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TinkerbellSwt

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TinkerbellSwt Collaborator

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.


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Carriefaith Enthusiast

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

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

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

TinkerbellSwt Collaborator

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

jerseyangel Proficient

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

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.


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RiceGuy Collaborator

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

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

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

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
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

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

Claire Collaborator

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

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

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
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

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
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

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
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
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

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

Welcome Tinkerbell

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

Deb

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    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
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