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

Just Diagnosed!

sweetpomme

By sweetpomme
in Coping with Celiac Disease

Recommended Posts

sweetpomme Newbie
sweetpomme
Posted

Hi everyone :)

I am 26 years old and was just diagnosed with Celiac Disease, I plan on meeting with a nutritionist soon.

I was wondering how you made the changes with your diet - did you change all of your diet at once or did you slowly change your eating habits?

thank you and talk to you soon !! :)

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Hi everyone :)

I am 26 years old and was just diagnosed with Celiac Disease, I plan on meeting with a nutritionist soon.

I was wondering how you made the changes with your diet - did you change all of your diet at once or did you slowly change your eating habits?

thank you and talk to you soon !! :)

Welcome to the board.

 

I changed my diet as soon as possible. I did not finish off any gluten products but gave them away instead.  It took me about a week to be sure that my home was gluten-free.

julissa Explorer
julissa
Posted

I too went cold turkey. learned as much as I could about hidden gluten, things to look for in ingredients. I slowly started changing over my kitchen. everything I learned, I learned about here. read, read, read.

 

good luck! 

bartfull Rising Star
bartfull
Posted

Yep. The sooner you quit, the sooner you will be healthy again. Do go to the Newbie 101 thread in the coping section here to learn how to avoid cross-contamination and so much more.

 

It may sound crazy, but congratulations on your diagnosis. You can now control your health without surgery or medication. A simple change in your diet and you can avoid the complications so many of us have been through.

ravenwoodglass Mentor
ravenwoodglass
Posted

Agree with the others. You need to stop not taper. Tapering off will not make the process any easier and will keep the antibodies and thus your symptoms active. 

Welcome to the board.  Hope your feeling better soon. 

CathyO Rookie
CathyO
Posted

I am 60 and was diagnosed just this year.

 

I was so sick that I immediately cleaned out my entire pantry. Donated any foods with gluten. Got a new toaster. Threw away all my wooden spoons, etc. etc.  I was terrified to eat any gluten, because all accidental gluten exposure made me extremely ill.  I ate at home all the time for probably the first 3-4 months. 

 

I'm still very cautious about eating out.

 

I do have a 12 year old at home, and he has a small bottom shelf area in the pantry for some snacks. We have established strict rules about foods with gluten and where he can eat them and what he needs to do to clean up after himself.

 

All the meals we prepare for the family are gluten-free.

I'm kind of an all or nothing kind of person when it comes to gluten-free.

 

I've learned a lot from reading online, and even more in this group. 

sweetpomme Newbie
sweetpomme
Posted
  • Author

Thank you everyone for your help! I thought it would be easier for me to make changes slowly but as I'm reading your advice, it feels like it's going to be easier to do it all at once, especially with all the precautions needed to avoid the cross-contamination. I am reading a lot of posts on the forum today and rented a few books about getting gluten-free. Did any of you consult a nutritionist, or did you just get all the information needed in books/internet?

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

Celiac.com Sponsor (A8-M):


CathyO Rookie
CathyO
Posted

Thank you everyone for your help! I thought it would be easier for me to make changes slowly but as I'm reading your advice, it feels like it's going to be easier to do it all at once, especially with all the precautions needed to avoid the cross-contamination. I am reading a lot of posts on the forum today and rented a few books about getting gluten-free. Did any of you consult a nutritionist, or did you just get all the information needed in books/internet?

My education has been books, this site, a few other sites and other people I know with Celiac.

I live in a pretty rural area with a teeny hospital. There's not a nutritionist who works with celiac disease within a couple hours of me.

If you have access to a nutritionist who can help? I'd go for it. Knowledge is power, and the more you know the easier this change will be for you.

nvsmom Community Regular
nvsmom
Posted

Thank you everyone for your help! I thought it would be easier for me to make changes slowly but as I'm reading your advice, it feels like it's going to be easier to do it all at once, especially with all the precautions needed to avoid the cross-contamination. I am reading a lot of posts on the forum today and rented a few books about getting gluten-free. Did any of you consult a nutritionist, or did you just get all the information needed in books/internet?

 

Unless your nutritionist is knowledgeable on celiac disease or the gluten-free diet, they may not be a lot of help.  I've heard very mixed reviews on seeing a nutritionist.

 

Basically, for me it boiled down to the fact that it is healthier to limit your gluten-free substitute foods as they tend to be less healthy than wheat flour foods.  For example, prepackaged gluten-free bread is generally less healthy than normal bread because most flours are fortified with vitamins and tend to have a bit more fibre. Also gluten-free baked items tend to have a higher glycemic index and convert to sugar very quickly in our bodies.

