Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free
0

35 posts in this topic

This seems to have gone off topic in a big way. Please limit your replies to those that are responsive to the original poster and her original topic, and are constructive.

0

Share this post


Link to post
Share on other sites


Ads by Google:

But anyhow -back to your original post - your reaction to gluten will likely become more and more severe. Its the way of the world - mine are far worse now than when I was eating it every day. Doh!

1

Share this post


Link to post
Share on other sites

Nope...I'm just careful. Very careful. :) I was just trying to make the point that this is not something to be taken lightly, or to get after people for taking it too seriously.

And to turn this back to the OP: Honestly I had to intentionally gluten myself one time to really get how serious this is. I was on vacation and I thought...gluten free is just too hard so I let loose a little bit. Then ended up in bed for 3 weeks. I've learned a lot since then, and I really have felt this forum to be more helpful than anything else. I've referred a lot of friends here too.

I believe you're a great mom. Hopefully you won't be turned off from the site. I have been here a long time and I'm telling you the most helpful and caring people responded to your post. I think when babies or kids are involved we just get worried...it's a pretty serious situation.

(

Thanks for coming back to share your experiences. I know you have worked hard to make things safe for you and your daughter.

( maybe I am a tad paranoid about the use of the word "paranoid" on the forum sometimes :lol: )

All the best,

IH

0

Share this post


Link to post
Share on other sites

no one can judge anyone, i am like u i dont believe the doctors untill i see it for my own eyes, i am sure now u r convinced that you really have celiac, when my son was diagnosed i put him on a strict diet for about 2 months he changed dramatically over that period, but i was still not convinced i thought to my self maybe it is a coincidence so it was birthday and everyone was eating cake, if i would have known that they were going to do me a beirthday party i would have got him his special cake but i didnt know, so everyone was eating cake and he was nagging(he was 2.5 then) so i said to my self what is the worst thing that can happen so i gave him a piece of cake, about one hour later he started crying adn throwing up, ii called the doctor he said that becasue his digestive system was healed and suddenly he ate somethign that triggered it, but before it was already damaged so no more damage was being done that is why every once in a while he would throw up not every time he ate gluten

for those who had bad criticism for what you did i tell them that i would rather get my son exposed to gluten and see the reaction with my own eyes than him be diagnosed by the doctor with celiac and i am not convinced, at least now i make 100000% sure that my son's environment is gluten free

and i am sure that now after u saw your reactions you are going to do the same thing... good luck with your pregnancy

0

Share this post


Link to post
Share on other sites




It's difficult to remain gluten free as we all know and I don't think it is unusual to experiment with gluten to see h ow gluten does effect our bodies. We did.

I am the mom of a teen who had positive DGP IGA and IGG but neg biopsy and genes. Initially I was told celiac and immediately had her gluten free. However, she was still sick and we found a long standing severe sinus infection where her sinus could not drain. She had surgery where they rebuilt sinus and drained it. Long story short she came home from surgery crying in joy as to how good she felt, not too long after that met with GI who said it wasn't celiac. So we slowly added gluten back into diet for a myriad of reasons and all was well for months. About six months later she started getting chronically sick again and has since gone back gluten free but is still ill while we search for a resolution to her current health problems.

And by the way, before she went gluten free a year ago I was noticing that eating pizza was making her sick but I never put two and two together. No other food would create the same feeling of illness. I found it odd and still do.

I wish you the best of luck!

0

Share this post


Link to post
Share on other sites

I agree that is difficult at the begining but after some time you get used to it. Every time you reintroduce gluten to your diet you will get worst reaction than the time before. This is because your body cleaned up itself from toxicity and it started to heal itself. But still not everyone has the same reaction. I am an extreme case and i know not everyone is. Still if you are celiac we are having a same kind of war going on in our bodies and you need to avoid gluten to make it stop.

0

Share this post


Link to post
Share on other sites

I have read all of the posts, including JulieAC initial post, and I am thankful for ALL of the replies, even the seemingly harsh ones.

 

I typed into Google, "why do I get sick from gluten when I didn't before" and this popped up. You see, I have been gluten free since September 2012 mainly because my 'Angels, God/Love, Spirit" told me to 'STOP EATING WHEAT' when I truly thought I had stomach cancer.

