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My Story!

Jessica N.

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Jessica N. Rookie
Jessica N.
Posted

Here is my story...(perhaps a little detailed lol)

I am 25 years old. I have been having stomach issues for as long as I can remember. When I was younger I remember having terrible stomach cramps that would prohibit me from taking part in things or having to leave early from events. For a while we thought I was lactose intolerant, taking the pills seemed to help but I took the test and it said I was not. I continued with the lactose pills for a while after, eventually stopping and did not have any problems with dairy. I had trouble with moving my bowels and it became painful. I did not really know who to talk to it about the issues so I put it off for a while. Eventually I realized that I shouldn't be living with that pain, as well as the bloating and stomach pains were beginning to get worse and some disabling where the only thing to make me feel better was to be laying down. I have been seeing a GI for over a year and they diagnosed with me IBS. I have taken stool softer and mirolax and tried probiotics but nothing helped. I asked about celiac and gluten intolerance because I was grasping at straws sick and tired of having problems that were labeled as IBS, which felt to me like something they said bc they had no answer. I received a blood test and one of the markers for celiac was high, so they sent me for an endoscopy. During the endoscopy they found flatten villi, which I was told was what they were looking for to give me the label of celiac. The doctor handed me a packet on celiacas I was leaving the produced, I was thrilled in a sense that I thought I had an answer. A few days later they called to tell me that the biopsies returned negative. I was devastated to not have an answer. At the follow-up appt the nurse practitioner was rude and I felt pushing me off telling me not to focus on the flatten villi and the bedside manner was not up to par. I decided to get a second option and am seeing a new GI. He re-tested me and said that my level was slightly elevated but because of the biopsy doesn't think celiac. HOWEVER, he did tell me that I could try a gluten-free diet to see how I feel.

I just wanted to share my story and know that I am not alone, bc I feel alone sometimes. My stomach gets so bloated it hurts, my pants are tight, my pains make me feel like I cannot stand upright. I plan to go gluten-free next week, about 3 weeks before my doctor appointment to give myself enough time to potentially see improvement before going back. I plan to document my symptoms this week while eating gluten to have something concrete to compare them to when I go to the doctor.

I was hoping anyone with a similar story could lend me some support or ideas for transitioning to gluten-free!

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Twinklestars Contributor
Twinklestars
Posted

Hi Jessica :) I'm very new to all this as well. The description of your pains sounds all too familiar. I'm still at the blood testing stage, so am not 100% sure, but I thought flattened villi meant celiac??? In any case, I'd definitely take that result combined with a positive blood test and say it's celiac. I really think you'd do much better gluten free. I'm learning what a gluten free diet involves as well. Good luck :)

Jessica N. Rookie
Jessica N.
Posted
  • Author

I thought that's what the flattened villi meant too...I asked the nurse practitioner at my follow-up why the doctor would give me paper work on celiac and she said he must of assumed because of the flat villi that is what it would be. When I asked should I be concerned bc I know villi shouldn't be flattened she told me "not to focus on it" but didn't explain why.

Does flattened villi occur from other diseases/disorders?

Twinkelstars-Have you gone gluten free yet? What is your story?

Twinklestars Contributor
Twinklestars
Posted

This is my story :)

My link

I hope that worked! If it didn't, it's on about the third page of the pre diagnosis section. I'm gluten free at the moment, I'm not sure what will happen in the future at the moment, I need to wait until I see my doctor next :)

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