Help-I Think I'm On To Something Here!

[MizzyLou]

Hello - I am a 38 year old female, who has been struggling with digestive issues for 4 years.  My symptoms include loose stools/diarrhea and a constantly grumbling stomach.  I have had a colonoscopy, endoscopy, blood work, and a hida scan.  Everything has come back fine except for the endoscopy, which revealed some mild inflammation of the lining of my stomach (gastritis).  I had always been perfectly healthy, no allergies of any sort, and absolutely no digestive issues until 4 years ago.  It began with an upper abdominal attack (severe pain that came in waves), that led me to the ER.  They suspected gallbladder, but after ultrasound revealed no stones, they sent me home to die as far as I'm concerned.  I was fine the next day and brushed it off as some crazy gastritis or something.  Two months later I had another attack.  This attack was worse and along with the severe pain, I had terrible diarrhea.  I didn't go to the hospital for fear they would send me home again, and just kept thinking that if I could make it through the night, I would be ok.  This wasn't the case.  The pain went away after that night but the severe diarrhea continued for weeks.  It wasn't until I thought I saw blood that I went to my doctor.  He ordered a stool sample, which came back normal.  At one point during this episode, I pooped solid enough to notice that one time, and one time only, the poop was white.  Pure white.  After several weeks of uncontrollable diarrhea, it subsided and what I am left with now is loose stool, every day.  After talking to a friend last week, and telling her I was about to jump off a bridge because of this (not really, but want you to understand the level of frustration), she suggested I follow the blood type diet.  I had bought the book years ago and dug it out the next day.  After looking it over I decided that just about the only thing I was eating everyday was gluten.  I decided to go gluten free.  After two days my stools were almost normal.  It has been a week now, and Iast night was the first time I ate a meal (gluten free) where I felt like I was really eating in four years.  I know that sounds strange, but something inside is different.  I can't explain it properly, but it's almost as if I can eat without reserve now.  What hasn't stopped is the noisy stomach that's driving me crazy.  My question is, has anyone developed this due to an attack of some sort.  I have read that pancreatitis and Celiac go together.  I am wondering if it was a case of pancreatits.  I am also wondering, since I was pregnant during the last four years and my symptoms got better during pregnancy, if the doctor who performed the endoscopy may have missed Celiac.  I know you can be intolerant of gluten and not have Celiac. Thanks for any replies.

[bartfull]

Unless the doctor did a biopsy during the endoscopy, he didn't test you for celiac. But whether you have celiac or NCGI, you haven't been gluten-free long enough to see complete healing. Also, for the first two or three weeks you will probably have gluten withdrawal, and a rumbing stomach is not uncommon (along with hunger, headaches, mood swings, and other unpleasant symptoms).

 

You are obviously on the right track. Read the Newbie 101 thread and you will learn about how to avoid cross-contamination. Ask lots of questions. Check out the breakfast/lunch/dinner threads for meal ideas.

 

Welcome to the forum! I'm sorry it took so long for any of us to reply, but we're glad you're here and will help you in any way we can.

[MizzyLou]

Unless the doctor did a biopsy during the endoscopy, he didn't test you for celiac. But whether you have celiac or NCGI, you haven't been gluten-free long enough to see complete healing. Also, for the first two or three weeks you will probably have gluten withdrawal, and a rumbing stomach is not uncommon (along with hunger, headaches, mood swings, and other unpleasant symptoms).

 

You are obviously on the right track. Read the Newbie 101 thread and you will learn about how to avoid cross-contamination. Ask lots of questions. Check out the breakfast/lunch/dinner threads for meal ideas.

 

Welcome to the forum! I'm sorry it took so long for any of us to reply, but we're glad you're here and will help you in any way we can.

Thank you so much for your reply.  I have been learning a lot these past few days.  I have a couple questions if you don't mind...I am almost positive that the doctor did not do a biopsy.  He didn't even talk to me afterward, only to my husband, who said he was more focused on the colonoscopy part of the exam.  I am going to ask my doctor to obtain a report of the endoscopy to make sure, but in the event that he didn't, how long do you think I can remain gluten free and still have testing done?  I know that's a magic question, but everything I've read talks about months.  Do you think if I've been free for weeks I would still test positive?  Also, I have had awesome bowel movements since starting gluten free, then today I had some loose stool.  Is it normal to have relapses like this?  I know it's too early to tell, but I'm afraid that it was a fluke, although I haven't ever had that much improvement in four years!  I'm sure I have been getting small amounts of gluten as my kitchen, and family for that matter, are not gluten free.  Could it be that my body has gotten over the initial shock of going gluten free and it's returning to it's same old self?  Do most people who experience a dramatic improvement early on usually continue on a good path?  Sorry for all the questions.  This is all so new to me as I haven't been looking in this direction until recently.  I actually never thought the gluten free thing was going to make such a difference, but was desperate to feel better, and since doctor's haven't been able to figure it out, I decided it was time to take responsibility for my own body.

[bartfull]

If you want further testing you need to be eating gluten. After a few weeks off of it you would need to go back on it - most folks say for three months. It's up to you. A lot of us are self-diagnosed. If you think it's important to have an official diagnosis, go for it. If you are staisfied that gluten-free makes you feel better, just stay gluten-free and forget about the doctor.

 

It is not unusual to have a few weeks of feeling great and then having a relapse. (It happened to me. I developed, or should I say uncovered, additional intolerances to both corn and soy.) But it sounds to me like you are getting CC'ed. You need your own dedicated condiments so no one contaminates them by double dipping. Your own toaster. You need to get rid of any scratched plastic or teflon. You need to avoid previously used wooden spoons and cutting boards and strainers. You need to make sure you don't wash your dishes with a gluten-y sponge. You need to use gluten-free lipstick and shampoo. Also, you should check any medications or supplements you take.

 

It sounds SO hard, but I promise, after a while it will become second nature. Read as many threads here as you can and feel free to ask as many questions as come to mind.