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

I Have Just Been Diagnosed With Celiac


metsfan11

Recommended Posts

metsfan11 Newbie

Hello everyone! My name is Jesse and I have just been diagnosed with Celiac Disease. My mother just told me, and to be honest, I have mixed emotions. I am not sure how to deal with it. We just bought all of the gluten free food. I am scared that I have to deal with this for my entire life. I wonder if I can survive being thrown into this new world of no bread. I can't imagine not being able to ever eat a bagel again. It is really shocking to me, and I am truly scared. How did everyone feel when they had just found out? I really appreciate all of the support, and I am really glad that I found this site. Thanks! :)


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



Celiac.com Sponsor (A8-M):



Lymetoo Contributor

Welcome! If you'll read my signature below, you'll see that I've had trouble for quite awhile and so it's not such a shock to me. I've been "wheat free" mostly for the past 30 yrs. So I'm rather used to it.

Going completely gluten free is a bit different........but I'm feeling so much better that I'm willing to stick with it.

Were you having really bad symptoms?

psawyer Proficient

Hi, Jesse,

Welcome to our community.

My first thoughts on learning about celiac disease were similar to yours. But it isn't like that.

There are a number of gluten-free bakeries making all kinds of products. You can still have bread, muffins, pancakes, waffles, pizza, bagels and other baked goods, all made from gluten-free flours. You can bake your own as well. I buy many baked products from Open Original Shared Link. There are a number of other sources of baked goods.

Gluten-free beer exists as well. In Canada look for la messagere; others are available regionally in the US.

It will take some time to learn about the diet, but over time it will become easier. I have been doing it for over six years. It seemed difficult at first, but once I had been on the diet for a while the change in my health was dramatic. I will NEVER go back to eating gluten.

metsfan11 Newbie

I appreciate the support. I have been reading through the forum and around the web, and it seems that whoever is on this gluten free diet seems to be much healthier and happier, and I hope that is the case for me

Were you having really bad symptoms?

My symptoms, since I was little, was that I couldn't tolerate dairy. During the day, I could eat lots of cheese and milk, but at night, it was a different story. I would have a terrible burning sensation, and usually vomit. I assumed it was acid reflux disease, but once we got tests done we realized it was celiac disease.

olalisa Contributor

welcome, Jesse!

I know how overwhelming it feels when you first get diagnosed. It took me a while to grieve, and sometimes I still tear up a little at pizza commercials. As for "fagels" (that's what I call my "fake bagels") the glutino ones are quite good, as are the kinnikinick (not sure I spelled that right). As for breads, make sure that whatever kind you choose, you toast it a little to make it edible....makes a huge difference.

It is a sharp learning curve, but you'll get there. And you're going to feel soooo much better, which makes it all worth it.

We're here for you. You'll get lots of info and support here. Never hesitate to ask questions :)

Viola 1 Rookie

Welcome to the forum. You are going to have a real learning curve, but you can always come here to ask any questions. There are many very experienced people on this board. They will help with the diet, emotions and how to deal with friends and family who may not understand.

They will also make you laugh, and that is very good medicine for Celiac disease :P

metsfan11 Newbie

Guys, I really can't express how happy I am to already have found others who have the same disease as me. When I first found out, it seemed like such a rare disease, and I figured that no one had it but myself. Thanks for proving me wrong! I look forward to my healthy future!


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



Celiac.com Sponsor (A8-M):



babygirl1234 Rookie

welcome and its hard at first but once you get the hang of it you will start to feel better and you be better off because you wouldnt be harming yourslef

Yenni Enthusiast

Welcome! It is all very overwhelming at first. I am pretty new into this still but it does get better. I try to think day by day. I LOVE candy and I can't even imagine that I can't ever have any again. So I don't think about it. I'll deal with it later and maybe I'll find other types that I can have instead.

This is a great place to get help, vent, what ever. This place if full of people that know what you feel.

Creative-Soul Newbie

Welcome! Change is never easy and having to adapt to something new can be overwhelming, especially when it ties into something as intrinsic to our way of life as food. It helps to, one, give yourself permission to grieve a bit, and , two, always focus on the fact that this is your way of managing your health and avoiding some other nasty health issues down the line.

It does take time, but it gets easier. Think of all the things that you can have, and how much better you'll feel. Don't hesitate to vent or ask any questions - no question is "too silly"!

quantumsugar Apprentice

Welcome! (to the disease and the board). It definitely feels overwhelming at first, but the change in health is huge. It's scary now, but after a while, it totally becomes second nature. Lakefront's New Grist beer is quite good (even my non gluten-free friends like it). If you're around a Whole Foods, their "Gluten-Free Bakehouse" line is my favorite for bread. I like to use a lot of rice and potatoes more than gluten-fakes... it's much cheaper.

Hope everything goes well with your transition. Good luck!

Rusla Enthusiast

Welcome to the site Jesse,

Prior to my finding out about this I had researched it back as far as 1975 because I had suspected that I had this disease. I researched it and never acted on it because I did not come across anything that said it was severly damaging to ones health. Of course great strides have been made in food since then. So, when I went gluten-free and was diagnosed it didn't seem that hard to me. The hardest part is being at work and eating in public. Other than that it is a gluten-free cake walk as opposed to a race to the bathroom.

There are some semi decent breads out there but mainly I avoid them. Bread is not that important to me.

JayT Rookie

It's not as tough as you think...there are many resources here that will help. Myself included.

dlp252 Apprentice

Hi and welcome!

