Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,509
    • Most Online (within 30 mins)
      7,748

    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Matt13
      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
    • Mr-Collateral531
      I have dealt with gallbladder issues on-and-off for about ten years now. I was diagnosed with biliary dyskinesia in 2016 but chose to keep my gallbladder. Then in July 2022, I was diagnosed with celiac disease. Your surgeon is partially right in that your gallbladder can definitely cause some of those issues. However, the flip side to the coin is celiac can cause issues with your gallbladder. It’s a lesser studied area of disease manifestation, but limited research has shown a correlation between celiac, gallbladder dismotility, and how a gluten-free diet can help increase the gallbladder ejection fraction. Which literally happened in my case. In 2016 my HIDA scan measured my gallbladder ejection fraction as 29%. Then in 2023 after going strict gluten free, my HIDA scan measured it as 100%. It’s not perfect. I get right upper quadrant pain from time to time still. But at least I got that piece of evidence for myself.  I haven’t found any empirical studies on it but I have a theory. The gallbladder stores your bile for digestion. When the food enters your small intestine, the cells of your duodenum secrete cholecystokinin (CCK). CCK is what tells your gallbladder to empty. It’s literally Greek for “bile sac move.” Since the duodenum is a prime location for epithelial cell damage in celiac, it seems very possible that this can alter production of digestive hormones like CCK. As the small intestine begins to heal it produces more CCK and therefore the gallbladder can once again function. If you care to share, why did you need to have yours removed? In regards to the low iron and low vitamin D despite supplementation, that is also common in celiac. I fought vitamin D deficiency for almost a year despite taking 5000 IUs a day. I don’t have anemia, but I know I can use more iron based on my last round of blood work. Best I can say is you need to right cofactors as well. My vitamin D level virtually stayed the same for three different blood tests all 12 weeks apart. One was even after taking the prescription vitamin D of 50,000 IUs once a week. Once again, something not all doctors seem to know, but a nutrient deficiency isn’t necessarily treated by just taking more of that nutrient. Vitamin D metabolism requires many cofactors and processes in the small intestine, liver, and kidneys. And iron metabolism requires many cofactors as well including vitamin D. The biggest thing is to find a supplement regiment that works for you. Do you take specific vitamins or do you take a multivitamin? How much iron is in the supplement you take? What type of iron is it? Do you take magnesium? Another big game changer for me was adding 450mg/day of magnesium supplements for about two months and then dropping to 200mg/day. I would take 250mg of magnesium aspartate at lunch time and then 200mg of magnesium glycinate around 7:00pm. Magnesium is a huge cofactor for both vit D and iron metabolism. And that’s just one. Zinc, copper, vitamin K, boron, vitamin B6, folate, vitamin B12, and vitamin C are all contributing cofactors to vitamin D and iron metabolism. But too much supplementing is also dangerous. I’ve also been through iron overload and zinc toxicity in my post-celiac journey. Once again, doctors just saying to do one thing without considering anything else. I hope this helps and if you have any more questions don’t hesitate to ask.          
    • trents
      Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.
    • dublin555
      Karen, that sounds really tough. You must find both RA management and your new gut problems extremely irritating to handle at once. Together with your pain relief you still experience ongoing bloating complications that drag on without a resolution. Of course visiting a doctor to obtain a proper celiac diagnostic evaluation becomes necessary when no formal diagnosis has been received. Your journey toward recovery has been lengthy yet it brings comfort to notice your progress during this time. This support group offers you valuable help because there are people experiencing the same concerns with you. Working through your issues will be easier.
×
×
  • Create New...