Celiac Disease?


(kcreig1) #1

I've got a question to ask...

I've had abdominal pain for 5 years, been tired all the time, upset stomach, and skin problems. I stopped eating wheat in July because an applied kinesiologist my sister recommend said that I should. Once I did, I started feeling better in the first day or so. So I loosely kept a gluten free diet, sometimes getting abdominal pain. It wasn't until I went strictly gluten free did the pain completely stop.

However, I finally got tested for celiac, and the blood tests are negative. I have yet to go back for biopsy. Has this happened to anyone else? Has anyone else had a negative blood test but had all the symptoms for celiac? And should I go get a biopsy to make sure?


(golden12) #2

If you've been on a gluten free diet, your blood test will come back negative.  Gastroenterologists will tell you not to become gluten free until the celiac disase has been confirmed.  The test that they do tests for the presence of certain antibodies and will only be positive if you are still consuming gluten. 

My boyfriend has been gluten free for two years and when they test for the celiac antibodies it comes back as if he doesn't have celiac disease, simply because he doesn't ingest any amount of gluten.  If you feel much better now that you're gluten free, I would keep the gluten free diet even if the test is negative.

Remember that wheat free does not mean gluten free and gluten is found in many sources beyond wheat.


(kcreig1) #3

Ok, that makes sense. I have a follow up appointment with my Endo next week and I'll bring this up with him...

Yeah, speaking of gluten in not just wheat - Ate Dannon yogurt the other day and was sick two hours later. It was a dannon light and fit. Looked it up online, and it was totally made with gluten. Awesome!


(sarahslp) #4

Hi Kristen,

I just went through this in the last few months. I was having stomach pains, so went to see a GI dr. b/c there are a variety of GI issues that occur more often in people w/ T1. My blood test also came back negative (I was on gluten). So, b/c my vit D levels were low and b/c of my D, the GI doc decided to do an endoscopy. I'm trying to remember ... I think she said you have to be on gluten for 2 or 3 months before for the results to be accurate. She said than in something like 10-20% of people who have a neg blood test, the endoscopy / biopsy still comes back positive. She also said that there are some people who test neg for Celiac, but are still sensitive to gluten and may need to avoid it anyways.

Thankfully, my endoscopy last month came back negative for Celiac. I had gastritis which was probably causing some of my problems.

Good luck and I hope you can find some answers from a GI dr who is familiar w/ T1! I know there are many people on here who are gluten-free so I'm sure they can provide you w/ tips and info!


(system) #5

[quote user="Kristin Creighton"]

I've got a question to ask...

I've had abdominal pain for 5 years, been tired all the time, upset stomach, and skin problems. I stopped eating wheat in July because an applied kinesiologist my sister recommend said that I should. Once I did, I started feeling better in the first day or so. So I loosely kept a gluten free diet, sometimes getting abdominal pain. It wasn't until I went strictly gluten free did the pain completely stop.

However, I finally got tested for celiac, and the blood tests are negative. I have yet to go back for biopsy. Has this happened to anyone else? Has anyone else had a negative blood test but had all the symptoms for celiac? And should I go get a biopsy to make sure?

[/quote]

i've been tested for celiac, as well my mom has been tested and my cousin(female) tested. all three of us came back negative, but all three of us have celiac symptoms when we eat things with a lot of gluten in them. i found cutting back on bread, and heavy beers(corona is made with korn, so i drink that more often now) helped a lot. i still get tummy pains, but they aren't as bad as they were before i cut-back on those things(at one point i called 911 and went to the ER because i woke in the middle of the night is so much pain i couldn't walk...).

I would go back and get the biopsy done if you're still experiencing the same amount of pain.


(Sarah_0776) #6

I don't have celiac myself, but I have a friend whose mom and sister both have it. She started to have the symptoms (I remember one time I stayed the night at her house and we had waffles for breakfast. She was laying on the couch in so much pain after that), so she got tested, thinking she had it since both her mom and sister do. The test came back negative, and I know she's gotten tested more that once, and they've all come back negative. She keeps a gluten-free diet now, anyway, and feels so much better.