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
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.