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


OliviaB

Recommended Posts

OliviaB Newbie

I just got diagnosed with Celiacs yesterday. I am still feeling very overwhelmed by the whole thing. They called me at about 4:00 in the evening and said my EGD confirmed that I have Celiacs and that I need to be on a gluten free diet and am welcome to stop by the clinic to pick up information about the new diet. Well, I am a nurse at a hospital and have plenty of access to patient education. I had to go to work that night and did not have time to go to the grocery store and had no gluten-free options at the house. At work, the only gluten-free options in the cafeteria that I could find was a salad. I am also a full-time student working on getting my Master's and had to come home after work to study and do school work. Still, no time to go to the store yet. I feel like I don't have the time or money for this complete life-style change. I feel silly for being so upset about not getting to have gluten anymore, but I never realized how many of my favorite things have gluten (Mini-Wheat's cereal, cookies, brownies, blueberry scones, and so on). I also have read from sources that you should be dairy-free, at least in the beginning of the gluten-free diet? No more milk or cheese?! I guess I just wanted to vent...

Any tips on quick, easy meals and breakfast foods? What are easy foods to take to work? And how do you handle going to eat at other people's houses?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Gee Eff has put the links for some food threads here lke what's for dinner:

I'll probably lose my Celiac membership card for saying this but - I didn't stop eating dairy. I didn't drink milk but I still ate cheese & yogurt. I tried not to just eat large amounts of cheese but a slice on my sandwich or some on my chili was fine. You can try it for a few weeks with dairy & see how it goes.

JustNana Apprentice

Olivia,

Welcome. The people here understand how overwhelming it is when diagnosed with celiac (no s) disease. I'm just 8 weeks in. I'm still eating dairy. The only products I use that are special Gluten Free are Udis bread for toast in the morning, Crunchmasters crackers which are way better than Triscuits or Wheat Thins for dip and spreads and the rigatoni from Bionaturae that is great with my pasta sauce.

Go simple. Meat, poultry, fish, fruit, veggies, rice, potatoes, etc. And be patient with yourself. You are going to give yourself an online crash course and be an expert in a week!

What are your main symptoms?

The only other advice I have is get your thyroid tested. Celiac and Hashimoto's are connected. Have your vitamin levels checked. Malabsorption may have robbed you of Vitamin D, the B vitamins especially B12, folic acid, iron etc.

And keep coming here. This board has taught me more than every other source combined. The members are terrific. You will feel right at home! :-)

JustNana Apprentice

Kareng,

LOL same here. But after researching I conclude that dairy is fine for some Celiacs. Lactose intolerance is an uncomfortable nuisance for most people, not a real health issue if you are cautious and not super sensitive. Yes, I know, some folks really suffer as they are quite ill from even small amounts. Not minimizing anyone's pain.

IrishHeart Veteran

Welcome to the Forum!

Don't think about what you cannot eat--think about what you can eat :) . Fresh meats, veggies, fruits, nuts, eggs, fish, etc.

Karen was lucky she could eat cheese, but yes, many of us had to give it up for a while at first.

I can give you some ideas that I wrote up for my family if you wish.

Get your printer ready! ;)

Dietary concerns

squirmingitch Veteran

I only had to lay off dairy for a couple weeks before I could tolerate it. Having said that; I have dh & then had to go off dairy b/c of the iodine content only. I'm back on iodine & do fine with dairy. Not so with soy. I have a feeling soy will be a no-no for me for life. Olivia, you may want to keep track of how soy affects you as many celiacs cannot tolerate soy.

IrishHeart Veteran

Kareng,

LOL same here. But after researching I conclude that dairy is fine for some Celiacs. Lactose intolerance is an uncomfortable nuisance for most people, not a real health issue if you are cautious and not super sensitive. Yes, I know, some folks really suffer as they are quite ill from even small amounts. Not minimizing anyone's pain.

Yes, it is true that dairy is fine for most celiacs when the villi regrow. but some can never tolerate it again. :( I hope I am not one of them. I continue to try dairy products and find they give me a little grief in large amounts.

Most celiacs come to the realization that it is best to give up dairy --just for the first few months-- because lactase is produced in the tips of the villi and if there is insufficient lactase, it is a real problem. The continuing digestive problems, diarrhea and bloating is more than a nuisance--it causes major pain, dehydration, loss of work, etc.-- and causes someone to think the gluten-free diet is "not working".

That is the number one concern on here from newbies, I think...why isn't this working? And all the veterans chime in "dump the dairy!" :lol:

(It has nothing to do with being super sensitive, it has to do with the lactase insufficiency.)

Lucky for you that you can tolerate it so soon after DX!


