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A Very Long Road...

Jango

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Jango Newbie
Jango
Posted

Hello,

My journey started two years ago. I can pin point the day. I awoke in the middle of the night nauseous and thinking I was going to die. I felt horrible and it lasted for two weeks until I went to the Dr. and was placed on protein pump inhibitors due to excess stomach acid. I was diagnosed with reflux and sent home. It took about two months until the meds stopped working and I began to feel nauseous again, this time I also had heartburn, a great side effect of the meds I was placed on.

After countless months of feeling horrible I decided to visit a naturopathic Dr. for help. I was placed on a Gluten free diet and watched as my symptoms melted away. It was unreal. I also noticed that elements of my life that I didn't realize were attributed to the gluten began to improve. All my reoccurring canker sores went away, my energy came back, I lost 20 lbs, I could think clearly, my heart palps went away and my reoccurring painful bladder condition never reoccurred again. It was life changing. I have never been diagnosed with anything but my life has been transformed. Would you consider my symptoms Celiac or something else? I'm thinking of attempting to gain a diagnosis. Either way, I'm gluten free for life but I have children and I don't want them to live with the symptoms that I just assumed were part of being me.

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GFinDC Veteran
GFinDC
Posted

Hi,

Yes, it sounds like you could have celiac to me.

You could get the gene testing done for celiac genes. That would tell you if you have the genes for celiac, but not if you actually have celiac. Many people have the genes but don't develop the active disease. If you have been off gluten for a while it may be too late for the antibodie testing. The body quits producing the antibodies once the offending food is removed from the diet. That doesn't mean they go away completely at once, but the the antibodies testing may not detect them. Even when people are on a full gluten diet the failure rate of some antibodie tests is around 30%. People are also diagnosed through endoscopy biopsy. Again, this is not always 100% accurate test and the results are less sure after you are off gluten. Some people do what they call a gluten challenge, and start eating gluten again for several weeks before getting the antibodie and endoscopy tests. There is an article on the main board page about the antibodie tests and how they work. Dr. Ken Fine does stool testing at Enterolab and claims it is more sensitive than the blood antibodie testing. But that testing is not accepted by the mainstream medical people as an official diagnosis.

Alison St. Sure Newbie
Alison St. Sure
Posted

It sounds like you have celiac... but you could also have Non-Celiac Gluten Sensitivity. If you have been off gluten a long time, you most likely won't get a diagnosis of celiac because you will test negative. I think gluten sensitivity should be given as much credibility as celiac anyway! And the treatment is the same.

Jango Newbie
Jango
Posted
  • Author

Thank you for your comments. Its a frustrating thing. I went on the gluten free diet to see if it would help me and it did, but now I won't be able to attain a diagnosis unless I go back on it. I think that not knowing is the most frustrating thing for me.

I really just want to know what I'm up against.

mushroom Proficient
mushroom
Posted

Yes, there are a lot of us who went on a gluten free trial, and then got too far down the road to even think of eating gluten again just to get tested.

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