Frustrated, Not Sure What To Do From Here!

[Trisarahtops]

Hi everyone, I'm new here. I guess I'm here as sort of a last resort for me.

 

I'm 19 years old and have had digestive issues my entire life. From a really young age, I had frequent stomach aches, chronic constipation, always had a low body weight, headaches, and various other symptoms. At age 16 I was diagnosed with IBS but I didn't really agree with that diagnosis. I went on to seek further help at a gastro doctor who did a colonoscopy and an upper GI scope. He said my biopsy results were not positive for celiac, but he still believed that that diagnosis fit for me. So I started a 100% gluten free diet. It worked wonders for me at first!

 

But now, just about a year and a half later, I am feeling awful. I am SO careful as far as what I eat (no cross contamination, I make all my own food, etc.) but I am sick more than I am healthy. I have migranes, nausea, stomach cramps/aches, and overall feel like garbage. I scheduled an appt with my gastro doctor but I'm just so discouraged and not really sure what to do from here. I guess I'm here to ask if anyone's experienced anything like this and what you think I should do. I'm just so frustrated; no one should have to live this way.

[notme]

it's good you're going back to see your doctor to make sure something else isn't going on.  that being said, have you switched shampoos, etc, personal care products?  using a different pet food?  maybe somebody changed ingredients and something that was safe for you is not anymore.  we are constantly chanting "check the label, check the label...."  lolz

 

i have that sort of reaction to soy - headache, gut distress, fatigue, etc.. - completely independent of a gluten reaction, as it doesn't last as long as a gluten reaction.  <just for example)  maybe try keeping a food journal and note how you are feeling vs what you have had to eat.  that was how i figured out the soy.  i can have a little, but if i load up on it, *pow*  (and also *ow*)  

 

(just something funny i found out from food journal:  eggplants knock me out, for some reason, i eat it and i have to go to sleep.  wierddd.....)

 

i hope you get it figured out and it's not something serious - good luck

[beth01]

I know you probably don't want to hear this, but it sounds like you are getting glutened from some where.  You have to listen to your body.  I know that I used to get terrible migraines my whole life and they magically disappeared after going gluten free.  When I even get a headache now it's a tip off that I have been glutened.

 

Do you share your living space with others?  Is your house completely gluten free?  What have you changed recently,  any health and beauty products, new foods, pets?  Check all your labels, some companies change their recipes or where they process their food so it might be on shared lines.  I know it stinks trying to find out just where the gluten is coming from but if you can't track it down, you aren't going to feel better.  Maybe talking through the last few weeks will help pinpoint just what has changed.  Keep a diary of EVERYTHING you put in your mouth, what you do during the day and when your symptoms begin. It will help you pinpoint just what is making you sick, you find a pattern.  Also, go back to the basics, foods you know don't make you ill.  Then start slowly adding things back in, one new ingredient every three days.

 

I understand your frustration, we all do.  I hope you figure it out!

[beth01]

LOL notme.  I was typing this as you were posting.  Get off my brain wave!!!

[notme]

LOL notme.  I was typing this as you were posting.  Get off my brain wave!!!

and we basically said the same thing - hahaha!    i am a huge food journal pusher - if something is giving me trouble or if i feel like gluten is sneaking in somewhere, i do the journal thing.  the first time i did it, i was amazed at what i didn't remember eating unless i wrote it down.  lolz, refer to the memory loss thread 

[beth01]

What were we talking about? Oh that's right, it was squirrels.  LOL

[mbr22m]

I agree with the others. Check all your beauty products. Both my chapstick, lipstick, shampoo and conditioner had gluten in them. Even meds you get from pharmacy. I recently got letter from mine that they can't guarantee my meds are gluten-free since ingredients are sourced from all different suppliers.

[dilettantesteph]

What do you eat?  Some have resolved symptoms by eliminating processed foods: Open Original Shared Link

[NatureChick]

Because you say that you already prepare all of your own foods from scratch, I'd recommend doing a food/symptom diary in combination with a rotation diet. And in this case, I'd probably keep note of what you use to prepare food as well just in case something in your kitchen became contaminated without you realizing it. 

When choosing foods to eat on your rotation diet (four-day cycles), I'd become familiar with some of the other common food intolerances (lactose, fructose, night shades, alliums, etc.) and the FODMAP diet. That way, you can make sure that you are only incorporating one suspect food at a time as you're doing your four-day cycles. I do know that cramping can be caused by both lactose and fructose intolerances though I'm less familiar with which ones cause nausea. There have been some studies that have found that some people with non-celiac gluten sensitivity are actually intolerant to fructans, which wheat and alliums are both high in.

 

I totally agree that IBS in itself is not a diagnosis so good to hear that you're not settling for that answer ... which basically says nothing more than the doctor doesn't know what is going on.

Edit: You may also want to get tested for H. pylori if you haven't already because it can cause nausea too.

[dilettantesteph]

Because you say that you already prepare all of your own foods from scratch

 

I saw "I make all my own food", but not "from scratch".  That could be significant.