Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Bugsly

Symptoms Worse After Going Gluten Free

Recommended Posts

Hi everyone.

I am new here and tried to search the threads but did not find an answer to my question. I apologize if this is a bit redundent.

What I am curious about is recently I went gluten and corn free (I am intollerant to any type of corn and was scope diagnosed with celiac)...well I accidently got "glutened" at a family dinner. Now, before when I was eating gluten the symptoms were not NEAR as bad as they were after being off gluten. Does that make sense? Does anyone have any thoughts?

Thank you in advance!!!!

Jill

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Many many people report the same thing. For some, it's a lifelong thing, for others it goes away after some time gluten-free.

And welcome to the forum.:)


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

Share this post


Link to post
Share on other sites

I have been free for 3 1/2 years and got glutened last Tuesday. It is the worst of my complete experience... diarreah, nausea, severe headache. Finally this afternoon I feel a little better, but I am so bloated I can barely wear my clothes. Is this normal? I have been glutened before, but never anything like this.

Share this post


Link to post
Share on other sites

It's so wierd that symptoms are worse after going gluten free....

Thanks for the welcome into the forum :) I am the only celiac in my family and it would be nice to have other people understand and share experiences.

Share this post


Link to post
Share on other sites

im sure its safe to go ahead and say that MOST of us have experienced this... in layperson terms- i THINK it's because the body has gotten healthy again and now the immune system is more vigilant and quick to identify the poison.

but when you think about it- it kind of happens with other things too- alcohol, ciggarettes... after abstaining for so long- once you have some- the body is like WHOAH .. WTH


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

Oh yeah - my whole family is the same way. There are four confirmed celiacs in my family, and we've all had reactions grow worse after going gluten free, sometimes significantly so. My daughter didn't even HAVE noticeable symptoms - just chronic fatigue type of things. Now, 1 year gluten-free, if she gets gluten, she has extremely painful stomach aches, her arms and legs get shaky and weak, and she has other issues as well.

It's really a bit crazy, isn't it? :blink:

Oh, one other thing to keep an eye on, just in case? A couple of the celiacs in my family also have grown either more sensitive to gluten as time goes on, or the reactions are occurring now to gluten levels that didn't used to cause them. My daughter reacts now to things that she could have just fine a few months back, for example. I have heard of other celiacs having this happen, as well.

The one bright spot, I figure, is that it's very motivating to stay gluten free, yeah? ;)


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

Share this post


Link to post
Share on other sites

Welcome to the board, and congrats in getting a firm diagnosis of celiac disease - not that it's a great diagnosis, but now you know what's wrong with you at least ;)

Yup, this happened to me as well. Before going gluten-free my symptoms were pretty random - I could eat a pizza and feel fine afterward. Now that I'm gluten-free, eating even a spoonful of something containing gluten will start a bad reaction within 30 minutes, and symptoms can last a few hours (GI-wise) to days later (Neurologically/psychologically).

I also react to much, much smaller amounts of gluten - don't be surprised that as you become more experienced with avoiding gluten, that you start reacting to food that previously you could handle fine (that contain traces of gluten/made in a factory that processes wheat etc).

You may be lucky and find that your reaction will get a bit less extreme once your body is healed, and you may not be as sensitive to trace amounts, but you still need to be vigilant.


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

Share this post


Link to post
Share on other sites

Wow, thank you so much everyone. I am excited to be here and to learn more.

I actually was diagnosed with celiac when I was 2 years old. I missed 4 years of school when my body got so run down. I was getting daily IV's to suplement vitamins and nutrition. Then when I was about 16, my symptoms started disapearing and my Dr. at teh time told me my celiac was in remission. So basically long story short, I went off of the diet and NOW I am paying for it. I lost half my hair, have not had a period in over 2 1/2 years, among other things. Only recently has my cramping, the big D, bloating, and severe pain returened. Well, after going gluten free I am obviously doing MUCH MUCH better. I just thought it was curious that my reactions after accidently getting glutened appeared more quickly and with more power.

Anyway, thanks for the info and support. I am looking forward to getting to know everyone here better and learning from all of your experiences :)

Jill

Share this post


Link to post
Share on other sites

Welcome Jill! This is a GREAT resource for gluten sensitive folks like us. I am the only

Celiac (so far) in my family and it is nice to have a place to come to come vent and celebrate.

One thing I have learned in my short 6 months with Celiacs is that everybody's body reacts differently, symptoms range, and healing times vary. AND, doctors don't know a whole lot about it because of these facts and serious research is so new. They are learning more every day and things will change over time as they learn more. It is good to keep reading and stay informed, even after years living with it. You will never know it all.

Take care!

Wendi


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

Share this post


Link to post
Share on other sites

That doctor should lose his license!!! Celiac does NOT go into remission. ARGh that makes me angry.

Anyway, yes the reactions get way worse. I used to be random too. Sometimes i would eat pizza and feel fine and others get sick. However, I was ALWAYS just sort of sick, so maybe I was reacting and not realizing it because I had so many symptoms all the time.

Now if I get a small amount of gluten I'm sick and miserable. My body has no tolerance for it.

You need to contact that doctor and tell the idiot moron what he did to you by saying you can eat gluten!!! I'm not for lawsuits, but this is so blatantly bad I'd consult an attorney. Seriously, and usually I'm so against that sort of thing, but he damaged you. What he did was just so wrong.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

Share this post


Link to post
Share on other sites