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

My Little Celiac Disease Info Packet

Emme999

By Emme999
in Publications & Publicity

Recommended Posts

Emme999 Enthusiast
Emme999
Posted

Hello :) I just put together a little 4 page info packet that I'm going to send to relatives. Please email me if you would be willing to look it over. I'd love to have some thoughts on it by people who know the disease intimately ;)

Thanks! :)

- Michelle :wub:

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

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted

I'd love to :D

celiac3270 Collaborator
celiac3270
Posted

DELETED MY E-MAIL ADDRESS

Emme999 Enthusiast
Emme999
Posted
  • Author

DOH! I just noticed that I typed "reviewers" wrong.

I hate it when people can't spell! :rolleyes: Please forgive me!!

Also, please private message me if you don't want to post your email address :)

Thanks!!

- Michelle :wub:

celiac3270 Collaborator
celiac3270
Posted

Yes...I got it in e-mail so I removed my address from an above post--if anyone wants it, just PM, but having it posted makes it an easy target for spammers...good point ;)

Emme999 Enthusiast
Emme999
Posted
  • Author

Thanks celiac3270! You might notice that I had cut & paste a little incorrectly so some of the info is in the wrong spot - but it's all there. (And I've fixed it!) ;)

Thanks to everyone who's private messaging me!

:wub:

celiac3270 Collaborator
celiac3270
Posted

Sure :D

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

Celiac.com Sponsor (A8-M):


flagbabyds Collaborator
flagbabyds
Posted

I would like to read it celiacmolly08@mac.com

psawyer Proficient
psawyer
Posted

Thanks for sharing. I have looked at your notes and as far as I know they are entirely correct. The stuff about asymptomatic or "silent" celiac disease is especially important for relatives of a person with celiac disease.

Something I would add would be that celiacs must ALWAYS read the ingredients on any prepared food. Friends and family need to keep the package for reference if they are hosting an event with food. Some things are obviously safe, such as plain vegetables and fruit, but dips, sauces, dressings and so forth need scrutiny.

  • 2 weeks later...
rhondaslusher1 Rookie
rhondaslusher1
Posted

I would also like a copy.

rhondaslusher1@yahoo.com

Thank you!

Emme999 Enthusiast
Emme999
Posted
  • Author

Anyone is welcome to a copy. Please email me if you'd like one.

Another thing that I think will be enormously helpful is a letter that my doctor wrote that I'm including with the info. It says:

To the family Members of Michelle Larsen:

Michelle was recently diagnosed with Celiac Disease, a genetic disorder with a number of long term complications if not detected and treated early. I strongly advise Michelle's first and second degree relatives to undergo screening for Celiac Disease. This screening typically involves a blood test called tissue transglutaminase IgA, or t-TG, and can be performed by any primary care provider.

Thank you for your time and attention to this matter.

Sincerely,

Suzanne Martin, RN, FNP-C

In fact, my dad's doctor (who is an absolute moron and told me that my dad didn't need to be tested because "Celiac isn't hereditary") actually ordered this test after my mom handing him this letter. Yay!! And because he had this letter, he actually ordered the right test! I'm sure he wouldn't have done so otherwise because he is a total LOSER! :angry:

But, now we are awaiting the results and hopefully my dad's life will change for the better :) Wahoo!!

Anyway - email me if you want a copy of my info packet. Right now it's at 7 pages but I think I'll only be sending the first four. I don't want to overwhelm them! Or -worse- have them say, "Oh, this is too much.. I'll look at it later." (Then never look at it!)

You guys rule!!!!! I am so glad I'm in this forum :)

- Michelle :wub:

Archived

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

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

  • Member Statistics

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748
    globello
    Newest Member
    globello
    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

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.