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

Brand New

TinkerbellSwt

By TinkerbellSwt
in Coping with Celiac Disease

Recommended Posts

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Hello out there. I am new to this board and just wanted to say hi and introduce myself. I am 33 years old from NJ and have only been diagnosed with celiacs for about a month. What a month its been. I spent 8 long days in the hospital with no doctor knowing what was wrong with me. By the time they finally admitted me I had no potassium or vitamins left in my system. It was horrible. Now I am trying to cope with the disease and so far I am ok. I am constantly checking sites to get receipes for gluten-free cooking. I appreciate all help and feedback. I am glad I fell upon this site.

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

Welcome to the board! I'm sorry that you had to go through that :( There are lots of great recipes on this board in the recipe section. If you need any recipes or meal ideas, please ask!

killernj13 Enthusiast
killernj13
Posted

Welcome,

I am from NJ also. Here are some places to shop for gluten-free food if they are near you.

Wegmans - By Woodbridger Center

Trader Joes - Westfield

Whole Foods - Short Hills - Milburn

Good luck with everything.

jenvan Collaborator
jenvan
Posted

welcome--we're glad you're here ! any issues your wanting to help with, any products you're looking for?

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author

Thank you so much for the welcome. Now i know where to come to get some answers!!

jerseyangel Proficient
jerseyangel
Posted

Hi TinkerbellSwt--Welcome! I am from NJ, too. South Jersey, actually. Glad to hear that you're finally feeling better. As everyone said, this is a great place to come to ask questions, or just talk to some great people all in the same boat. I was DX in June and the board has been a lifesaver for me.

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome :) I am sure you will find this site so helpful. Would you like some lists to help as guidelines? If you would like you can contact me and I can send them to you.

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

A warm welcome from myself as well. Hope you recover quickly and completely. I'm finding this site to be a valuable source of information and support. I'm certain you will too.

Noelle126 Apprentice
Noelle126
Posted

Welcome! This site has done wonders for me. I use it all of the time and ask questions regularly. Everyone is always willing to help!

Rachel--24 Collaborator
Rachel--24
Posted

Looks like you've already got quite a welcoming. :)

I'm a little late but welcome to the board...sounds like you had a rough time. Hope you get better soon. :)

Becky6 Enthusiast
Becky6
Posted

Welcome! I am new here as well! This board has been so helpful the past few days in getting a gluten-free diet set up for my daughter! I am so glad I found this board!!

Becky

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author
Looks like you've already got quite a welcoming. :)

I'm a little late but welcome to the board...sounds like you had a rough time. Hope you get better soon. :)

Thank you. May I ask what everyone does when they have been "glutened"? I have been and am home suffering right now. I have a 6 1/2 month old son and he just doesnt seem to understand that mommy is sick yet. Is there anything I can do? Or do I just have to wait it out?

Rusla Enthusiast
Rusla
Posted

Welcome to the site. It has been great site for me and I hope you will find it the same for you.

Claire Collaborator
Claire
Posted

Do you feel welcome yet? If not, - welcome.

You are going to love this place. Information, support and genuine sharing goes on here. You definitely found the right place.

Come on in and stay awhile. Claire

jenvan Collaborator
jenvan
Posted

TinkerbellSwt -- unfortunately, there is no real quick fix for getting over being glutened. however, most people here have their own ways of coping--some break out the immodium, gingerale, chicken soup. alot of us try and sleep it off or take time out to rest. what are your symptoms ?

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author

My symptoms are severe stomach distress. Constantly running to the bathroom. I get severe pain in my lower abdomen, like below my belly button. If its really really bad, I start throwing up too. I did not get it too bad this time. It is just hard to deal with the pain. It makes it hard to take care of my son too.

Claire Collaborator
Claire
Posted
TinkerbellSwt -- unfortunately, there is no real quick fix for getting over being glutened. however, most people here have their own ways of coping--some break out the immodium, gingerale, chicken soup. alot of us try and sleep it off or take time out to rest. what are your symptoms ?