 

Usually the healthiest option is to not replace your "glutenous" foods.  If you are having cheese and meat sandwich, then skip the bread and just eat the insides or use a rice wrap.  Noodles can be substituted with rice noodles but an even healthier solution is spaghetti squash. gluten-free muffin mixes are often like dry cupcakes; its better to use almond or coconut flour and skip the rice flours and starches when you can.... You see what I mean?

 

If you read a few books, I'm sure you'll find most of what you need, including a list of unsafe ingredients like this one:https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/  It is handy to carry a list like this around in the first few months.

 

Also, about half of all celiacs are lactose intolerant while they are healing during the first 6 months or so.  It is often a good idea to skip dairy if you feel that you are still having problems.

 

The first few months are definitely the hardest.  Just hang in there.  :)

SMRI Collaborator
SMRI
Posted

I stopped as soon as my GI told me to.  I was diagnosed in June but they told me to wait until July after follow-up appointments to stop in case they needed to do more testing.  I spend most of July eating things I knew I couldn't have any longer LOL :D.

 

I went to a nutritionist.  She was helpful but I have gotten more information from this site.  After my visit I discovered that she was not covered under my insurance so it's kind of wasted money unfortunately. I'd double check your insurance just in case.

notme Experienced
notme
Posted

here is some very helpful info:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

i was recommended to see a dietitian - insurance would pay - called for an appointment:  sure, see ya in 2 weeks...  

 

*blink*  what?  sooo, what am i supposed to eat for two weeks??!!  my husband googled and he found this site.  i cancelled my appointment a few days later.  pretty glad i did being as the next time i went to my g.p. for my blood pressure check-up, the nurse practitioner didn't even know what celiac was.  she looked at me all stupid when i said i replaced my lip gloss and said, "what do you do?  eat it?"  o, boy   <_< so, personally, i have better faith in people who actually have to live gluten free every day.

 

welcome and good luck  :)

CathyO Rookie
CathyO
Posted

here is some very helpful info:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

i was recommended to see a dietitian - insurance would pay - called for an appointment:  sure, see ya in 2 weeks...  

 

*blink*  what?  sooo, what am i supposed to eat for two weeks??!!  my husband googled and he found this site.  i cancelled my appointment a few days later.  pretty glad i did being as the next time i went to my g.p. for my blood pressure check-up, the nurse practitioner didn't even know what celiac was.  she looked at me all stupid when i said i replaced my lip gloss and said, "what do you do?  eat it?"  o, boy   <_< so, personally, i have better faith in people who actually have to live gluten free every day.

 

welcome and good luck  :)

 

Wow. Not at the 2 weeks part, because around here it takes months to get an appointment with anyone for anything.

 

I see a nurse practitioner regularly, and I must say that mine is a lot more knowledgeable.  She's given me a lot of resources and talked about probiotics with me, and made suggestions to me.  She even reads things I bring her and thanks me for them. 

 

notme Experienced
notme
Posted

i was very underweight i wonder if they worked me in?  i needed help before that, lolz!  i never have made an appointment with one before or since, so i don't know what is the norm. are you in the us, cathy?  i see my GI every 6 months and he knows his stuff.   their office is pretty good about letting me come in for tests without an appointment.  i just have to call ahead so they can pull my chart.   

CathyO Rookie
CathyO
Posted

i was very underweight i wonder if they worked me in?  i needed help before that, lolz!  i never have made an appointment with one before or since, so i don't know what is the norm. are you in the us, cathy?  i see my GI every 6 months and he knows his stuff.   their office is pretty good about letting me come in for tests without an appointment.  i just have to call ahead so they can pull my chart.   

 

I am in the US.  A small rural area, with limited medical services.   It took 3 months to get an appointment with a GI locally.

Then another 3 months to schedule an endoscopy.  It's a nightmare.

1desperateladysaved Proficient
1desperateladysaved
Posted

I did taper off gluten over a few days, longer if one counts the flavoring that I didn't read the label on.  My first tier was major food groups.  I didn't eat bread, or use any gluten flours in my cooking.  I got my kids to take certain large quantities of grains out of the kitchen.  There was a box of gluten in the pantry for a much longer time, but it wasn't being used.  Then I started being more concerned about cross contaminated goods in my food supply.  That meant I started calling companies about how they produced their products.  In this tier I checked my supplements, and had my family remove more grain products from the kitchen.  The next tier I checked my shampoo and conditioner (already gluten free!)  Oh, and last of all I checked pet foods, dish soaps, and laundry soap.  I recommend studying if you are in limbo or gluten challenge and beginning to switch minor products as soon as they need replacing.  Just don't forget to keep eating gluten until testing is done.

Archived

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

Go to topic listing

  • 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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,542
    • Most Online (within 30 mins)
      7,748
    CC324
    Newest Member
    CC324
    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

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.