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

Help!

koch

By koch
in Coping with Celiac Disease

Recommended Posts

koch Newbie
koch
Posted

I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:

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

Celiac.com Sponsor (A8-M):


francelajoie Explorer
francelajoie
Posted

Don't panic. Take your time and learn about what you can and cannot eat. After a while, it becomes second nature. This site is the best thing that ever happened to me. I learned alot from people who know alot!!

Take time and read some topics that worry you. Don't be scared to ask questions. You usually get a reply in no more than an hour.

CMCM Rising Star
CMCM
Posted
I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:

Your doctor obviously knows next to nothing, and I'm a huge believer in self knowledge....so my suggestion is for you to take control of all this by thoroughly educating yourself.....very easy to do because there are some GREAT books out there, and this forum is also a HUGE resource. I've put together a list of 5 books which I myself just read over the last month and which vastly increased my overall understanding of what I'm up against. Knowledge is power.....when you first get the diagnosis you feel helpless and powerless, and knowledge and understanding immediately gives you back some power. You won't have to depend on a clueless doctor to direct you, and after all, how can he? He doesn't know anything! I imagine your doctor already gave you all he is going to give you....that pathetic little two-page list. Shame on him.

In any case, I'm going to paste in the 5 books I recommend you buy and read right away. All of them together won't cost much....I think the first 4 of them are $9.72 each, and the newest one is $14.92 on Amazon. I've provided all the links, and you can go to each one and read all the reviews. I found every single one of them worth reading because while the theme is the same, their approach is different and they all provide different information. All very easy, non-technical reading, too. These books will tell you 1000% more than your doctor did! And you'll know more than he does when you're done reading!

By the way, these are just the books I have read and can recommend. Other people may recommend additional ones that I haven't discovered yet!

_______

CELIAC/GLUTEN RECOMMENDED READING LIST

Recommended reading on Celiac Disease w/links on Amazon. You can go to each book listing and read the book review as well as reader reviews to get an idea about them. I read all of these front to back and found them all very useful in different ways. I think “Dangerous Grains” was probably the most eye-opening. I can recommend them ALL because they all contribute to your overall knowledge and understanding of celiac disease. If you got all of these, you would spend slightly less than $55 including shipping (free over $25). The best $$$ you could spend!

1. Dangerous Grains by James Braly and James Hoggan $9.72

Open Original Shared Link

_____________

2. Going Against the Grain: How Reducing and Avoiding Grains Can Revitalize

Your Health, by Melissa Diane Smith $9.72

Open Original Shared Link

_____________

3. Wheat Free, Worry Free—The Art of Happy, Healthy Gluten Free Living

by Dana Korn $9.72

Open Original Shared Link

___________________

4. A Personal Touch On.....Celiac Disease (The #1 Diagnosed Intestinal Disorder)

] by Peter R. Berlin & Jerry Stone $9.72

Open Original Shared Link

______________

5. Celiac Disease: A Hidden Epidemic by Peter H.R. Green (just published) $14.92

Open Original Shared Link

To make finding most of these easier, just go to amazon and in the search box put the words "Dangerous Grains", and a page will come up with most of them on it. I think you have to search for the new one (Green’s book) separately if you don’t want to paste in the direct link. Also "Personal Touch" doesn't show up easily either.

GO READ!!! :):):)

jerseyangel Proficient
jerseyangel
Posted

Hi--you've come to the right place! Most of us can relate to the doctor telling us 'you have Celiac Disease--go on the gluten-free diet' and not much else. A good place to start is to look over a safe and forbidden food list--there is one right on this site. Just go to the Site Index on the left of your screen and scroll down to that list. There is a lot of other good info. to be found there, too. Beyond that, you need to make sure that your personal care products and medicines are gluten-free. Go through the kitchen and replace any scratched teflon pans, toaster, wooden utensils and cutting boards and collander. Put your gluten-free foods on their own shelves, and always watch out for crumbs! If you are female, you need to check on your makeup--especially lip products. A big source of cross contamination is eating out. That is best kept to a minimum at the beginning while you are healing. Feel free to ask anything--there are a lot of very knowledgeable people here who have been through this themselves. Now, take a deep breath--it really is not so bad :)

koch Newbie
koch
Posted
  • Author
Your doctor obviously knows next to nothing, and I'm a huge believer in self knowledge....so my suggestion is for you to take control of all this by thoroughly educating yourself.....very easy to do because there are some GREAT books out there, and this forum is also a HUGE resource. I've put together a list of 5 books which I myself just read over the last month and which vastly increased my overall understanding of what I'm up against. Knowledge is power.....when you first get the diagnosis you feel helpless and powerless, and knowledge and understanding immediately gives you back some power. You won't have to depend on a clueless doctor to direct you, and after all, how can he? He doesn't know anything! I imagine your doctor already gave you all he is going to give you....that pathetic little two-page list. Shame on him.

