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

Newbie May Have Ciliac Disease

CaveBear

Recommended Posts

CaveBear Newbie
CaveBear
Posted

Hello everyone.

I'm really very new to this. I went into the hospital tuesday with severe iron deficiency

anemia (hemogloban was 6.4). Got a total of 4 units of packed red blood cells to get my

counts higher, but also while I was there they gave me both an upper and lower endoscopy.

They found no sources of bleeding, which is what they were looking for, but found signs

of Celiac in my small intestine and took a biopsy. I won't know the results of the biopsy

probably for around a week. In the mean time they put me on a gluten free diet.

I went out and found a couple heath food stores that stocked gluten free products,

so I got some rice bread, pizza and pasta.

Anyways, like I said I am really new to this. If anyone can give me some helpful suggestions

on getting started and maybe what to watch for I would really appreciate it.

Thanks,

Randy

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Welcome Randy:

This is a great place to learn about Celiac.

First, don't rush off any by gluten free foods yet. (I still have some I bought when I was first dx'd almost two years ago). Try to stick to naturally gluten free foods such as, meats, seafood, rice, potatos, fresh veggies, eggs and fruit.

The diet is not difficult and with a little adjustment, you can eat as well as before and healthier.

Some people are sensitive to dairy until they heal and then gradually re-introduce into their diet.

There is a ton of information on this site. Read and Ask.

HawkFire Explorer
HawkFire
Posted

Watch for gluten in your shampoo, conditioner, chapstick, and other personal care products. Watch for gluten in things such as your BBQ briquettes! Yes! They typically contain wheat. Can you believe it? Watch for the one brand (I forget) of Hotdogs that contain wheat. Watch for torn or fragmented teflon pans- the gluten can remain within the tears. Watch for plastic spatulas. Do not use the same utensil for preparing gluten free/gluten full food items. That small amount of cross-contamination will negate the best of your efforts to remain gluten free.

You will find that many gluten free products are not very good. Some companies capitalize on a desparate consumer group. I recommend kinnkinnick.com. I use them. They are reputable and their food products are NOT a waste of your hard-earned money!

I know some people say stick with naturally gluten free products, but I have three children and we did need to find replacements when we went gluten free. We have bread, we have crackers, we have spaghetti - Tinkyada brand is the only one I buy- we make garlic bread on Kinnikinnick english muffins to go with our italian meals. We are not deprived in any way. Texture and flavor are important in food.

  • 4 weeks later...
CaveBear Newbie
CaveBear
Posted
  • Author

Well, I got my tests back, both blood tests and the endoscopy biopsy and it was determined that

I definitely do not have Celiac's disease. I want to thank those that responded to my

post, and want to wish you all the best of luck living gluten free. After living for around a

month gluten free, I have a deep respect for all of you that have to deal with it

perhaps for the rest of your lives. I truly hope they will someday find a cure,

or at least a drug that will allow you to be able to eat without having to worry

about what is in the ingredients of everything you eat.

All my best,

Randy

Lisa Mentor
Lisa
Posted
Well, I got my tests back, both blood tests and the endoscopy biopsy and it was determined that

I definitely do not have Celiac's disease. I want to thank those that responded to my

post, and want to wish you all the best of luck living gluten free. After living for around a

month gluten free, I have a deep respect for all of you that have to deal with it

perhaps for the rest of your lives. I truly hope they will someday find a cure,

or at least a drug that will allow you to be able to eat without having to worry

about what is in the ingredients of everything you eat.

All my best,

Randy

Randy, you know that this a place for support, where ever life finds you. Whether Celiac or not, it's always a good place to come.

Nantzie Collaborator
Nantzie
Posted

Also, keep the gluten-free diet in the back of your mind as something to try. There are so many people here (including me) who had negative test results, but had life-changing results just by trying the diet.

I hope you feel better soon.

:D

Nancy

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. Flash1970
      - Flash1970 commented on Scott Adams's article in Additional Concerns
      1

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

      He should have gotten millions. How much is your life worth?
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      @cristiana, I react the same way. Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies. We have opioid receptors throughout our...
    3. knitty kitty
      0

      About Celiac Remission

    4. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748
    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • 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.