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

Worse Attack After Starting Diet And Being Exposed?


amiglute

Recommended Posts

amiglute Newbie

First of all i do not know for sure im gluten intolerant or have celiac disease. I had a pain in my upper right rib area that felt like a tennis ball sitting in there. It was more like a constant pressure and wasn't a sever pain. I went to the Dr. and he suggested a gluten free diet and did some blood work that didn't show any other real issues.

I never really had any diarreah or really any other symptoms that i knew of until this right rib cage pressure/pain came along.

So i decideed to go gluten free and i did this for about two weeks. Whether it was mind games or not i found that even after one day i didn't really feel that pressure in my right rib so that makes me think he was on to something.

(let me add i am lactose intolerant if that ever factors into any of this)

But what i find weird is this. I went all this time and never really had any symptoms until this right rib cage pressure and started the gluten free diet. One day coming home from work i was so hungry i stopped at McDonalds and had two hamburgers and fries.Well i started feeling bad and but the symtpoms im getting NOW are not what i had ever had before.

I guess my question is this. Had i not gone gluten i am thinking the two hamburgers wouldnt have had as big a deal on my body. Dopes going gluten free even for a short time and THEN getting glutoned make symptoms worse? I have weakness in my hands when i type, i get some twithcing in mt lower calves, had some bad headaches that i think are like sinus headaches(i do have season allergies so maybe that's it),. Can it be worse trying to go free from gluten and then getting attacked? That doesn't make a lot of sense or maybe it makes a lot of sense i don't know.

I just find it real weird all the sudden i have weak muscles,twitching, maybe even a burning blood sensation, my right pinkie all the way down can go numbish and tingle as well. No diarreah, no real stomach pain, didn't even get that right rib cage pressure back i got something that felt like my body was being poisoned or attacked(of course it was).

So here i sit not knowing whether or not for sure i am anything yet this stuff is happening fast. I go from nothing at all(maybe some slight fatigue and that rib cage pain) to all the sudden i think i have serious nerve problems. My hope is that i am allergic to gluten and i can stay away from it and let my body heal properly. I just found it real weird to go from nothing to muscle fatige that fast and thinking had i NEVER started the gluten diet that may have not happened. maybe it would have but i kind of have afeeling it wuldnt of.

Hard to explain all this sorry for being all over the place.


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

I can tell you that a lot of people report this effect- they try the diet, and then the

first time they have gluten, the symptoms are far worse than ever before. It's

certainly not universal, but is quite common. It's really very good proof that gluten

is no good for you, if it makes you sick this way.

srall Contributor

Oh absolutely! You can research this board and find many stories of people glutened for the first time after being gluten free for even just a few weeks. I had one bowl of soup (not even a piece of bread) and was bed ridden with joint pain, fatigue and a nasty DH rash for 3 weeks. It's very possible.

nvsmom Community Regular

I have only been gluten-free for 4 months, and I was only accidentally glutened in that first month. I didn't find my reaction to be much worse than it had been in the past when I wasnot gluten-free, but it was definitely much more noticeable than it had been. I attribute that to the fact that the inflammation and symptoms were starting from a low level... let's rate it as a 2 on a scale of 1-10 for symptoms. When I was glutened, I had a reaction of a 7; going from a 2 to a 7 was very noticeable. When I was eating gluten all the time my body was in a constant state of inflammation which I would rate at a 5; so when I ate gluten and got a reaction of a 7 it wasn't such a change in symptoms to go from a 5 to a 7....

Does that make sense? LOL

Perhaps when I've been gluten-free longer I'll notice more severity in my reaction to gluten, but for now I would have to say my reactions are not worse than when I was undiagnosed.... But that's just me. :)

GFinDC Veteran

Yep, that does happen. Bunnie is right, if your body reacts badly to gluten you shouldn't eat it. Most people with celiac don't know they have it. Symptoms are often in places besides the gut. Symptoms in other parts of the body are sometimes misdiagnosed as some other condition. Some people are "silent celiacs" and have no obvious symptoms aslo.

SMDBill Apprentice

I had 4 days of pretty rough intestinal pain and cramping after 5 weeks gluten-free and then getting glutened. The following 4-7 days were lighter symptoms followed by the last day of a 2 week recovery where I actually felt good again, as if it hadn't happened. And I didn't have a cheeseburger or anything. Mine was just cross contamination.
Takala Enthusiast

This reaction to eating gluten, after being off of it awhile, does not happen to normal people who are eating a glutenfree diet for awhile for other reasons, such as living in a gluten free home with family members.

So it is unique to the celiac and gluten intolerant. If you had not started the gluten free diet, you would have still developed those neurological symptom reactions, but the onset may have been gradual enough that you didn't feel it all at once - we should call it the boiled frog syndrome, where the frog gets put in a pot of tap water on the stove.... and doesn't notice that the water got really hot, until it is too late.


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



Celiac.com Sponsor (A8-M):



gatita Enthusiast

amiglute, going gluten-free for sure made symptoms of glutening suddenly worse for me. It blows my mind that six months ago I was eating pasta and garlic bread and feeling noooo pain... but this week I did a mini-gluten challenge and had a super severe reaction!!

Who knows why our bodies just realize they don't want this stuff after we go gluten-free... and if any gluten sneaks back in, the body knows how to tell us loud and clear, "Oh hail no!"

OK that's my very scientific explanation of it lol...

Persei V. Enthusiast

I had cramps and a D attack this Monday morning... And the different thing I ate was a bloody "gluten-free" mini pizza crust. Yeah, right...

love2travel Mentor

After my celiac diagnosis 1.5 years ago, I went gluten free. I was accidentally glutened once soon after and not again until a few weeks ago. Both times I had absolutely no reaction! Sometimes a little part of me wonders whether I truly do have celiac...but in my mind I know that I do. Weird. :blink:

1desperateladysaved Proficient

"Does going gluten free even for a short time and THEN getting glutoned make symptoms worse?"

It did me! I think it is too sick on full time gluten to let you know. But when it has a chance to recover even a bit, it will let you know! It is actually a very good thing. It is super motivating!

Diana

mbrookes Community Regular

I have been gluten free for six years, and YES, an accidental exposure to gluten brings a swift and extremely unpleasant reaction. And, 1desperateladysaved, it is a very strong motivator.

I have learned so much from you people on this site. I don't know how I would have ever gone from my original "I will never be able to eat anything" to "It's just routine" without y'all. Thanks a million times.

Archived

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

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,814
    • Most Online (within 30 mins)
      7,748

    JaneD
    Newest Member
    JaneD
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.