 

I'd been in constant pain for nearly 2 years and it culminated in September when I looked about 8 months pregnant (which by the way is IMPOSSIBLE since I had a hysterectomy from cervical cancer at age 21). I was certain I had intestinal cancer and had been to the doctor and received an order to have a plethora of tests. That was on a Friday, on Saturday morning in meditation I heard CLEARLY, "stop eating wheat" and I KNEW I needed to be gluten free. That was the first time I found Celiac.org as I had NO IDEA what being gluten free would entail. I also had NO idea how much gluten showed up in EVERYTHING I had been eating. I mean, barley (in my Teeccino), wheat (obviously in EVERYTHING), malt (do you KNOW how upset I feel that I can NEVER again have a malted milkshake??) and rye... Seriously, is there anywhere that Doesn't have gluten?

 

So I came here to find out what to do. I was grateful to find recipes, and information about a gluten free lifestyle. Then the test came back NEGATIVE for Celiac. However since being gluten free I was already feeling 1000% better and KNEW to listen to Spirit over doctors anyday, so I maintained a strict gluten free diet.

 

Then, Saturday night, I was at a work dinner banquet (you know dressing up and all) and I took a BIG FORK FULL of what I THOUGHT was Rice. Turned out to be Israeli Couscous (which is FULL of gluten). Now, I KNEW immediately that this was not rice when I put it in my mouth, and being a high profile person in the organization I didn't want to spit out the food in my napkin, so I reluctantly ate it. I kept thinking 'well, at least I don't have Celiac, and I am just sensitive to gluten so it ought not be a big deal right?' HA! WRONG!!

 

Within about 20 minutes I started feeling pains in my stomach, then feeling nauseous, and the longer I sat there the worse the pains got. I finally had to leave the banquet early and go home. I felt ill all night, and the next morning (which by the way I had to be at WORK by 6am) I was bloated, experiencing diarreaha, and feeling still nauseated. I worked until about 3pm and when I got home had the WORST pains and diarrhea that I remember having since I had food poisioning over 4 years ago (which actually I DID have food poisioning, gluten is now poison to my body). I started feeling better last night and then today have been exhausted and not even able to get out of bed.

 

So I wondered, am I the ONLY one who has had this experience? When I Googled the question and found the forum I felt relieved. My sister kept trying to say 'it's all in your head, you can't be that sick from just a little gluten and you're blowing it way out of proportion'. I YELLED back, 'You have NO idea what you're talking about, and I hope you NEVER have to experience what I just did'

 

I would also offer that to ANYONE reading these posts. Even though I do not have 'diagnosed Celiac', I cannot eat gluten (don't even get me started on GMO's). The fact that I don't have a medical diagnosis does NOT make my symptoms or body behave any differently. Gluten makes me sick, and I now know I cannot eat it, at all.

 

So what's next? What happens the next time I unknowingly eat pasta, or something with wheat? Well I'll tell you one thing, banquet, wedding or Oscars, I'll be spitting it right out into the napkin!

 

Thank you ALL for your loving support of this community!

0

Share this post


Link to post
Share on other sites

I think your body is actually recovering, so you get a stronger reaction.  Once upon a time, your body was overwhelmed with gluten continuously.  Now, sometimes it is over it, so it becomes easier for your body to send out warnings.  Symptoms are a really good detterent and I am glad for mine.

 

Diana

0

Share this post


Link to post
Share on other sites

Hi GL,

 

Welcome to the forum! :)

 

NCGI is being researched now, but we don't know the full story yet.  How it affects the gut damage wise in the long term is not known.  How it affects the whole body in the long term is not known.  They do think it involves an immune system reaction, but it it the innate immune system instead of the adaptive immune system.  That doesn't mean it isn't a bad thing for people's guts.  We just don't know the details yet.

