No relief

[V123]

Hi, 

I had a negative endoscopy as said in last posts. I am on an elimination diet through my dietician, and I haven’t been eating gluten. It’s been three weeks since I started, and I haven’t gotten measurable symptom relief. I’m starting to get worried that gluten isn’t the problem, and going back to square one. My dietician seems to be worried that I haven’t been feeling better. Some things have improved, like constipation and hot flashes, but this could be due to eating healthier. Is it abnormal? I also got blood tests done yesterday, one for lead because my school found lead in our water, one for Lyme to be safe, even though no one thinks it’s Lyme, and one blood test for my blood sugar because it was high on a non fasting test so they had me do a fasting test. Also, i got a rash yesterday on my arm after only eating a smoothie after my tests. I couldn’t take a picture because i was in school, and it’s faded now. 

[GFinDC]

Hi V123,

Have you been tested for Crohn's Disease?  I saw in another thread you said that you had a fissure.  Fissures don't usually happen with celiac disease but do happen with Crohn's Disease.  Some people with Crohn's Disease do go on a gluten-free diet though as they say it helps their symptoms.

Three weeks is not very long for your body to heal.  A study some time ago found that it can take 18 months or longer for gut healing to happen for celiacs.  But some people heal faster, some slower.  It depends a lot on how good you are at keeping the irritating foods out of your diet IMHO.  In celiac disease, even a small crumb can cause a reaction.  Since it is an immune reaction, it can go on for months.  So you really have to be careful to avoid even traces of gluten that you can't see.  Sharing a peanut butter jar with a gluten eater is a no-no.  So is using a toaster that people put regular gluten bread in.

It can take a while to get the hang of the gluten-free diet and learn how to avoid all the hidden and obvious sources of gluten.  Cross-contamination is an issue we have to be aware of.

By the way, if you click the green circle to top right of your thread title, you can follow the thread for updates.

[V123]

Thank you,

I will be more careful with contamination. I was tested for crohns and negative 

[cyclinglady]

Three weeks is such a short time to expect dramatic healing from celiac disease. The learning curve for the gluten-free diet is steep!    Don’t forget, damaged areas can be missed in the small intestine because it is the size of a tennis court!   If your symptoms do not improve within six months or so (not perfect, but improved) ask about IBD (Crohn’s) testing.  My niece had her Crohn’s diagnosis caught by a pill camera.  All other tests, including celiac disease (unlike you, both blood tests and biopsies were negative).