to the Ontario border at Ottawa. Feel free to email me if you want any 'Quebec-centric' resources/advice!

Cheers,

Kim

johnsoniu Apprentice

Also, if you're wondering about multi-vitamins and other medicines, here is an excellent link:

Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @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
      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 .
×
×
  • 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.