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Glutened Symptoms, Need Help!

nikki-chevelle

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nikki-chevelle Newbie
nikki-chevelle
Posted

Hi everyone!

 

6 months ago I went to my Doctor over stomach issues. On a daily basis I would have stomach cramps and diarrhea. I finally had enough and went to have it checked. He had given me a blood test to check for Celiac as well as a barium swallow (??) and basically nothing came up. He then just told me, go gluten free and see if my symptoms subside. About 2 months in, I actually started feeling normal again, no more pains, no more diarrhea I thought I had discovered the issue, so no more gluten! 4 months later I realize im starting to fall back down, im getting "glutened"  by everything. Id get the classic intestinal pain that would leave me in a fetal position on the bed crying, followed by next day diarrhea and feeling "clued out"(brain fog?). I started feeling somewhat frustrated and desperate, I know my doctor doesn't really seem to give a hoot so I feel like coming onto this forum is my best help :). Last week I got so irritated (and hungry) I decided, f*** it im going to have a slice of cold pizza that was in the fridge, expecting to have it hit me like a ton of bricks...... it didn't...BUT, about an hour later I felt massive full body heart palpitations, heartburn, and instantly felt exhausted.. at first I assumed it was random and went to bed. Yesterday, I had a licorice, expecting nothing at this point, I had the SAME symptoms, the heart palpitations, the heartburn, the tiredness that I could have slept at 2:30pm in the afternoon. I guess I was expecting to have the full blown diarrhea to indicate I have celiac or at least an intolerance to gluten. Does anyone have any clue on whats going on here? Any similar stories that could help me push me on the right path!?

 

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GottaSki Mentor
GottaSki
Posted

Diarrhea is NOT an essential symptom of Celiac Disease and doctors belief that it is left me undiagnosed for 43 years.  You have symptoms that improved gluten-free and obvious reactions to gluten.  There is only one option.  Remove ALL gluten...it doesn't hide, but it does take dedication to learn what foods either contain gluten or are prepared where they are in contact with gluten.

 

It is quite common to become more sensitive to cross contamination, etc once gluten is removed.  Your body has an immune response to gluten -- once removed it takes very little for this response to trigger.

 

Have you read the "Newbie 101" thread?

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Welcome to the board Nikki :)

nikki-chevelle Newbie
nikki-chevelle
Posted
  • Author

But how come now, when i do eat gluten, i dont get a super direct hit like i used to, Thats the part thats confusing me.

kareng Grand Master
kareng
Posted

But it sounds like you do get symptoms & a " direct hit"! It doesn't have to be diarrhea. Getting an immediate reaction isn't usually a celiac thing. If you have been gluten-free for a while, you might need a few hours to mount an antibody defense.

But, you tested negative. You might have a sensitivity to gluten. You might not. Maybe it's some other food cause ing your issues? Maybe its a blood sugar thing? Maybe your thyroid? Sorry. There is no easy answer here.

nikki-chevelle Newbie
nikki-chevelle
Posted
  • Author

well, i know before i even went to the doctors, my "tell tale" signs of issues were pizza, sandwhichs, bread with my eggs, i ALWAYS ended up with the "D".

I got tested my thyroid and blood sugars were great, my doctor did also tell me the blood tests for celiacs arent always 100% accurate. Maybe i should stick to gluten free for a little longer and see. But i do know the last few times i did eat gluten, i felt something going on in my head.

Not crazy Rookie
Not crazy
Posted

Try to get a copy of the tests the dr ran for celiac. There are a few and most doctors don't run them all they'll do one or 2 and call it good. You could of been negative on the one he ran but might of shown positive on the one he didn't.

You also said there was pizza in the fridge so that means you have a shared kitchen. Most people become more sensitive to gluten the longer the are off it. You may have become sensitive enough that the cross contamination from the kitchen is giving you symptoms. After I first went (what I thought) gluten free I could eat at restaurants and order off their gluten free menu and felt fine. I also had a share kitchen but did have seperate pans and spatulas for me. After a while it seamed like I was constantly feeling like I was getting glutened. I made my whole house gluten free. I threw out and replaced the toaster, mixers, and anything plastic. Even the dog is on a grain free food. The constantly getting glutened stopped.

If I start eatting to much processed foods I will start to have issues and no energy. Not sure what in the food is causing issues I just know what my limit is and try not to go over it. If I do, it turns into a never ending cycle. No energy to make dinner or breakfast so I end up eating more processed stuff. Which just makes me feel more tired and sick so we end up with more processed junk. I feel the best when I only eat fresh fruits, veggies, and meat.

nikki-chevelle Newbie
nikki-chevelle
Posted
  • Author

Actually your right, he only did 1 test, and called it quits. I actually have the paper right in front of me, and its only the TTG test.

I didnt even know there was several blood tests. :( geez...

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