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Minwaazhin

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Minwaazhin Newbie
Minwaazhin
Posted

Feels like a week ago but it's only been a couple of days since the Doctor told me that I dont have Crohns, Cancer, Lymphoma, etc...but..TA DA! Celiac Disease! The big wild goose chase was over. I felt happy to say "Ok. Now that your done messing with me and tons of antibiotics...what now?" Which...Im gonna be nice to the man...he only told me was to see a dietician and didn't really explain much beyond that. He made me feel horrible and told me that I probbably had this a lot longer but with all the stress from my miscarriage, my family, working full time while going to University full time started to make it symptomatic (with a vengance!!!!)...well..in between all that "blaming game" stuff..I did get some answers! LOL

But, now I got more questions..I was wondering...what now? I mean, where do u even begin to start this gluten free stuff if your last memory of the word gluten was in grade 10 cooking? I looked up some stuff on the net yet I still dont get it. There's just so much to take in. For example, vitamin supplements? immunity boosters (not like I need this by the way!)? Joint pain? Im still forbidden to take anything remotely close to aspirin and ibprophen so...what can I take?

Im confused hee hee hee. So basically...any good books you could recommend on this?

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Piccolo Apprentice
Piccolo
Posted

Welcome, I know it is overwhelming at first. Take a deep breath and take it slow. It will get easier. The best way to start out is just eat basic at first. An example is chicken, vegetable, rice, corn. Many newly diagnosed also react to dairy. Again welcome.

Susan

Canadian Karen Community Regular
Canadian Karen
Posted

Don't worry, take one day at a time and each day it will get easier! We have all been at the beginning of the road you are now on, and we are here to answer as many questions as you can fire away at us! Our motto here is there is no such thing as a silly question, so just fire away!

Where in Canada are you? I might be able to steer you in the right direction regarding foods, etc....

Hugs and Welcome!

Karen

alamaz Collaborator
alamaz
Posted

You are where I was three weeks ago and the response you got from your doctor is very similar to what I heard. It is SO overwhelming. Then I got it down for a week and now the past two weeks have been miserable. It's such a roller coaster. A good book to start with is "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. It's informational but easy to read. Another book I found to be okay to start out with easy recipes was "Beyond Rice Cakes: A Young Persons Guide to Cooking, Eating and Living Gluten Free" by Vanessa Maltin.

I would definitely recommend seeing a nutritionist. Don't just use the one your doc. recommended if you can find one locally that specializes in working with Celiac patients. I've been waiting for my appt. which is still two weeks away but I'm told she is one of the best where as the person my doc. recommened barely knew the definition. They will help you sort out the supplements stuff. For now, continue taking whatever you've been taking (if anything) but make sure it's gluten-free. It is so easy to get confused researching on the internet. One site says one thing, another site says another and you'll hear different opinions from just about every direction. The easiest thing I can say is do what works for you.

As for cooking- the first week I started feeling really good I had made a lot of easy on the stomach soups and chicken and rice casseroles with veggies. The only sweet snack I had was a bit of chocolate bar for dessert but I've since eliminated that. The best advice I got was to not go gung ho on the gluten-free products on the market at first. There will be plenty of time to try those!

Amy

ArtGirl Enthusiast
ArtGirl
Posted

Welcome to the forum - and welcome to the gluten-free life!

What others said - it gets easier. It's like learning a new skill, just takes some time to absorb all the informatino.

A good place to start is right here, reading threads. If you have to pay out of pocket for the nutritionist, you might want to save your money. After a couple weeks of reading information here on this forum you'll know more than they will.

Also, on the main section of Celiac.com is tons of information and recipes.

Celiac.com Site Index

And, of course, the website of Celiac Sprue Associatino

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johnsoniu Apprentice
johnsoniu
Posted

"Living Gluten Free for Dummies" and "Wheat Free, Worry Free" by Danna Korn are excellent books for getting started.

Welcome to the board, you've found the best source for info right here. Lots of knowledge and helpful people here. Made my first month gluten free a heckuva lot easier.

Ask lots of questions, that's what we're here for. B)

VioletBlue Contributor
VioletBlue
Posted
You are where I was three weeks ago and the response you got from your doctor is very similar to what I heard. It is SO overwhelming. Then I got it down for a week and now the past two weeks have been miserable. It's such a roller coaster. A good book to start with is "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green.

I second the Peter Green book. I just bought it off Amazon and I can't put it down. Granted someone with Celiac would probably not find it so fascinating. But it's well written and easy to understand so far.

violet

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zansu Rookie
zansu
Posted
your last memory of the word gluten was in grade 10 cooking?

at least you HAD heard about it! but of course they were probably taking about kneading the bread to build up that good gluten! :lol:

you get used to the restrictions, where gluten tends to hide, etc. Being on this forum has definately furthered my education - -who knew I had to worry about charcoal! :o

personnally I used the on-line gluten-free product lists and read a lot of labels and stayed away from anything questionable. But I'm a pragmatic, "just do it" kind of person. I researched for a couple of weeks before I committed, and then went for it.

This forum has a lot of helpful info and a search feature to check on past items. Good luck, and we're here when you need us for info or venting!

Minwaazhin Newbie
Minwaazhin
Posted
  • Author

:lol: I'm taking the biggest biggest "big breath in, slowly let it out" I got. It is overwhelming but yeah...I know I'll get there. I did have a good laugh though when I went out to get some chips (Wedesday is movie night). I was reading the back when my niece asked what I was doing and I explained it to her. Then she turned to me and said "Wow Iya...your one expensive person now huh?" She was looking at the prices for bread and stuff. It was cute!!!!

But thanks! I'll go grab those books. Books are always so much easier to understand (for me anyways). Its going to take some time and adjusting and I know that but...it still feels crazy. Not the coo coo crazy but the "ok...Im going over here now" crazy.

Thank you all for your wonderful advice. Someone said something about charcoal...I never knew that either! :lol: I'm def into the whole books for dummies things. Its nice not to feel as out of it as I felt a couple of days ago. I dont know if this is going to make sense but for me...its like I got a direction to go towards and a place I can ask questions of people who know and may have lived what the hang Im talkin about :lol: Its something tangible and not something I cant see type of deal anwyays ;)

And for Karen, I live in Northern Quebec on the Border with Ontario. :lol: Prolly why I speak english instead of french hee hee hee

kimchi Newbie
kimchi
Posted

Hi, and welcome!

I live in Quebec too, in Chelsea, which is very close to the Ontario border at Ottawa. Feel free to email me if you want any 'Quebec-centric' resources/advice!

Cheers,

Kim

johnsoniu Apprentice
johnsoniu
Posted

Also, if you're wondering about multi-vitamins and other medicines, here is an excellent link:

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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