Blood screening false negative??

[Ted33]

I am waiting for my ebdoscopy biopsy results. One of the biopsys was to test for celiac. I had a blood test for celiac screening a few days ago and my test has come back as negative. Could i still have celiac disease? Im really confused as from my symptoms are really bad.. help!

[GFinDC]

1 hour ago, Ted33 said:

I am waiting for my ebdoscopy biopsy results. One of the biopsys was to test for celiac. I had a blood test for celiac screening a few days ago and my test has come back as negative. Could i still have celiac disease? Im really confused as from my symptoms are really bad.. help!

Hi,

Yes, it is possible for the blood antibodies tests not to show positive but still have celiac disease.  Some medications can cause this to happen.

[Ted33]

So Is this quite common?  I have an appointment with the consultant for my biopsy results on tuesday but the wait is so frustrating

[trents]

Even biopsies can miss celiac disease unless the physician doing it samples from several areas of the small bowel. Sometimes the damage is patchy. Some docs don't realize this and so don't do a thorough job of the sampling.

Edited April 13, 2021 by trents

[Ted33]

Hopefully i will get some answers next week. 

[Scott Adams]

Note that only about 1% of people have celiac disease, but around 12% have non-celiac gluten sensitivity. They are still doing research to find a way to screen for NCGS, but currently they don't have a reliable way to do this. Dr. Kenneth Fine of Enterolab claims that his stool testing can do this, and many people on this forum stand by his methods. He also offers genetic testing for celiac disease. The main point of my reply is that just because you may test negative doesn't mean that you don't still have non-celiac gluten sensitivity.

[Ted33]

I am considering trying a gluten free diet. Do you think i should wait to see what my results say first?

[ravenwoodglass]

1 hour ago, Ted33 said:

I am considering trying a gluten free diet. Do you think i should wait to see what my results say first?

It sounds like you are done with testing so IMHO it is not going to hurt to go ahead and start the diet. The treatment for Celiac and NCGS is the same and both need a person to be just as strict with the diet. Just make sure you are being strict with the diet and keep in mind that some symptoms may resolve quickly others may take some time. Sometimes the body gives us answers that all the tests don't.

[Ted33]

Its definately worth a try. i cant take much more of being so ill . Thanks everyone for yor advice x

[trents]

The challenge now is educating yourself as to where and how gluten is found in the processed food supply and in commercial eateries. At first, you tend to take for granted that it won't be in this or that kind of processed food but over time you learn how they stick it in things you would never expect and hide it by terminology. For instance, would you expect to find gluten in canned tomato soup or broth? It's there. In fact, gluten is included in most canned soups because wheat is a cheap thickener. Would you expect to find it in soy sauce. But it's there too, at least in most brands. Many chocolate syrups have gluten in them. And corn flakes or rice chex? They often put "malt flavoring" in breakfast cereals. And wheat can be included as a filler in pills and meds. On and on. And then there is the whole issue of cross contamination where foods don't have gluten as an intentional ingredient but they come in contact with gluten containing food items in the cooking or handling. An example would be you go to a fast food restaurant and order fries and a plain burger patty without the bun. But you didn't think about the fact that the fries were cooked in the same oil as the breaded chick nuggets someone else ordered or that the burger was cooked on the same grill as the breaded fish patty. Or the gluten free noodle dish at your favorite Italian restaurant was boiled in the same water as regular wheat spaghetti noodles yet it was advertised on the menu as "gluten free." Or that your gluten free sub sandwich was sliced with the same knife as the wheat bread ones they sell. You get the picture by now, I hope.

Edited April 14, 2021 by trents

[Ted33]

I definatley will need to do my research!

[Pat Jackson]

Ted33, I am one of those with negative blood tests but positive biopsy.  I knew for years that wheat was a problem for me, but the symptoms got worse and worse and even worse, so when I finally saw the GI dr, they did all the tests at once.  Going gluten free has made such a big difference in my quality of life!  The two major issues I had were with severe (and I mean really severe) bloating and IBS symptoms.  Both have improved a great deal.  Interestingly, I found a few other things that I've just lived with for years, but are now nearly gone too.  

[Ted33]

Glad to hear your feeling alot better now it must be such a relief.

I was told i had ibs years ago but these past 8 months have been awful. My iron is really low i have Constant nausea, bloating,fatigue, cramping etc and a permenant stabbing pain in my stomach. I cant get around without being in agony so to top it off ive put on loads of weight and have been eating lots and lots of sweet things which for me is unusual. I just want answers then whatever the problem is i can deal with it and hopefully get better.