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

Hi All, I'm New Here.

skoki-mom

By skoki-mom
in Coping with Celiac Disease

Recommended Posts

skoki-mom Explorer
skoki-mom
Posted

Hi all, I'm new here. My name is Lori, I live in Canada, I'm 35 and I just got my diagnosis confirmed on Thursday via endoscope. I hope I can find some good discussions and support here.

My older sister (2 years older) broke her hip in January, and to make a long story short, they found out she has bad osteoporosis and in efforts to figure out why, they found out she has Celiac. Looking back, she had all the classic symptoms, but said she just figured that was "normal for her".

Anyhow, being the good little nurse/sister that I am, I got screened and the darn thing came back positive. I must admit, I'm a little bit peeved because every member of my family but me has bowel issues and I'm the only one with a + screen. I'm totally subclinical, but the bloodwork and endoscopy came back conclusive, so here I am. This is probably really twisted, and I don't mean to offend anyone, but I think it's a freaking cruel joke by God that I have Celiac and I don't even get the advantage of being skinny. I'm about 20 lb overweight, and when my dr told me that a gluten-free diet would probably make me gain wt, well, that's the only time I broke down and cried about it. Also, had a cry on my way to church this morning when I realized I can't partake in the sacrament of Holy Communion anymore.

OK,well, I am totally rambling now. Looking forward to getting to know some of you.

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Hello Lori.

higgins Newbie
higgins
Posted

Hi Lori. Welcome to the gang. I live in BC; where are you?

hez Enthusiast
hez
Posted

Hi Lori! I am new here as well. I know exactly how you feel about communion. For a month I would go up to the alter sobbing because I could not partake. Luckily for me our priest is a wonderful and caring man and could not stand to see me cry. We have been using rice crackers for communion. I have my own separate plate (not the right technical term) to keep my host separate. I am Episcopalian so the wheat in the host is not an issue as it is in the Catholic Church. I have found this board very helpful and I know you will to.

jknnej Collaborator
jknnej
Posted

H Lori.

I don't know who told you you would gain weight, but I can tell you that immediately AFTER going gluten-free I lost 15 pounds without even trying and have kept tht weight off ever since. Wheat bloats you out; hence, not eating wheat will help you lose weight....unless of course you're pounding ice cream every night!

Having celiac disease isn't as bad as you think. There are TONS of things you can eat, places to eat out, etc. I felt just like you 8 months ago; now I can't remember what all the fuss was about.

This board is the best support group you will ever need. We are here 24/7. There are lists on what to eat, how to eat, how to cope, everything under the sun.

Good for you for getting screened, by the way.

I am Catholic as well and understand the communion issue, but I picture Jesus as loving and understanding and I don't think my place in heaven will be compromised if I don't eat a piece of wheat. You can still take place in the ritual, just don't eat the wafer. I can see why this would be hard but I personally believe it's about what's in your heart, not your stomach.

Make sure you check all your hair, skin, and beauty products (make-up) when going gluten-free. Don't forget about hidden sources like soy sauce, vinegar (you can have distilled and other types), and seasonings. In most restaurants if you order meat you need to make sure to tell them not to put seasonings or grill bastes on your food unless you know they are gluten-free.

You'll learn and we'll help you. Try to stay positive but even if you can't we're still here for you to vent-LOL. We all have our days when we curse this disease but overall we still enjoy perfectly happy gluten-free lives. I even am thankful b/c I feel so much better now and know I am healthier.

Hope this help and welcome,

Jennifer

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Lori! Welcome to the board!!! I am also from Canada (hence my handle!! :P )

I am in Ontario, in the Durham region, just outside of Toronto.

Just wanted to let you know that there is no such thing as a stupid question on this board. We have all been there and know how overwhelming it can be at the beginning. Just post away and there's a bunch of really great people here who will help whichever way we can!

Karen

tarnalberry Community Regular
tarnalberry
Posted

Hello, and welcome to the group!

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

Celiac.com Sponsor (A8-M):


Felidae Enthusiast
Felidae
Posted

I just joined too and I am also from Canada. I'm pretty close to your age Lori. What a strange thing to find out you can't eat gluten when you are in your 30's.

Canadian Karen Community Regular
Canadian Karen
Posted

Welcome to you also Felidae!!! Where in Canada are you from?

Karen

Canadian Karen Community Regular
Canadian Karen
Posted

Oh, and Lori, "skoki mom" wouldn't mean you are from Muskoka, would it?

Karen

Felidae Enthusiast
Felidae
Posted

I am from Alberta. I've been reading the various posts for awhile and I decided I should join. I was diagnosed with IBS but nothing seemed to help the D until three months ago when I went gluten-free. It has been getting better every day. My blood tests were negative so my doctor didn't really think that the gluten-free diet would be successful. Anyway that's enough rambling.

