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Re-Testing For Celiac

StephKelly

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StephKelly Newbie
StephKelly
Posted

Hi all - I'm new to the forums and am working on going gluten-free. About 2.5 years ago I was tested for Celiac with both a blood test and endoscopy with biopsy. The results came back indicating that I was "gluten sensitive" and did not have Celiac disease. I went on a gluten-free diet for a period of time and was feeling better, but once I learned I didn't have Celiac I went back to eating foods with gluten in them. I was also tested for lactose intolerance, as I've had issues digesting milk, ice cream, and some cheeses for as long as I can remember. The results came back indicating that I am "lactose sensitive" but not intolerant.

I have continued to have stomach issues, and have been putting some pieces of my health puzzle together and wondering if I might have Celiac after all. I've experienced some changes to my health and general state of being (like fatigue), however my dad passed away earlier this year and so I'm not sure if it's coping or something else that's the cause. I'd imagine a combination of factors.

It was extremely frustrating to be told that the things we thought were wrong with me actually weren't, and they couldn't determine why I was (and continue to have) stomach issues. I stopped pursuing a diagnosis out of frustration. In light of recent developments, though, I've been thinking about getting re-tested. My big question is if it's possible to be tested again and get different results, or if once you're tested and it comes back negative that's the end and time won't change the results. I certainly don't need a diagnosis to change my eating habits, but knowing what's going on with me would be nice.

Thanks!

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Skylark Collaborator
Skylark
Posted

What, exactly, were the results that lead your doctor to say you were "gluten sensitive"? That doesn't sound like a negative celiac test.

Celiac disease is progressive and yes, you can start with feeling ill from gluten and no blood/biopsy and progress to positive blood/biopsy. There are triggers like illnesses, stress, or pregnancy that can cause someone to develop celiac disease. It's also reasonably common to get get quite ill from non-celiac gluten intolerance and never have positive celiac tests.

There is no harm in getting retested while you're still eating gluten. No matter what the results I would encourage you to go back to gluten-free after the test is done and see how you feel.

cbonner Newbie
cbonner
Posted

Hi Stephkelly.I read your post and thought I could have just changed the name and used it as my own.I (we) get so tired after 20 + years of going to doctors with no answers.I just walked in the door with my blood test that proves I am not celiac and like you I was hoping for the test to provide me with an answer.I know your frustration!I can't even spell hypocondriac ;but I are one.

Going gluten free seems to help me ;so I will continue to avoid it.It just gets to the point where any thing that improves how you feel is worth the effort.I have given up on help from the medical profession and feel the members of this forum make more sense than my doctor.

I hope going gluten free makes you feel better and maybe some day medical doctors will find a way to help us! Good Luck Charles

Roda Rising Star
Roda
Posted

It wouldn't hurt getting retested since you are consuming gluten. I agree with the PP that after you are done with testing go gluten free since you said you felt better that way.

Yes your test results can change. In hindsite I think my youngest son had a gluten issue since he was an infant. By the time I found out I had celiac he was almost 4 and he "seemed" to outgrow the issues he had as a baby/toddler. (his current allergist says that the reactions don't go away just change) I had him, and his older brother blood tested and they were both negative. Two years later when my youngest son was almost 6 he was retested and he had positive blood work. We did not do a scope/biopsy on him and felt confident he had celiac based on his symptoms, positive blood test and a parent with diagnosed celiac. He has been gluten free for a year now and is doing wonderful.

My oldest son has tested negative at least 4 different times on his bloodwork. I decided to have a scope on him just in case he had false negative bloodwork. He had a negative scope/biopsy also. However, due to symptoms and issues he had we decided to trial him gluten free anyway. It has been 3.5 months now and the changes that have started to happen are not easily ignored. He has had dramatic improvement in several areas. So even though the tests "say" he is not celiac, gluten is bad for him none the less.

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