Coping with it all

[Thatwouldbeme95]

Hey guys , i'm a 20 year old female who has recently found out that i have celiac . No i was not properly diagnosed by a doctor but figured it out myself via google and doctor's diet recommendations. As a heavyset female , I hold hygiene to a very high standard so it was a shocker to me when family members , coworkers , and strangers had recently began complaining of a foul gassy or fecal smell when I was around - yet most times I could never smell anything . Throughout my whole life before this last incident ,  I had only received two other complaints of this smell - once back in ninth grade before finals week in my algebra class by classmates whereas one of the girls who sat in front of me and didn't like me very much for some odd reason told everyone in the class that the smell was coming from me - which I got bullied for by everyone in the class until the end of the semester .  The second - this past july at a class orientation in front of at least 150 people , in which i heard a few jokes and mean comments about the smell from people in the back of the room . So when this last incident happened , after putting all the pieces together - i figured the smell had to be coming from me . Knowing this - it made me not even want to step foot outside my house - let alone bedroom but for a few more weeks like a trooper I continued with my normal schedule while trying to find out what was going on with me .  My stomach was always in knots , bloated , gurgling and making internal gassy noises - yet to my knowledge gas was never released externally / physically and i was always constipated- which research had led me to believe i had IBS - so  thinking constipation was the main issue - I took a day off from work ( later turning into several days) went to the store and bought every appropriate personal body product and laxative i could find and thought would be of help - to no avail . Although I was no longer constipated - nothing seemed to help eliminate the foul odor . There were both good days where i received no complaints at all , but then there were the bad which eventually made me quit my temp job that i had recently received a month ago because I had become so paranoid about the way i smelled that i was under performing  and not meeting my daily quotas - in fear of rude remarks due to moving in a fast manner ( crazy i know ) and smelling even worse ,  and whenever someone around me did utter a complaint due to the smell - I would run to the bathroom to pass a bowel movement (thinking that was the issue ) and then end up leaving work altogether - and miss the following day because of it - which began to make me really depressed and dreadful of just waking up to start my day . Shortly after it had gotten to be too much for me my mom had forced me to go see a doctor - who basically told me that I needed to develop a better diet rich in fiber and no typical unhealthy foods and maybe eat gluten free products . After this she had me take some tests at a lab and conducted an ultrasound - which i never received a callback with results for .  Even though I had a temp job after helping my disabled parents out with bills , groceries and family outings - there was no way i would be able to buy anything gluten-free , i could barely afford regular items - and what i could buy i never had time to really cook because i was either at school , work or trying to get at least a few hours asleep before either - so what did I do to avoid smelling like a sewer everyday ? Didn't eat anything at all , and only drank water , which i knew was very unhealthy but at the time was my only option .  Because of this I had no energy or concentration at all and my job performance really began to suffer as a result - which led to my resignation . School was out for the semester and doesn't start back up until late this month - which gave me time to dig deeper into research .  In doing this I stumbled upon why someone with my symptoms would have to eat a gluten free diet or have a gluten intolerance - and boom that's when i found the answer i had been looking for after all this time - celiacs disease . Since finding this out I have not consumed anything with gluten or wheat . Its only been a week since i've discovered this , and i've been eating a gluten , wheat free , and plant based diet ever since - which i'm sure will benefit my health greatly . As for the smell , i have not gotten any complaints except one because i had mistakenly took a pill with gluten in it the night before - but other than that nothing . And the killer part for me is that I cannot smell anything out of the ordinary so i have to go off of others - which makes me even more paranoid than before because i don't want anyone to ever smell that smell coming from me again , so i avoid certain social situations and being around people for too long - which is starting to cause some issues in my personal / social life . Right now all I can do is pray that this diet helps , and hope for a normal life where this is no longer on my mind 24/7 . Can nybody relate and if so how do you cope ? All comments , questions and suggestions are welcome . Thanks for listening . 

[krosmon]

I, too, found out I had celiac disease by checking with google.  I had horrid tummy pains and nothing I could do alleviated them, so I went to my holistic doctor who told me I am soy intolerant.  As soon as I stopped the soy, the pains went away - for a while.   It is about a year later and the tummy pains were back and I couldn't figure out why - even went to ER as I have A-fib (heart problem), but they determined the pains were not my heart.  But they didn't know what it was.  I even told my regular doctor and endocrinologist, and they just kind of shined me on.  But once I figured out what it was - my son is gluten intolerant and so is my granddaughter - I went back to the holistic doctor who said, yes, I have celiac.   I know that's what I have and sometimes I eat things that still give me tummy pains so I have to go through each ingredient of what I am eating, and have had to eliminate so much that uses xanthan gum, carrageenan, tocopheral (Vitamin E).  But now that I'm aware, I really adhere to the celiac disease diet - also the paleo diet works well for me -  and after three months, am almost pain free and my energy is returning.  Everyone has different symptoms but if you have a way to test yourself by eliminating something for a couple weeks, then adding it back and see how you feel, you find out what you have to eliminate and learn to live with everything else.   It isn't easy but the end results are so worth it.  I thought my heart was giving me fits but it was celiac response as I was still eating lots of bread, etc.  Now, my blood sugar and blood pressure are totally normal and I feel good most of the time.   I am still quite obese, but at 79 years old, I can live with that as long as I feel good.  I wish you good luck.  Kathleen

[canadianjem]

I was thinking ... some things manifest themselves in different ways.

Diabetes can be a foul ( sewage) smell odour on the breath.  Is it possible that it is your breath?

As I do not know you, please do not take my comments as rude.  This is not my intention.

Ask yourself some questions:

Do I bathe daily ?

Do I put on clean underwear and clothes daily?

Do I brush my teeth regularly?

If a gluten free/plant based diet is making you feel better thats great!!  

Don't forget your body NEEDS a certain amount of protein, fat and GOOD carbs to function

 

 

[squirmingitch]

And look at your tongue. Stick it way out in the mirror. Is there a lot of white on it especially way back? Try a tongue scraper. You would be amazed at the difference it can make in your breath. Mine (breath & the white stuff) can get very bad. My hubs would kindly tell me my breath smelled like dog doo. We couldn't figure it out -- often it was immediately after brushing my teeth & tongue. Then I discovered the white farther back on my tongue. You can use a iced tea spoon, turn it upside down so the spoon part is toward your tongue & scrape. Works a treat! 

[BDD]

Did the doctor check you for a sweating disorder or Trimethylaminuria?

[Thatwouldbeme95]

9 hours ago, canadianjem said:

I was thinking ... some things manifest themselves in different ways.

Diabetes can be a foul ( sewage) smell odour on the breath.  Is it possible that it is your breath?

As I do not know you, please do not take my comments as rude.  This is not my intention.

Ask yourself some questions:

Do I bathe daily ?

Do I put on clean underwear and clothes daily?

Do I brush my teeth regularly?

If a gluten free/plant based diet is making you feel better thats great!!  

Don't forget your body NEEDS a certain amount of protein, fat and GOOD carbs to function

 

 

Hey guys thanks for all the comments and support , I really appreciate it . As for proper personal hygiene : yes , I think at times I can actually be a little too hygienic - I shower at least 2x a day , baths on sundays , brush 2x a day ( never had a breath odor issue ) wash my clothes every 3-4 days , shave every week , etc. - no i was not tested for TMAU however years ago I was diagnosed as pre-diabetic and have not been retested ever since , so that may also play a factor in the smell . I'm going to schedule another appointment with a different doctor and get retested for everything previously stated as well as a few others - I'll keep you guys posted on my progress as well as doc visit info . 

[frieze]

since you tested prediabetic, i would bet on that, type II