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Talking About Coeliac

Kaycee

By Kaycee
in Coping with Celiac Disease

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Kaycee Collaborator
Kaycee
Posted

This feels in some way like a religion. There are those of us who know all about coeliac, and then there are the others who do not know much or anything. I feel at times I am trying to preach a new religion, when all I want people to do is understand where I am at, and how gluten impacts on my life.

I will be staying with my parents for a couple of weeks soon, and since they are elderly, and coeliac has only hit me out of the blue and with no inkling of where it came from. There must be more in my family with it, as it is quite a large family, but so far I am the only one with it. Only about three of the immediate family have been tested and that was negative.

What I am asking is how do you explain the disease to other people, and how much do I need to say. My parents have no access to the internet, well even if they did, they would not, so I guess it is up to me to explain it for them. Any help out there?

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Guest Evelyn&Ric
Guest Evelyn&Ric
Posted

I just read a new book Celiac Disease a hidden epidemic by Peter Green, M.D. and found it very informative. The book covers the digestive tract, diagnosis, related conditions, medical management, and “coping with” topics. You may want to take the book with you and leave it lying around which may encourage family members to ask questions.

If you parents have a library near by, they can get free internet access with a library card. The staff at most libraries also helps people with the computers and internet. Best way to get them started is to get an email address so they can write to family and friends and it snow balls from there.

Hope this helps.

Evelyn

Guest cassidy
Guest cassidy
Posted

I have been on several business group trips where I'm have to eat with strangers. If they ask why I have different food I say I have a food allergy (I realize it isn't). Some people just leave it at that and don't ask anymore.

If they start asking more questions, then I answer them. If they ask what I'm allergic to I say gluten. If they ask more I say it is a genetic autoimmune disease and tell them what contains gluten.

This has worked with all sorts of people. If they are interested, I'll tell them all they want to know about it, but if they are just curious as to why I have different food, then I will leave it at that. I don't think celiac is that interesting to non-celiacs so I try to keep that in mind. However, people that care about you, may want to know more.

If they end up wanting to know a lot you could always go to the local library and get online and print some stuff off. This site has a lot of a good explanation.

cgilsing Enthusiast
cgilsing
Posted

I do the same thing and usually just tell people I have a food allergy to start out with. Most people understand that food allergies are serious and a lot of times that is the end of the conversation. If they want to know more than sometimes I explain that celiac disease isn't actually an allergy, but rather an auto-immune disorder that acts like an allergy. When my body has gluten, it falsely reacts as though the gluten is something harmful. Not everyone with celiac disease has exactly the same symptoms. For me the most obvious symptoms are flu like, but it also affects my skin, sleep paterns, and over time depression and hair loss. That's usually as much as people want to know....I feel like it's not too detailed, but if they have more questions I answer them. After that I just play it by ear.. :D

lorka150 Collaborator
lorka150
Posted

hi Kaycee,

why don't you ask your parents to take a book (perhaps Gluten Free For Dummies... it is very basic and easy to follow and was the ONLY book that helped my dad understand) and glance it over before you head there? or can you make them a pseudo info pack and send it to them?

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @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
      Finding gluten free ingredients

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      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
      High DGP-A with normal IGA

      By rei.b · Posted

      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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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
      High DGP-A with normal IGA

      By rei.b · Posted

      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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