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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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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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