• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Writing A Book
0

Rate this topic

20 posts in this topic

Recommended Posts

Hey all

I am in the midst of writing a book. I am putting a chapter or 2 in the book of celiac experiences from numerous people. If anybody would like to add theirs just email me and let me know. I would like at least 5 more but could use more. Thanks everyone :D

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hey, I think that's really cool, Katie...... ;)

After I get all the kids bathed and into bed tonight, I will try to stay awake to come down to the computer and write out my celiac story for you...... :P

Karen

Share this post


Link to post
Share on other sites

awesome I look forward to hearing it Karen :D

Also anyone who has any suggestions on things they would like to see in a book...as a reader what would catch your eye?

Thanks B)

Share this post


Link to post
Share on other sites

A Personal Touch On....Celiac has done a great job with their book on celiac disease. They used the format that you are speaking of.

-Jessica :rolleyes:

Share this post


Link to post
Share on other sites

Kaiti I think that a book is a wonderful idea. I have noticed many of your postings. You are a smart and beautiful young woman. Put you beautiful face on the cover, it will get attention. I'm glad you are going to spread the word about this hidden disease that doctors don't want to acknowledge because they can't get kickbacks from the drug companies. My doc threw a major fit :angry: and had a meltdown :angry: when I told him I was feeling better from enzymes. He called it <_< hocus pocus... I only stopped because of the cost factor.

I would share my story with you. Feel free to email me regarding what you are exactly looking for.

I noticed you have just been diagnosed with Graves Disease this March. I'm so sorry! I also have a serious thyroid problem too. Are you on thyroid medication? I'm having a hard time with it finding a balance in my system...

I wish you the very best with your quest and if I can help in anyway (I can design you a web site) or etc., please feel free to contact me. :)

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you everyone who has offered to help :D If you still want yours in it let me know I have a little bit of room for the stories left.

Share this post


Link to post
Share on other sites

Hey Kaiti,

I am halfway through writing out my celiac journey. Do you still want me to send it? It would probably be tomorrow.......

Let me know!

Karen

Share this post


Link to post
Share on other sites


Ads by Google:


Karen

Yes most definitely. I am going to be trying to collect stories for another week or two. Thanks :D

Share this post


Link to post
Share on other sites
Guest nini

I've been writing articles for my local health food co op for over a year now, and a lot of people keep telling me that I should write a book. I'd love to, but I don't really have that much time to devote to that! Have you thought about having a co-writer or something to that effect??? Just a thought! :D:D:D

Anyway, Since I've already got these articles written (and there is nothing saying I can't use them in a book) would you be interested in seeing what I've got so far? I don't know if you'd want to use it in your endeavor, or if you have any suggestions for a direction that I might go with it. Feel free to pm me or e-mail me at nisla@comcast.net

Share this post


Link to post
Share on other sites
Guest ajlauer
Also anyone who has any suggestions on things they would like to see in a book...

Any of the common questions that get asked. An appendix with safe/forbidden foods.... what tests to tell the doctor about.... maybe a few recipes for bread, pizza dough, cookies, and the more common "but I can't give that up!!!" foods. Would be good to mention the gluten-friendly food companies, but that could become outdated pretty quickly.

You could also see if any of the gluten-free food companies would give you coupons to put in the book, or with the book.

Share this post


Link to post
Share on other sites


Ads by Google:


Would be good to mention the gluten-friendly food companies, but that could become outdated pretty quickly.

That was one thing I was wondering about...I think I am going to put them in it and say this is correct to my knowledge but companies change their policies frequently and I will put the #'s by the company name as well.

Share this post


Link to post
Share on other sites

You should have a list of some of the symptoms and how to get tested if you think that you might have the disease, and also a FAQ section because people have a lot of questions, and I know that you can't answer all of them in a book, but thebasic questions are the most helpful.

Share this post


Link to post
Share on other sites

Yeah I have sections on symptoms, complications of ignoring the diet, cross contamination, a section for people with friends and loved ones with it, how to get tested& the diagnosis process,treatment-gluten free diet, personal experiences with celiac, and some other sections with manufacturers numbers and so forth. Thanks for the suggestion...helps to know what people want to read. :D

Share this post


Link to post
Share on other sites

Thanks Monica :D

I'll take a look at it...I can't use them unless I am given permission by them though.

Share this post


Link to post
Share on other sites


Ads by Google:


Because the gluten-friendly food companies will probably outdate pretty soon, you could also list the companies on a website and put the website adress in the book. It's easier to update a list on the internet, than in the book all the time. So the list would be more like an add to the book.

Share this post


Link to post
Share on other sites

Hi Kaiti, glad to hear you are writing a book!! Us newbies need all the info we can get our hands on at first. I have been gluten-free for a little over a month now and it is difficult. There needs to be a chapter about how to cope and grieving over foods and restaurants that are missed like Pizza Hut, Olive Garden, etc.... I used to love to eat and as the saying goes "Live to Eat, eat to live". I now have to learn to eat to live. Healthy!! I am still at that stage that I think a lot has been taken from me, until I get used to how all the new breads and everything taste.

Also, a little note that people could copy off to keep in their wallet/purse that really tells what and how important Celiac and the Celaic diet is so that we can give it to restaurant people, friends, relatives, etc. When I go to a restaurant it would be nice to have a little card (the restaurant card I have doesn't explain it) to hand to the waiter so you don't have to explain it to them, they get someone else out, you explain it to them. They could just take it back and all read it then know what to do. Does that make any sense. I tell people about Celiac and they think if I just don't eat bread, pizza, pasta all is well. WRONG!!!

Good Luck!!

Fonda

Share this post


Link to post
Share on other sites

Your welcome :D and I know what you mean about people thinking if you just avoid bread then your ok..they don't realize the extent of what gluten is in...celiac has been getting more notice though so that is at least good.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,139
    • Total Posts
      939,873
  • Member Statistics

    • Total Members
      66,126
    • Most Online
      3,093

    Newest Member
    Sweetmary65
    Joined
  • Popular Now

  • Topics

  • Posts

    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
    • I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band.  I lived!  Seriously, just wash your hands after handling.  Ennis is right.  Do not take a big sniff of the boxes in case there is any residual flour.  It took days for my van to air out and I did lay some old beach towels to protect my interior as normally, gluten is not allowed!  
    • I just found a nicer compilation of her work, much easier to understand. She also makes the connection between Sleep apnea, vit. D and the gut. Maybe you will enjoy it too:  https://www.vitamindwiki.com/Handout+on+Vitamin+D+(Hormone+D)+and+sleep+-+Gominak+2012 She mentions autoimmune diseases in general but not Celiacs. But I think it all connects and makes sense.  You are right, no matter how a post is, someone might read it. I did. 
    • i looooove nuts.com.  i've already ordered all my nuts, etc, for holiday baking from them.  if you order (i think it's 65 bucks) enough, you get free shipping.  the nuts are so pretty, not all busted up and stuff.  they send you a little sample with your order (this time it was goji berries) also, i got pepitas and sweet rice flour.  they have added alot of new products.  i highly recommend them
  • Upcoming Events