 

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

NCGI info:

 

Non-celiac wheat sensitivity article
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
http://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,387
    • Total Posts
      917,574
  • Topics

  • Posts

    • New Celiac Doctor - Atlanta/Duluth, GA
      Hello! I have Celiac Disease (confirmed by blood tests and endoscopy done in 2013) and was going to a doctor at Atlanta Gastroenterology Associates until the end of last year (2015) when they started charging me for things that happened in 2013 - two years late. I had since changed insurance and was forced to pay out of pocket for the charges or be sent to collections. All in all, I loved my doctor there, but was very unhappy with the way the billing was managed.  So, I found a new doctor and have seen her once. I like her very much so far, but have recently moved and my home is so far from her office it often takes me 1-2 hours to get there with Atlanta traffic. (Her office is at Emory St. Joseph's hospital.) I should say one of the reasons we moved to Duluth was to get away from Atlanta traffic. I don't want to change practices, but I'm considering it. Does anyone out there live in North Atlanta? Alpharetta, Lawrenceville, Duluth, Suwanee? And have a doctor in the area they would recommend that is NOT associated with Atlanta Gastroenterology Associates? I would rather drive 5 hours to see a doctor than go back to that group, no matter how good the doctors are! Any recommendations are welcome!
    • Sjogren's, Celiac, or both?
      Welcome!  Unfortunately, you would have to go back on gluten to get tested (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy).  Here are the tests: http://www.cureceliacdisease.org/screening/ I am sorry that your doctor is so mis-informed! There are over 300 symptoms attributed to celiac disease and some celiacs are considered "silent" with no symptoms at all!  I personally was anemic and had no tummy issues that I was aware of at the time of my diagnosis.   There are other forum members who have Sjogren's who might have some good advice (@Gemini).   I wish you well!  
    • Sjogren's, Celiac, or both?
      Hi! This is my first post here. I'm wondering if anyone else has had a similar experience. I'm in the diagnostic process for Sjogren's, which my rheumatologist is very sure that I have even though my dryness symptoms are very mild. (I am positive for SSA, the autoantibody associated with Sjogren's.)  The symptoms I initially went to my GP with are: fatigue, hair loss, irregular menstrual cycle (very unusual for me), headaches (migraines, almost daily), elevated temperature, weight loss My GP did not do the blood test for Celiac disease. She opted not to because when she asked me if I had loose stool, I said "No, actually, I've been constipated every day for the last 10 years." She said, "Ok, no Celiac then."  ???????? During the diagnostic process, I also lost a pregnancy.  When I eliminated gluten because of recommendations from the Sjogren's Foundation website, almost all of my symptoms disappeared. I still have the hair loss, but no headaches, fatigue is better, cycle is regular, and I'm back to my normal weight. Even my temperature is closer to my norm. I feel like an entirely new person. I still sometimes have mild dryness symptoms but nothing that would have prompted me to go to the doctor without the other symptoms. Should I make an appointment with my rheumatologist and try to get tested for Celiac disease? Has anyone had a similar experience? And how hard do you think it will be to get tested? (Like most doctors I've worked with, my rheumatologist likes to be the one who makes the suggestions.) Thanks for any input! Kristen
    • frustrated and not feeling well
      Hello, how long did it take to get back up? I quit the pepcid and started iron but the ferritin dropped from 74 in December, to 49 in March and 33 a couple of weeks ago. 
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      Hello, This is my first post. Hoping to find an answer to this question. do I have gluten sensitivity?  I've villous atrophy with negative tTG IgG/IgA results, but high anti glaidin IGA value. Test resus are as follows:  1- 3 specimen were extracted, results were as follows: D2- sections show focal erosions of the surface epithelium. Villi show focal shortening and blunting with reduction in villous/crypt ratio. Lamina propria is congested with patchy edema. Intraepithelial lymphocyte count is increased un number (15-30 lymphocytes/100 epithelial cells). The number of chronic inflammatory cells show moderate increase. Brunner glands are normal, parasitic elements are absent.   2- following this i had IgA/IgG blood tests, results are as follows: Gliadin antibody IgA (11.93) Negative but result is very close to upper limit Gliadin antibody IgG (2.35) Negative Tissue Transglutaminase antibody IgA (0.25) Tissue Transglutaminase antibody IgG (1.11) 3- I had food sensetivity IgG ELISA called Imupro, results show very high levels to gluten and wheat + candida albican too. My symptoms are simply bloating all day long, flautance and gases  4 to 6 hours after drinking milk .                
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,524
    • Most Online
      1,763

    Newest Member
    Edav009
    Joined