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



Celiac.com Sponsor (A8-M):



JustNana Apprentice

Irish

*on my knees, much bowing and scraping*

I'm not worthy...

What an amazing, brilliant, generous post! You are a scholar and a gentleman, Sir.

I'll bet you just made Olivia's day. Pssst-Olivia (and saved your untold hours of on your own info gathering)

I am thrilled with the info regarding buckwheat cereal. I am ordering some today. And I would NEVER have though about Kozy Shack Rice PUDDING....WHOOPEE.

Thank you so much. (Ever seen an old lady do a happy dance?)

IrishHeart Veteran

I have a feeling soy will be a no-no for me for life.

Maybe not! Many secondary food intolerances clear up after being gluten-free for a while and healing the gut.

Never say never! (although soy is not the world's greatest food, but it is IN everything and makes it hard for those of us who have had to avoid it)

For instance, I eat mayo now and have no problem and I have had soy lecithin in vitamins without issue. I am in no hurry to eat tofu (blech) :lol:

I had an off- the -chart (severe)intolerance (IgG) to soybean in 2010. Now, it looks like maybe we can be friends. :lol:

JustNana Apprentice

Irish

I didn't realize that the dairy issue could be so important for a newbie. I sure don't want to steer someone wrong. I know I am lucky.

IrishHeart Veteran

What an amazing, brilliant, generous post! You are a scholar and a gentleman, Sir.

Thank you so much. (Ever seen an old lady do a happy dance?)

Everytime I look at myself dancing in the mirror. :D

You're a newbie aren't ya? ;):lol: You do not know me yet...but

I am a chick, sweetie. A warrior princess.

I have posted this puppy a few times. I am thinking about putting a copyright on it. (kidding!) :lol:

Glad it helps!! Eat up, people!!

Cheers, IH

IrishHeart Veteran

Irish

I didn't realize that the dairy issue could be so important for a newbie. I sure don't want to steer someone wrong. I know I am lucky.

You didn't, hon!

There is no "one size fits all" with this thing. EVERYBODY is different.

If anyone can have dairy without issue, that's FANTASTIC!!

Pass the ice cream, Nana! :D

JustNana Apprentice

Irish Warrior Princess

ROTFLMWBO. (wrinked)

Yes, I'm a newbie. I have a good feel for you as a person from reading lots of your posts. It's odd actually that I got the mistaken impression you were a dude! Shoulda known a wise woman voice when I heard it. It's always laced with wit and a wink. :-)

squirmingitch Veteran

Maybe not! Many secondary food intolerances clear up after being gluten-free for a while and healing the gut.

Never say never! (although soy is not the world's greatest food, but it is IN everything and makes it hard for those of us who have had to avoid it)

For instance, I eat mayo now and have no problem and I have had soy lecithin in vitamins without issue. I am in no hurry to eat tofu (blech) :lol:

I had an off- the -chart (severe)intolerance (IgG) to soybean in 2010. Now, it looks like maybe we can be friends. :lol:

Great to know IH! Thanks! Yes, I'm not a fan of soy anyway BUT it IS in everything. I do tolerate the little bit in my gluten-free mayo but am careful to be stingy when spreading it on. I'm a big mayo fan & it's been hard to control my desire to liberally douse the bread with mayo. Such a fan of mayo that I can (could) eat it with a spoon like other people eat peanut butter!

And I'm with nana bowing & scraping for the "list". Many of those things I have discovered but there are quite a few gems in that list I had not discovered yet. Thank YOU! I have saved it to my computer titled, "gluten-free - Everything you ever wanted to know".laugh.giflaugh.giflaugh.gif

nmull #newly diagnosed Newbie

I Just want to say Coming from a Newbie- This is the most informative thread I have read on here.

Irish Heart - Thank you so much for taking the time to type all of your information up!! it is so helpful And I wish I would've had your info a few months ago when I started on this journey :)

OliviaB Newbie

Wow thank y'all! This is very helpful! Thanks for such a detailed response, IrishHeart! I hope my grocery stores have all of the options y'all have mentioned. I have never really noticed the gluten-free products, but I have also never looked for them. I plan of staying away from dairy for now, at least until my follow-up appointment with my GI doctor in May. I am almost excited to start working on a grocery/meal list and go shopping (almost). Right now I am living off the eggs, meats, and veges we have at home. I am really hating our pantry that is so full of breads and cereals. I told my husband I was going to put some caution tape over the door ;). Thanks again for the help, I really needed to pull myself together and stop feeling sorry for myself!

alex11602 Collaborator

Great to know IH! Thanks! Yes, I'm not a fan of soy anyway BUT it IS in everything. I do tolerate the little bit in my gluten-free mayo but am careful to be stingy when spreading it on. I'm a big mayo fan & it's been hard to control my desire to liberally douse the bread with mayo. Such a fan of mayo that I can (could) eat it with a spoon like other people eat peanut butter!

