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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 !! :)

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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?

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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.

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