Have you every tried charcoal tablets. These absorb. Doctor at Immuno Labs recommended this to me. Claire

jenvan Collaborator
jenvan
Posted

tinkerbell--

that sounds miserable :( you could try an antidiarrheal... i don't take meds myself...just drink sprite--it has always calmed down my system. i know gingerale or ginger root. i'm sure others will have ideas too...

this post might be encouraging to you :)Open Original Shared Link

and this one might give you some ideas to help with abdominal pain: Open Original Shared Link

Carriefaith Enthusiast
Carriefaith
Posted
I get severe pain in my lower abdomen, like below my belly button. If its really really bad, I start throwing up too. I did not get it too bad this time. It is just hard to deal with the pain. It makes it hard to take care of my son too.
I also get severe stomach pain (upper abdominal), so I know what you are going through. Pain killers don't work on me, so I usually just have to wait it out. I find that laying on my back and rubbing the area helps a lot for me. I would guess that ice packs would help too.
luvs2eat Collaborator
luvs2eat
Posted

Welcome from me too! Where in NJ are you ? I'm just across the river near New Hope, PA. This is an awesome site with all the answers you ever needed for questions you never thought you'd have to ask!!

pokerprincess Newbie
pokerprincess
Posted
My symptoms are severe stomach distress. Constantly running to the bathroom. I get severe pain in my lower abdomen, like below my belly button. If its really really bad, I start throwing up too. I did not get it too bad this time. It is just hard to deal with the pain. It makes it hard to take care of my son too.

This sounds insane; but my sister and I have found that

drinking a little potatoe vodka (there is a inexpensive one called

luksusowa or expensive Chopin.) speeds up the process. According to

my sisters Dr. it is kills the infection that has started. She

compared it to how the soldiers used alcohol to kill infection

in wounds. It doesn't take to much. It gets the whole bathroom cycle

over faster.

Good Luck!

K

p.s. I just moved from N.J. I miss it so much

that my friends here in colorado call me Jersey

girl. And guess what my favorite song is!

pokerprincess Newbie
pokerprincess
Posted
Hello out there. I am new to this board and just wanted to say hi and introduce myself. I am 33 years old from NJ and have only been diagnosed with celiacs for about a month. What a month its been. I spent 8 long days in the hospital with no doctor knowing what was wrong with me. By the time they finally admitted me I had no potassium or vitamins left in my system. It was horrible. Now I am trying to cope with the disease and so far I am ok. I am constantly checking sites to get receipes for gluten-free cooking. I appreciate all help and feedback. I am glad I fell upon this site.

You will be come infamous chef! It is now one

of my greatest hobbies and the only way I was

able to convince my brother in-law that I was not

so bad. (he was afraid I didn't have domestic bone

in my body and it would rub off on my sister.)

I wouldn't eat any other way even if I didn't have

celiac. I have found that we are probably ahead of

the rest of the world. slowly and surely I find other

people eating this way just to feel better. My boyfriend

has adopted the diet and kicks himself when he lets

temptation get the best of him.

You will do fine!

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author

Thank you for all the ideas of different things to do when I dont feel well. Today I went to Whole Foods Market. WOW! I had no idea all of this stuff was out there! I got gluten free cookies. (I dont know how they taste yet though) I also purchased a gluten-free apple pie! These I thought were treats that were gone forever for me. Its amazing to me. I agree we are ahead of our time. The more and more people hear about this the more and more will start to live this way. I thank all of you for the warm welcomes I have received and hope to be friendly with all of you!

debmidge Rising Star
debmidge
Posted

Welcome Tinkerbell

Board has been a lifesaver and everyone is a good listener. You'll be very glad you stumbled upon us.

Deb

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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...
    2. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    3. knitty kitty
      - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    4. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
    5. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Guinness, can you drink it?

      This article may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,244
    • Most Online (within 30 mins)
      7,748
    tmperrella
    Newest Member
    tmperrella
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
×
×
  • 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.