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

Eeek!


Minwaazhin

Recommended Posts

Minwaazhin Newbie

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?


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



Celiac.com Sponsor (A8-M):



Piccolo Apprentice

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

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

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

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

Open Original Shared Link

johnsoniu Apprentice

"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
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


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



Celiac.com Sponsor (A8-M):



zansu Rookie
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

: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

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

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

Open Original Shared Link

Archived

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

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

    • Total Members
      133,017
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.