Viola 1 Rookie
Welcome! It is all very overwhelming at first. I am pretty new into this still but it does get better. I try to think day by day. I LOVE candy and I can't even imagine that I can't ever have any again. So I don't think about it. I'll deal with it later and maybe I'll find other types that I can have instead.

This is a great place to get help, vent, what ever. This place if full of people that know what you feel.

Oh yes ... there is lots of gluten free candy out there! Cadbury, & Hershey put out quite a few gluten free bars and chocolates. Read the labels and watch for Malt flavouring amoung the obvious cookie stuff. Malt is a no no.

M&M's are gluten free ... the chocolate and peanut ones. :P

I think there should be a candy thread on here some where, I can remember reading it. A lot of the non-chocolate candy is gluten free as well. Most licorice is NOT gluten free unless you find the ones that are made special for us. I know there is some yummy gummy licorice bears out there, but quite expensive :(

metsfan11 Newbie

Thanks, everyone for the nice words.

I have a question, are Skittles ok to eat? They are my absolute FAVORITE candy, and since M and M's are gluten free and they are made by the same company, that is a good sign.

Thanks! :)

jerseyangel Proficient
Thanks, everyone for the nice words.

I have a question, are Skittles ok to eat? They are my absolute FAVORITE candy, and since M and M's are gluten free and they are made by the same company, that is a good sign.

Thanks! :)

Yep--Skittles are fine :D

metsfan11 Newbie
Yep--Skittles are fine :D

:D :D :D :D :D :D :D

(If you couldn't tell, I'm excited!!!)

olalisa Contributor

I'm right there with ya, Jesse! The first thing I checked after my diagnosis was M&M's and skittles :)

Proof that God loves us and wants us to be happy!!

whitball Explorer

Welcome to the forum! My advice to you is to read this forum. There is lots of support here. Also, keep it simple to start out with. Veggies, fruit, proteins, etc. Your gut will need to heal. Don't be in a hurry to rush out and find all of the gluten free stuff you can find. I did this and ended up not being ready for these things until recently. You will go through several stages of physical and emotional healing: Anger is a biggie and at some point you'll test out your old food habits "just to see". You'll regret it. You'll feel sorry for yourself, you will cry, etc, etc. Trust me, you will get to the point where you will be okay with this and have some fun too. Good luck.

tarnalberry Community Regular

Welcome to the board!

It seems overwhelming at first, but it really is not too bad once you get past the learning curve. Remember that the reason that you think it's hard to imagine never having bagles again is because that is what you're used to. If you had never seen a bagel in your life, you wouldn't think that way. That means that it's not some absolute that everyone has to eat bagels! And that there are other things to get into the habit of eating instead! It's a little harder, because other people will still eat them, but you have lots of other choices, and this board can help you find them! Until you find them (and how long it takes depends on how hard you look, what resources are available in your area, and how selective your tastes are), it may be tough, but there is light at the end of the tunnel!

debmidge Rising Star
Hello everyone! My name is Jesse and I have just been diagnosed with Celiac Disease. My mother just told me, and to be honest, I have mixed emotions. I am not sure how to deal with it. We just bought all of the gluten free food. I am scared that I have to deal with this for my entire life. I wonder if I can survive being thrown into this new world of no bread. I can't imagine not being able to ever eat a bagel again. It is really shocking to me, and I am truly scared. How did everyone feel when they had just found out? I really appreciate all of the support, and I am really glad that I found this site. Thanks! :)

...well not NYC style bagels anyway. There are reasonable substitutes but I do not know what they are. Kinnickinnick (a mail order bread company) has a good selection; so they might have a reasonable kind of bagel. Maybe others on board can tell of their "gluten-free bagel" experiences.

happygirl Collaborator

metsfan:

welcome to our celiac corner of the world. Amazingly, that corner is spreading!

You said that you felt like no one else had this. I think we all felt like that too! The latest research is that 1 in 133 Americans have Celiac Disease....and about 97% of those who have it, DON'T KNOW IT!

The National Institute of Health has actually just launched an initiative to help educate doctors about it, because they just don't realize how prevalent it is.

Being diagnosed is like a roller coaster....plenty of ups and downs. Sad to be diagnosed, but happy to have a name for it. Mad that you have it, but thankful its "treatable." Etc. Etc.

We'll help you get through it!

And yes, I like the above-mentioned bagels. I can get them at local health food stores. If they don't carry them, you can ask them and they probably will.

Also, many people on the board agree that Tinkyada pasta (its a brand that makes rice based pasta, instead of wheat based) is the best. They come in all shapes and sizes. We use them all the time and LOVE it. We even serve it to non-Celiacs (my husband eats it all the time).

Stick around :)

Laura

metsfan11 Newbie

Thanks again everyone. I just had my first gluten-free meal. I had chicken and some gluten-free pasta (I forgot the brand). The pasta tasted pretty good, it was a little tough but I got used to it. Overall, I am satisfied.

I also found these really good pretzels. They taste exactly the same!!!! :)

Amethyst* Newbie

I was diagnosed a year ago and as a freshman in college. It hit me hard. I couldn't imagine life without bread or pizza and all that good tasting stuff. Two months into a gluten free diet it hit me: I no longer felt like I was a hundred years old every single day. It didn't hurt to move. My stomach was sooo much better. I honestly hadn't known any different since I had delt with it my whole life. I think at one point or another all celiacs want to grab a slice of pizza or something filled with gluten, but after being on the gluten free diet you realize you just don't want it anymore. The beginning of the diet stinks, nobody can lie about that. After you adjust to it and find other methods of cooking foods you like (which are also usually alot healthier ) you just get to a point where you don't miss the gluten anymore! Good luck with the transition!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.