Canadian Karen Community Regular
Canadian Karen
Posted

Goes to show you how much doctors understand the damage gluten can do to the human body.

Oh, on this forum, IBS stands for "I'm basically stumped".....that's what the doctor diagnoses when he can't figure out what is wrong with us!!! lol!!! :)

Rachel--24 Collaborator
Rachel--24
Posted
Oh, on this forum, IBS stands for "I'm basically stumped".....that's what the doctor diagnoses when he can't figure out what is wrong with us!!!  lol!!!  :)

<{POST_SNAPBACK}>

:lol: I hadn't heard that one before...funny.

Welcome to the board Skokimom :)

skoki-mom Explorer
skoki-mom
Posted
  • Author
Hi Lori.  Welcome to the gang.  I live in BC; where are you?

<{POST_SNAPBACK}>

Hi there, thanks for the welcome. I live in Calgary.

skoki-mom Explorer
skoki-mom
Posted
  • Author
Hi Lori!  Welcome to the board!!!  I am also from Canada (hence my handle!! :P )

I am in Ontario, in the Durham region, just outside of Toronto.

Just wanted to let you know that there is no such thing as a stupid question on this board.  We have all been there and know how overwhelming it can be at the beginning.  Just post away and there's a bunch of really great people here who will help whichever way we can!

Karen

<{POST_SNAPBACK}>

Hi Karen,

Nice to see another Canadian here. Maybe you can help me with Canadian restaraunt chains when I decide to venture beyond the salad or baked potato. I have no idea if I have eaten gluten or not, I swear I could drink battery acid and not feel anything. I've never shown a symptom of this disease in my life. My mother said she remembers this one time when I was about 7 and we went on a hike and I said I had a stomach ache, she is thinking now that was a sign :blink: Anyhow, in some ways it's great to not actually feel ill, but in other ways, my gut could still be wrecked and I wouldn't even know it. Maybe when I am gluten-free for awhile I will become more sensitive, who knows. I am sort of holding out a vague hope that by being gluten-free my other allergies will get better (dogs, cats, stuff like that), but not holding my breath.

skoki-mom Explorer
skoki-mom
Posted
  • Author
Oh, and Lori, "skoki mom" wouldn't mean you are from Muskoka, would it?

Karen

<{POST_SNAPBACK}>

Nope! Skoki is a reference to the Skoki Valley near Lake Louise :) My ex and I met skiing at LL, our girls both have namesakes from the area so I use Skoki even though I am more than happy to be rid of ex!!! My girls and I are getting our pictures taken at Lake Louise this fall, I can hardly wait! BTW, I think my 4 year old probably has celiac disease too. Lots of complaints of "my tummy hurts" and the odd bout of diarrhea. I decided to get my own biopsy first, because if she has + anti-endomesial antibodies, I won't put her through the biopsy, I think the + blood test with the family hx is enough. I'm hoping it might be stress-related because of the divorce (as opposed to celiac disease), but you have to be realistic. Otherwise, she is normal growth and development and I wish I had a fraction of her energy!! She is getting her 5th birthday cake (Sept 5) before I get her tested at her annual check up!

drewsant Rookie
drewsant
Posted
  This is probably really twisted, and I don't mean to offend anyone, but I think it's a freaking cruel joke by God that I have Celiac and I don't even get the advantage of being skinny.  I'm about 20 lb overweight, and when my dr told me that a gluten-free diet would probably make me gain wt, well, that's the only time I broke down and cried about it.  Also, had a cry on my way to church this morning when I realized I can't partake in the sacrament of Holy Communion anymore. 

OK,well, I am totally rambling now.  Looking forward to getting to know some of you.

<{POST_SNAPBACK}>

Hi Lori. I'm pretty new to this too--2 months into it, and I can tell you I've been overweight since I was about 13 years old, even having diarrhea all the time. Since going gluten-free I've lost a lot of weight. I don't know how much, but I've gone down a pants size, and lost about 15 inches so far. I still have a long way to go, but I'm seeing a difference. I wish I could weigh myself, but I'm disabled on crutches, so I can't steady myself on a scale long enough to get an accurate weight, so I have to go by size. I can't fathom why the doctor would tell you you would gain weight when you are basically forced to eat fresh fruits and vegetables and plain meats.

I was diagnosed a long time ago as having IBS, or as the the doctor so aptly put it "DIIK" (Damned if I know) as the diagnosis. :D

Archived

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

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


  • Member Statistics

    • Total Members
      132,395
    • Most Online (within 30 mins)
      7,748
    Jessicarenee
    Newest Member
    Jessicarenee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.