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

Recommended Posts

skoki-mom Explorer

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

Hello Lori.

higgins Newbie

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

hez Enthusiast

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

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

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

Hello, and welcome to the group!


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



Celiac.com Sponsor (A8-M):



Felidae Enthusiast

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

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

Karen

Canadian Karen Community Regular

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

Karen

Felidae Enthusiast

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

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
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
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
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
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
  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.

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    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. - 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.

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

    • Total Members
      133,337
    • Most Online (within 30 mins)
      7,748

    Susan1001
    Newest Member
    Susan1001
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.