Confused About Endoscopy Results

[jenn42]

I'm going to make this short. My DD's blood work came back positive for Celiac. DH, myself and son are all negative for Celiac. The Endoscopy was done and the GI said there is absolutely no damage to the small intestine, looks very healthy. She has a tiny ulcer and a hiatal hernia, (don't we all). What does this all mean? She is still eating gluten with no complications. Any advice would be helpful. Do I go gluten free for her or not?

[adab8ca]

Blood work is rarely wrong. It tends to go the other way, people have negative bloodwork and feel tons better off gluten. A few things to consider. Maybe you caught it early so that the damage is patchy or almost non existant or they didn't take enough samples. Doesn't matter. You are saving her from potential health problems down the line!

Some enlightened doctors are diagnosing on blood work without a scope because of the sensitivity and specificity of the tests available. Again, I am not sure what tests she had done, so can't comment on her results.

There are a group of people called latent or silent celiacs where they have positive blood work, normal endoscopy and no symptoms. They many times go on to develop symptomatic celiac disease. I am a 6 foot tall woman and was diagnosed at 42. I was only sick for a few months but it hit fast and hard. Neuropathy, anxiety, insomnia, depression, weight loss. When I had the endoscopy, my villi were totally flattened. I asked the GI how long have I had this for, to have this much damage and he said all my life! Never a problem and then the poop hit the fan in a big way.

There must have been a reason that you had the test? What did the Dr. say to do? How do they explain the positive tests? What tests were done? Personally, I would do it but that's because I almost died, I was so sick. And none of my symptoms were "classic" celiac, so I feel SO lucky that it came out in some tests that we did to rule tings out!

I'm going to make this short. My DD's blood work came back positive for Celiac. DH, myself and son are all negative for Celiac. The Endoscopy was done and the GI said there is absolutely no damage to the small intestine, looks very healthy. She has a tiny ulcer and a hiatal hernia, (don't we all). What does this all mean? She is still eating gluten with no complications. Any advice would be helpful. Do I go gluten free for her or not?

[sharilee]

I'm going to make this short. My DD's blood work came back positive for Celiac. DH, myself and son are all negative for Celiac. The Endoscopy was done and the GI said there is absolutely no damage to the small intestine, looks very healthy. She has a tiny ulcer and a hiatal hernia, (don't we all). What does this all mean? She is still eating gluten with no complications. Any advice would be helpful. Do I go gluten free for her or not?

Last summer, I had a positive blood work for celiac and they did an endoscopy and it showed no damage to the small intestine. The doctor recommended testing in six months. Which I did and this time the endoscopy was positive. Last summer they did the blood work because of hypothyroidism (many increases in medicine were not working) and they wanted to see why. I had little to know celiac symptoms. But over the next six months I began to develop symptoms and in January it was real bad right before my second endoscopy.

The doctor I saw in February was not the same doctor I saw last summer. The doctor I saw in February did not agree with the recommendation of waiting six months and doing a second endoscopy. He said he would have had me start gluten free last summer despite the negative endoscopy.

So with my experiences, I had two different doctors with two different approaches with a positive blood work and a negative endoscopy. One wanted me to wait and have a second endoscopy in six months and the other would have had me go gluten free immediately despite the negative endoscopy.

If I had to do it all over again, I would have probably taken a middle of the road approach since I had little to know symptoms last summer. I would have gone for the second endoscopy the second the symptoms started worsening. Not waited a full six months until they were real bad.

You said you DD was not have any problems eating gluten. Was there a reason she was tested? If she is not having any symptoms, you might want to wait and see but the second she starts having any problems are symptoms I would have her retested.

My symptoms got worse when I was under severe stress at work and then emotional stress and they did not get better when the stress was gone. The stress seemed to trigger my celiac with full force.

[faithforlife]

I never thought I had symptoms either till I went gluten-free and felt a fog lift and way more energy. I thought the fatigue was just normal. My biopsy showed no flat villi but endo showed scalloping to the naked eye which could only come from years of being celiac. My blood was positive on all counts! Doc said you won't see scalloping in a young child usually but in someone who's had it years.

[Skylark]

I'm going to make this short. My DD's blood work came back positive for Celiac. DH, myself and son are all negative for Celiac. The Endoscopy was done and the GI said there is absolutely no damage to the small intestine, looks very healthy. She has a tiny ulcer and a hiatal hernia, (don't we all). What does this all mean? She is still eating gluten with no complications. Any advice would be helpful. Do I go gluten free for her or not?

Did he take a decent number of biopsies, and what did the report say?

[jenn42]

Ok, we finally have confirmation. Blood tests, genetic testing are postive for Celiac. The Endoscopy isn't showing any damage or signs of Celiac as of right now, but may in the future if she continue's eating gluten. The doc is still diagnosing Celiac and wants her on a gluten free diet for 6 months and recheck blood at that time. Are the follow up visits usually 6 months, and is blood work needed each time? Maybe that depends on the doc? So, I guess this means we caught this in time before any damage. I do realize that every case of Celiac is different, with everyone having different symptoms and such. We do believe that my DD has slight nausea with minor headaches, and we are thinking maybe some behavior/anxiety issue's when on gluten.

I'm glad all the testing has been completed. It took quite some time to get this done. I feel relieved for some reason. I hope that's not a bad thing. We finally can get closure and get started on this whole new way of eating. I thought I did a lot of research before all the testing and I still feel so confused as to where to start. I know everything will come together eventually.

[StephanieL]

This is exactly our story. (well almost. DS was pretty much asymptomatic before dx except for a 0 Vit. D level).

We were given the option of doing biopsies every year or upon symptoms OR go gluten-free and do blood work in 6 months. After a few months of going over and over we went gluten-free.

His tTG was 129. At 6 months gluten-free, 48.

His biopsy was inconclusive. About 2 months ago I had the slides sent to a top Celiac specialist who said they were negative. They are guessing that he just didn't have any intestinal damage yet (he was a fresh 3 at the time of the biopsy and was breast fed till 12 months so not a ton of gluten exposure).

You can do it (and really, what choice do we Mom's have? lol)

[Bubba's Mom]

I think a retest of the bloodwork at 6mos gluten-free is pretty common? It's the easiest way to see if the antibodies are coming down.

It's wonderful that the endoscope didn't show a lot of damage. Going forward on a gluten-free diet your daughter should feel better..and more importantly, avoid any additional health issues because of the gluten.