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Negative Lab Tests...and Still Be Gluten Insensitive? What Other Tests?

Sbwife14

By Sbwife14
in Coping with Celiac Disease

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Sbwife14 Rookie
Sbwife14
Posted

Brief history.,,I had my gallbladder removed 2 years ago. About 6 months later I began having excruciating abdominal pains and flatulence and gas to the point of not being able to eat or drink anything..even water. Other symptoms were migraines, fatigue, extreme GERD, trouble concentrating feeling like my head was in a fog, constipation, feeling like I had lifted weights but I hadn't, anxiety, trouble sleeping, occasional depression. Little did I know this was all related.  I suffered with this for 7 months before my employer (who is an ENT) heard about my symptoms and made me go back to my surgeon. He ran EGD and found GERD and gastritis and placed me on 2 reflux medications. I was religious in my diet to prevent GERD but no relief.  After several months of fighting with it I referred myself to a GI specialist. I talked about Celiac and ran blood tests. They came back negative and he gave me a script for a GI cocktail and said "see you in 3 months". I was very discouraged so I did my own research on Celiac and decided to try a gluten free diet.  Every single one of my symptoms disappeared and I am down to taking 1 reflux medicine twice daily (I was taking 2 twice daily). My mood improved, sleep improved, migraines disappeared.  I thought I would introduce gluten back in to see if symptoms returned. I had 3 slices of pizza...one of the worst migraines I've ever had, constipation returned, reflux worsened. I did this 3 different times.  But I've not had any other tests to suggest gluten intolerance.

Also, I am having trouble coping with this. It is a hard adjustment for me.  I am glad I found this site. I could use the support and any advice is welcomed! I don't know anyone personally that deals with this. Thanks in advance!

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BlessedMommy Rising Star
BlessedMommy
Posted

It sounds like you have NCGS. (non-celiac gluten sensitivity) Either that or you could possibly be a seronegative celiac. There are a few people on this board who tested negative on a blood test and positive on a biopsy. If you are not too far into gluten free, you may want to try a biopsy.

 

The standard for diagnosis of NCGS is if celiac tests are negative, to remove gluten and see if symptoms improve. Sounds like you've already done that and they did. So regardless, you know that gluten is an issue for you. Congrats on taking charge of your own health.

 

I'm an unclassified gluten free person (doctors couldn't figure out the source of my symptoms and I didn't think to test for celiac until after I went gluten free and by that point, I had very severe symptoms when I put it back in and wasn't able to continue with the diagnostic process) and I've gotten to the point where I don't really care as much whether people think I'm following a fad. I know that I'm not and I know what gluten does to me. There's nothing faddish about taking charge of your own health.

 

Welcome to the board! :)

glutenfreeliac Collaborator
glutenfreeliac
Posted

Acid reflux (GERD) was what started me on this path. I'd always had digestive issues, but had chalked it up to normal. Alas. After a year or so of every test and medication possible, I was still in agony. Nothing was improving. My doctor suggested (finally!) dairy elimination and celiac testing. The dairy wasn't the issue. The celiac tests were inconclusive -- blood, yes; endoscopy, no -- but a gluten-free diet changed my life. My doctor is in the "celiac is a spectrum" camp, and believes I have it. I know that I am healthy, happy, and gluten free. 

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Thanks so much for the replies! IM so glad I found this website! BlessedMommy, I think I'm too far into gluten free to biopsy. I don't know how far into it is too late but I'm now to th point where I don't have excruciating pains and extreme GERD. Now if I've consumed gluten I mainly feel very tired, mood changes..sometimes headache..sometimes mild bloating or increased reflux. NOTHING like before I tried gluten free. A lot of people act like it's not real or you're just wanting attention. I know for a fact this has made a huge difference for me!! It's a hard adjustment but I'm taking it one day at a time.

Glutenfreliac, it's been a long journey for me too. ThiNg is the specialist I went to didn't suggest anything which was very frustrating for me. He mentioned celiac then with negative labs offered nothing else. That being said I'm still glad I went and he mentioned it because I had never thought of that. I just knew something was wrong. I work for an ENT. We see patients with GERD a lot...and reflux meds helped. For me I knew I was on way too much and shouldn't be dealing with GERD in the severity I was...vomiting bile after following anti reflux food precautions and taking 2 meds twice a day. I was willing to try anything. When I looked into it I found that GS will cause GERD to be worse. That got me started. I didn't realize all of the other symptoms were even related until I was gluten-free. I AM HEALTHIER ND HAPPY!

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