Contradictory Test Results

[Guest NitaB]

Hi,

I'm new to these boards, and very glad to have found them! It looks like I could spend hours, just trying to find out all I need to know! (have spent a few, already!)

I have had digestive problems for over 20 years, maybe closer to 25. The old Dr. called it Colitis. I quit caffeine, didn't have spicey foods or hard to digest foods in one meal. (pizza, salad, and cola, triggered bad!) Helped some, but had flare-ups still.

The next Dr. called it IBS, and has given me prescriptions for antacids, an IBS med, and said I just have this bad system! But, during a routine colonscopy (my older brother died of colon cancer at age 63, was 14 years older than I) I was then blood tested for celaic, by the gastroenterologist. Came back negative. That was 8 years ago.

This April I had a change in ownership on my job, giving me more stress than usual. I started having bad stomach pains. The Dr. sent me for a gall bladder ultra-sound. It came back neg. She sent me to the same gastroenterologist for an upper endoscopy. Those results looked to him like celiac, due to lesions in the duodenum. The lesions showed flattened villi. So, he now had me do a more thorough blood test, celiacplus. Cost a whopping $730!!!! It also came back neg! His advice was to try the gluten-free diet to see.

Anyone else have this happen? Any other tests I should have? Or is the biopsy close enough to believe I have celiac? I'm trying gluten-free, but oh is it hard! I also can't understand the importance of those cross contaminants being that important. I asked on another thread, about CC's, traces of gluten in make-up, vitamins, drugs, the toaster! Blows my mind! If a trace is going to give me those pains again, I'll try to understand!

I also am trying to decide if I need to give up dairy. It may be bothering me, too. Will lactase tabs help the dairy, or not? Is there any type of milk or cheese that will be okay? How about eggs?

Thanks for all help! I'm sure I'll have more questions as I learn more!

Nita

[kalo]

Hi Nita. Sorry to hear about all you've been through. I'm currently being tested for celiac disease. My father had chrons and my grandfather on my mothers side also died of colon cancer. Never heard of that blood test you had. I would do a search for enterolabs where for about half of what you paid for the blood test you can get a stool test that is supposedly the most sensitive and accurate in the world. If it comes back negative then it has to be something else. Otherwise if you have it it will show up. Have you given up dairy to see what happens? Hoping you find answers soon. I've been searching for 55 years and more desperately for the last 20 so I really understand. Hugs, Carol B

[flagbabyds]

my sister has put herself on the gluten-free diet and she feels so much better. she had the endoscopy and it showed no damage at that time her bloodwork was positive. she put herself on the diet like a month ago and has cut out all sources of gluten. she has now just gotten home from college and is feeling much much better. i think the best test is tp put yourself on the diet and if you feel better than you have it and if you don't feel better then you have something else wrong with you. try the elimination diet cut out all dairy eggs gluten soy and eat plain foods for a week or so and then add one thing in at a time, then if something makes you sick don't eat it.

that's all i can say

[Guest jhmom]

Hi Nita,

Yes I understand what you are talking about. I too had a very stressful job and here came the GI probs (never had them before). I went to the doc, he thought it was IBS, couple months later I lost 40lbs in 2 months, he then thought Celiac so he ran blood test, they all came back negative. More time went by and I went through all sorts of test all to come back negative. Back in Sept I was dx through Enterolab and have been gluten-free since.

I have heard it is possible to have positive blood work and negative biopsy or vice versea. It is also possible to have EVERYTHING come back negative and still have Celiac / gluten sensitivity! It takes time for things to show up in the blood or damage the villi in the small intestines.

If your doc dx you through a biopsy then YES you have it and must adhere to a strict gluten-free diet for life! I do not think it's necessary to go through more testing. I know it's hard but it does get easier. If you see that you are still having a problem after going gluten-free then dairy could be the culprit, take it out for a while and reintroduce it slowly.

I hope you continue to feel better!

[Guest NitaB]

Kalo, Flag, and Stacie,

Thanks for your help! I need all the advice I can get! I'm trying the gluten-free diet, but I'm learning it may also be the little things, traces, that can get me.

I'm fortunate in that I was able to take an early retirement, being 55 and over 10 years service. So, the stress is out, but the probs with the tummy aren't gone. And I have never lost weight with this! But, I have eaten a lot, for my size, over the years, and maybe that's why I could eat so much!

I also wonder about my oldest brother having had this, and getting the cancer because of it. Another older brother has bad stomach probs, too. I need to have him try gluten-free and see if it helps him. He's retired, with no insurance, so would be a good way to see.

One daughter has lupus, so might benefit from gluten-free, also.

I truly appreciate the help!

Nita

[Guest jhmom]

You are welcome Nita! Yes, since you do appear to have Celiac you should suggest testing to your family members. Another route they could take especially the brother with no insurance is Open Original Shared Link which is a stool panel test and is more sensitive than blood and a more accurate way of testing.

My doctors suspect that I have Lupus too and the gluten-free has not improved any of those symptoms but a lot of times when you get one auto-immune disease it is more likely that you will get more (oh boy aren't we lucky)

A lot of times there are ingredients that we overlook on this diet, so here is a link that may help you:

Safe and Forbidden Food and Ingredient List

Mainstream Products that are gluten-free

[Guest NitaB]

Stacie,

Thanks for those links. I think I hadn't noticed them yet. I'll print them out, to check again. I have emailed some companies to ask if their products were gluten-free. I need to call others, too.

I think this is my first truly gluten-free day! I feel pretty good tonight! Even after a family barbecue! I had potato salad and devilled eggs, made just for me! Some was set aside for me to add my gluten-free mayo! I also had fruit, jello, a plain hamburger patty, and some gluten-free brownies, made just for me! The best part is, I think I feel good! Yaaaaaaaay! It was nice to get my first family gathering over, with no probs. And I don't feel as tired as I usually do!

Thanks again! I appreciate the help from those who have gone before me! It is much easier than trying to read everything in a few days!

Nita

[flagbabyds]

THAT'S Greatttt goodd you are finally adhearing the the gluten-free diet and you already feel better

[Guest jhmom]

Hi Nita,

At first this diet , change in lifestyle I like to call it, is very overwhelming but once you see symptoms like abdominal pain disappear it get easier and easier ! My 8 year old is still learning as she cheats here and there at school , but I am happy to report I have NOT cheated since I started this diet, I am too scared of the symptoms !!!

I am glad you are feeling good and most importantly that you can tell a difference when you are 100% gluten-free!! Keep it up and hang in there!

For more links like the one I sent you, look at the site menu on the left side of the screen and click on "Site Index", there is a list of helpful links.

[Guest NitaB]

Molly,

Thank you!!!!!! And guess what, I feel good this morning, too! Whew!

Stacie,

Yes, I'm sure it will get easier. When something becomes routine, it is always easier! I will check out all the parts of this board, as I find time. There is so much to read, but I want to read it all. Thanks for your help and encouragement! It's people like you, Molly, and others, that make this board so good!

Nita