Strange symptoms after going gluten free?

[Sarahcat58]

So I’ve been suspecting I’m either celiac or gluten intolerant. My doctor wants to wait to see how my new diet is going. My stomach doesn’t have pain anymore, and so far I haven’t had any tinges or red on my toilet paper. (I’m told this is due to inflammation?). I’ve been on this diet for about three weeks. My bowels have been everything but normal. Sometimes I’ll have diarrhea maybe twice a week, sometimes I’ll have thin stools that go on forever because I haven’t had a bowel movement in theee days. I use to have a bowel movement everyday, now I feel like my body stores it up and everything comes out on day three. I feel very sleepy a lot as well. My doctor said if there’s pain and the blood tinged toilet paper comes back, then it’s time for a colonoscopy, but neither of those have happened so far. Is it normal for my bowel movements not to be regular yet?

[GFinDC]

  On 8/7/2018 at 10:10 PM, Sarahcat58 said:

....Is it normal for my bowel movements not to be regular yet?

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Yes.  It can take up to 18 months to heal the gut or more.  Your body will slowly stop making gliaden antibodies over the next months.   But it may take several months.   The immune system is very sensitive and alert for problems.  So even a tiny crumb of gluten will set off the a new reaction or prolong an existing one for weeks.   You have to be aware of cross contamination too.  That includes things like a jar of peanut butter that was used before going gluten-free.  It will probably have residual gluten in it.  A stick butter is the same problem.  Kissing a gluten eater before they brush their teeth, same issue.

It is safer to start the gluten-free diet by eating whole foods you cook yourself at home.  Eating things like meats, nuts, eggs, fruit and veggies, but no dairy.  It can also help to cut out sugar and carby foods like bananas or white potatoes.

The first 6 months are often a learning period and adjustment.  It gets easier after that IMHO.

Did your doctor test you for celiac disease?  He should have run a complete celiac disease test panel before you went gluten-free.  He also should have set up an endoscopy to check for gut damage.

[Sarahcat58]

  On 8/7/2018 at 10:34 PM, GFinDC said:

Yes.  It can take up to 18 months to heal the gut or more.  Your body will slowly stop making gliaden antibodies over the next months.   But it may take several months.   The immune system is very sensitive and alert for problems.  So even a tiny crumb of gluten will set off the a new reaction or prolong an existing one for weeks.   You have to be aware of cross contamination too.  That includes things like a jar of peanut butter that was used before going gluten-free.  It will probably have residual gluten in it.  A stick butter is the same problem.  Kissing a gluten eater before they brush their teeth, same issue.

It is safer to start the gluten-free diet by eating whole foods you cook yourself at home.  Eating things like meats, nuts, eggs, fruit and veggies, but no dairy.  It can also help to cut out sugar and carby foods like bananas or white potatoes.

The first 6 months are often a learning period and adjustment.  It gets easier after that IMHO.

Did your doctor test you for celiac disease?  He should have run a complete celiac disease test panel before you went gluten-free.  He also should have set up an endoscopy to check for gut damage.

Expand Quote  

My doctor said that since I’m so young unless I have pain and more blood, I don’t need an endoscopy (I’m 22). I’m wondering what to do about the blood test though, I’ve heard you need to have gluten in your system in order to get results back, I’m wondering if it’s worth the risk. 

[GFinDC]

I don't know your overall health situation, so I can't say if it is worth the risk.  That is a decision for you to make.  The gluten challenge is 12 weeks of eating gluten for the blood tests and 2 weeks for the endoscopy.  Your doc should have tested you before starting the gluten-free diet.  He/she isn't following proper diagnostic procedure for celiac disease.

The gluten-free diet is the life-long treatment for celiac disease.  Some people find it easier to stuck with the gluten-free diet if they are officially diagnosed.  For others it doesn't matter.

Edited August 8, 2018 by GFinDC