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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:

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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

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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:

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    • knitty kitty
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      @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.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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      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.
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      High DGP-A with normal IGA

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      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.
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