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

Daughter Os A Celiac

KariBeri84

Recommended Posts

KariBeri84 Newbie
KariBeri84
Posted

Hello everyone! I am new to this site. My dad was diagnosed about 6-8 years ago and I've never taken the time to learn about this disease. Since I have moved back to the town he lives in I have been learning more and more, but not enough to satisfy my heart and soul. I can remember when I was little and I knew everything about him. Now, as an adult, I feel like I know nothing about him because I don't know anything about Celiac and Celiac is a part of him...

I feel guilty everytime I try to cook dinner for the family because I always have to ask what he can and can't have. When I go to the store to shop for groceries his phone is constantly ringing with questions about the ingrediants in this type of noodle and in these types of bread. Honestly... I feel like a bad daughter because I don't know... and I should. Some times I just don't know how to deal with this so I just avoid him until I'm ok again. What do I do? Do any of you know of any good books on Celiac? Maybe even some more web sites that might help me to learn more?

~Kari

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

Celiac.com Sponsor (A8-M):


angel-jd1 Community Regular
angel-jd1
Posted

Kari-

That is great that you are wanting to learn more to help your Dad. I am sure he is very grateful for your understanding and willingness to learn.

You have come to the right place. Reading the posts on this site is the perfect place to learn more about celiac. You can also post if you have questions on ingredients or products. We are all here to help.

As you may or may not know, Celiac is genetic. Have you been tested yet? It is a good idea for all first degree relatives to be tested for celiac.

Keep posting and reading. Soon you will be an "old pro" at Celiac info.

-Jessica :rolleyes:

flapjack Newbie
flapjack
Posted

Hello everyone! I am new to this site. My dad was diagnosed about 6-8 years ago and I've never taken the time to learn about this disease. Since I have moved back to the town he lives in I have been learning more and more, but not enough to satisfy my heart and soul. I can remember when I was little and I knew everything about him. Now, as an adult, I feel like I know nothing about him because I don't know anything about Celiac and Celiac is a part of him...

I feel guilty everytime I try to cook dinner for the family because I always have to ask what he can and can't have. When I go to the store to shop for groceries his phone is constantly ringing with questions about the ingrediants in this type of noodle and in these types of bread. Honestly... I feel like a bad daughter because I don't know... and I should. Some times I just don't know how to deal with this so I just avoid him until I'm ok again. What do I do? Do any of you know of any good books on Celiac? Maybe even some more web sites that might help me to learn more?

~Kari

Hey there, it's good to see you doing a little research. I don't have celiac myself, but my 8yr old daughter was diagnosed at age 4 (scoped). I have learned the general rules of thumb that keep her feeling healthy and the pitfalls that can ruin the best intentioned research & preparation. This is my first post in here so I'm just going to lay out a rough outline of my ideas for you & hope for the best.

At first the hardest part was finding palatable replacements. We found several brands that were easy to make & tasted MUCH better than many we'd tried before, like Tinkyada pasta with the rice-bran in it actually has good texture (I'm sure there are others but we didn't find any), "Really Great Foods" pancake mix which I found also works in a waffle maker, "The Gluten-Free Pantry" sandwich bread mix (to which we dedicate a bread maker that we use about twice a week), etc. Our son has egg & peanut allergies as well btw, so it's a little more difficult than average for us to get alternative recipes to work properly.

Right away, we learned that it doesn't matter what you're cooking if you cross-contaminate it with wheat because the flower is in your cooking utensils, mixer, embedded into your cutting board, in residue on the cookware, etc... it will get in the gluten-free products thereby "spoiling them". We had to make sure our kitchen never gets gluten products in it now, it's too hard... Things like spreading butter on wheat bread then dipping the knife back in to get a little more will contaminate the entire butter dish making it unusable. Any mixer or breadmaker or pan you use to bake with would become contaminated... So we basically bought new cookware & started over after wiping down all of our cabinets as best we could.

Buying gluten-free specific items & keeping cross-contamination to a minimum is fairly straight-forward. The tricky part, however, seems to come from the undeclared sources of various food additives. Things like caramel color can be derived from wheat OR corn (have to do some research to find out which), malt powder (someone feel free to correct me if I'm wrong, but Rice Krispies, for example have malt and I've been told it is derived from wheat, so even though wheat isn't declared as an allergen present in the ingredients, this is not a gluten free food), soy sauce is usually wheat derived, etc. The list goes on...

All you can do, is your best though. In our case, we simply pack her lunches, bake her own treats for parties, make her friends wash their hands when they come over before using her computer or playing her games and everything seems to be fine. You can't be perfect so it's a fine line you have to walk.. striving for as gluten-free as possible without becoming obsessed & letting it take over. With your dad, are you simply wanting to be able to go out to eat with him? bring him things? invite him over for meals? All that can be perfectly easy to do if you perfect the cross-contamination stumbling block and YES everyone messes that up from time to time. Just learn, adapt & overcome. Eventually you'll have a handle on it & know where you stand. Good luck :)

KariBeri84 Newbie
KariBeri84
Posted
  • Author

Thank you Jessica and Flapjack. Just the little you have told me has helped some. Jessica, I have been tested. I was tested almost 7 years ago, my dad says I'm about 2 years over due for another round of testing. He says All of us kids are supposed to be tested every 5 years.

kbtoyssni Contributor
kbtoyssni
Posted

Welcome! I'm sure your dad will really appreciate you learning about the disease. And don't worry about calling him all the time asking about ingredients. He's the expert since he lives it everyday. I love when my friends call and ask about ingredients because I know it means they care enough to get it right.

My favorite book about celiac disease is Dangerous Grains. My favorite cookbook is The Gluten Free Gourmet.

Maybe you can go over to you dad's place and cook with him. He'll have all the gluten-free ingredients and will be able to teach you as you go along. Don't worry that you don't know everything about the disease. It takes a long time to learn it all. I've been gluten-free for 16 months and I'm still learning things that do and do not contain gluten!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      High DGP-A with normal IGA

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

      Finding gluten free ingredients

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

      High DGP-A with normal IGA

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

      High DGP-A with normal IGA

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

      High DGP-A with normal IGA

      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.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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)

  • Upcoming Events

  • Posts

    • 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

      By captaincrab55 · Posted

      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.
×
×
  • 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.