• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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

Rate this topic

35 posts in this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
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!

  • Upvote 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

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

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!

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.

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!

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

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

 

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
      108,140
    • Total Posts
      939,876
  • Member Statistics

    • Total Members
      66,129
    • Most Online
      3,093

    Newest Member
    Serah
    Joined
  • Popular Now

  • Topics

  • Posts

    • Positive biopsy and blood work?  It sure sounds like your doctor made the right diagnosis.   Let me tell you my story.  Diagnosed after going for a routine colonoscopy because I am over 50.  GI saw my chart and noted that I was anemic.  I have a genetic anemia and I was iron deficient as well.  I lived like that my entire life.  But my wise GI ordered a celiac blood panel and it was considered mildly positive.  So, he ordered an endoscopy to my colonoscopy.   I had been dairy free since I was young.  Was told that I had an allergy.  I had not any GI issues with gluten.   I was an avid baker.  I had nut issues and also mushroom, garlic/onion, and egg intolerances.  I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.   I was shocked.  My husband had been gluten free for 12 years prior to my diagnosis.  There is no way both of us would have gluten issues.  But...the tests did not lie.  My iron deficiency anemia resolved within months of my going gluten free.  Two months into the diagnosis, I fractured my back doing NOTHING!  I have osteoporosis as a results of having celiac disease.   Grief is completely understandable.  Denial is a part of grieving.  But the proof will be in follow-up blood tests and how you feel.   So, now I can eat nuts (not almonds), eggs (two a day every single)  and dairy.  Yes, ice cream!  I have yet to get back garlic and mushrooms, but I can live with that.   I have Hashimoto’s too.  .  Once you have one autoimmune disorder, you can develop more.  The gluten-free diet may help, not only your celiac disease, but your UC issues as well.   Try the diet.  I think you will be pleasantly surprised!  
    • Hi Sofie! Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.   Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.   But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).    Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!    
    • Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.  I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
  • Upcoming Events