In any case, I'm going to paste in the 5 books I recommend you buy and read right away. All of them together won't cost much....I think the first 4 of them are $9.72 each, and the newest one is $14.92 on Amazon. I've provided all the links, and you can go to each one and read all the reviews. I found every single one of them worth reading because while the theme is the same, their approach is different and they all provide different information. All very easy, non-technical reading, too. These books will tell you 1000% more than your doctor did! And you'll know more than he does when you're done reading!

By the way, these are just the books I have read and can recommend. Other people may recommend additional ones that I haven't discovered yet!

_______

CELIAC/GLUTEN RECOMMENDED READING LIST

Recommended reading on Celiac Disease w/links on Amazon. You can go to each book listing and read the book review as well as reader reviews to get an idea about them. I read all of these front to back and found them all very useful in different ways. I think “Dangerous Grains” was probably the most eye-opening. I can recommend them ALL because they all contribute to your overall knowledge and understanding of celiac disease. If you got all of these, you would spend slightly less than $55 including shipping (free over $25). The best $$$ you could spend!

1. Dangerous Grains by James Braly and James Hoggan $9.72

Open Original Shared Link

_____________

2. Going Against the Grain: How Reducing and Avoiding Grains Can Revitalize

Your Health, by Melissa Diane Smith $9.72

Open Original Shared Link

_____________

3. Wheat Free, Worry Free—The Art of Happy, Healthy Gluten Free Living

by Dana Korn $9.72

Open Original Shared Link

___________________

4. A Personal Touch On.....Celiac Disease (The #1 Diagnosed Intestinal Disorder)

] by Peter R. Berlin & Jerry Stone $9.72

Open Original Shared Link

______________

5. Celiac Disease: A Hidden Epidemic by Peter H.R. Green (just published) $14.92

Open Original Shared Link

To make finding most of these easier, just go to amazon and in the search box put the words "Dangerous Grains", and a page will come up with most of them on it. I think you have to search for the new one (Green’s book) separately if you don’t want to paste in the direct link. Also "Personal Touch" doesn't show up easily either.

GO READ!!! :):):)

tarnalberry Community Regular
tarnalberry
Posted

Welcome. I'm glad you found the board.

It will take a little while to adjust to the gluten-free diet, figuring out what you can have, and what you wan't to have. In the mean time, I encourage you to stick to whole, naturally gluten-free items, like fresh fruits and vegetables, rice, beans, plain meats, eggs, nuts, and dairy. Read the information you have, read the information on this forum, read whatever you can. And then read every label for anything you might ever eat!

And come back and ask lots of questions! :-)

nessa Newbie
nessa
Posted

:( aww man that sucks! it'll be okay though. Basically it's easier if you just think more along the lines of what you can't eat than what you can. Don't eat anything with wheat or barley or rhy in it, there's some others, like I think sorghum is out, but who eats that anyway? If it's too confusing grab some rice crisps (check the ingredients to screen for wheat first) caramels my favorite; some tostitos lime corn chips, and lots and lots of popcorn. Anything familiar that'll take the edge off the hunger, cuz you're gonna be exposed to a LOT of really weird tasting food once you start trying to find bread and stuff. That requires going to the whole foods store or looking online. Just time in gluten free in google and a bunch of stuff comes up. You'll get the hang of it. It's just aggrevating to not be able to eat your favorite foods anymore. But hang in there and get creative it'll be okay.

I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Nessa--Welcome! Actually sorghum is fine for those on a gluten-free diet. Enjoy Life Foods uses it in some of their cookies and things, and it is a good alternative flour for those who are intolerant to rice. Just wanted you to know so you wouldn't have to "watch out" for that, too. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,635
    • Most Online (within 30 mins)
      7,748
    dysmathers
    Newest Member
    dysmathers
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      Thee

      By Inkie · Posted

      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • 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.