Quick note on the soy in mayo...my mom found a Hellman's mayo that doesn't have soy for my daughter, it's made with canola oil and it tasted like the regular Hellman's.

squirmingitch Veteran

Quick note on the soy in mayo...my mom found a Hellman's mayo that doesn't have soy for my daughter, it's made with canola oil and it tasted like the regular Hellman's.

Ooooooooooo, To me, if it isn't Hellman's it isn't mayo.smile.gif Could you ask your mom which one it is please? I looked at all of them in the store the other day & couldn't find one w/o soy so maybe my store doesn't carry that particular one of Hellman's but if I know which one it is then I will find a store that carries it!

IrishHeart Veteran

"gluten-free - Everything you ever wanted to know".laugh.giflaugh.giflaugh.gif

Oh hon, it is not everything you want to know, :lol: but it is a start for some who are so scared and feeling lost. The links to the safe/unsafe foods and cross contamination issues /hidden gluten are ones I found the most important. I made a few rookie mistakes the few first months myself. :rolleyes:

For the real deal goodies, not boxed/packaged stuff, check out the recipe threads on here--these folks are amazing!

There is no need for any celiac to feel deprived on this diet.

Honestly, I have adapted all my recipes and I am a bit of a gourmet and do not find that gluten free means "Boring." Not at all.

The one thing I find difficult (and makes me frustrated and sad sometimes) is the loss of total spontaneity. We can't just eat any old place on the road, but everything can be worked around. It just takes planning.

;)

IrishHeart Veteran

Wow thank y'all! This is very helpful! Thanks for such a detailed response, IrishHeart! I hope my grocery stores have all of the options y'all have mentioned. I have never really noticed the gluten-free products, but I have also never looked for them. I plan of staying away from dairy for now, at least until my follow-up appointment with my GI doctor in May. I am almost excited to start working on a grocery/meal list and go shopping (almost). Right now I am living off the eggs, meats, and veges we have at home. I am really hating our pantry that is so full of breads and cereals. I told my husband I was going to put some caution tape over the door ;). Thanks again for the help, I really needed to pull myself together and stop feeling sorry for myself!

It's okay to mourn and feel sad, shocked and go through a whole gamut of emotions. But, please do not worry about eating.

We can help!

You're going to be okay! ;)

IrishHeart Veteran

I Just want to say Coming from a Newbie- This is the most informative thread I have read on here.

Irish Heart - Thank you so much for taking the time to type all of your information up!! it is so helpful And I wish I would've had your info a few months ago when I started on this journey :)

oh, sorry, hon! I have posted it from time to time to other threads started by Newbies. I wonder sometimes if it TMI?

I should probably put it somewhere on my profile page.

I wrote it up for my large extended family ---but no one seems to want it :unsure: and no one seems to think they need it.

(denial...not just a river in Egypt...) :lol:

JustNana Apprentice

Squimingitch

LOL

We could start a fan club....but Irish would probably be mortified. I'm thinkin' that we can honor her and Skylark and ...so many others on here whose names I cant recall, by asking questions, doing independent research, sharing our findings and experiences and most of all my being supportive of other newbies.

I'm almost 2 mos into this thing, about 2 weeks on this site. How 'bout you? :-)

Uhhhh...skooch over, your bowing is upstaging my scraping!

JustNana Apprentice

Alex, I have used the Beat Foods (Hellman's in the east). It's good! I love Mayo and ONLY Best Foods. (Hellman's where you live)

If it's not on your grocer's shelf, betcha could order it online!

Happy slathering. :-)

IrishHeart Veteran

Squimingitch

LOL

We could start a fan club....but Irish would probably be mortified. I'm thinkin' that we can honor her and Skylark and ...so many others on here whose names I cant recall, by asking questions, doing independent research, sharing our findings and experiences and most of all my being supportive of other newbies.

I'm almost 2 mos into this thing, about 2 weeks on this site. How 'bout you? :-)

Uhhhh...skooch over, your bowing is upstaging my scraping!

All right, knock it off, you two sillies! :lol: (mortified, hell no! I was more mortified you thought I was a dude.)

But, this is Olivia's thread.

Olivia--what else do you need? Squirmy and Nana are here to do your bidding. :) ... see how nicely they are bowing?

JustNana Apprentice

It's called Best Foods Canola!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,860
    • Most Online (within 30 mins)
      7,748

    Rena Celiac
    Newest Member
    Rena Celiac
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • 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    
×
×
  • 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.