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

Writing A Book


KaitiUSA

Recommended Posts

KaitiUSA Enthusiast

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


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

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

KaitiUSA Enthusiast

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)

angel-jd1 Community Regular

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:

ms-sillyak-screwed Enthusiast

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. :)

KaitiUSA Enthusiast

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.

Canadian Karen Community Regular

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


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Karen

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

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

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.

KaitiUSA Enthusiast
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.

flagbabyds Collaborator

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.

KaitiUSA Enthusiast

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

Deby Apprentice

Open Original Shared Link

This is a link to another celiac disease forum. There is a thread called our journeys to celiac disease. or something close to that. I know journey is in the title. You can look there for many postings about celiac disease dx.

KaitiUSA Enthusiast

Thanks Monica :D

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

stef-the-kicking-cuty Enthusiast

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.

Fonda Newbie

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

KaitiUSA Enthusiast

Here are some links to restaurant cards you can print out:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Thanks for your input :D

Fonda Newbie

Thanks Kaiti!!

KaitiUSA Enthusiast

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.