Negative Blood Test...should I Be Skeptical?

[leadmeastray88]

I've been suspicious that I have Celiac's for a few months now. Here are my symptoms:

-lower abdominal cramping

-extreme fatigue

-nausea (especially after eating, and when I wake up)

-bloating

-irregular bowels

I am also vitamin B deficient, I don't know if that is related or not.

I had a blood test a few weeks ago and i got the results today - they were negative.

Did anyone else have the same symptoms and had a negative blood test but positive biopsy? I'd love some reassurance

Thanks in advance!

[Tim-n-VA]

All medical tests have false positives and false negatives so there is always some reason to be skeptical of any result.

You said you suspected celiac, had you modified your diet prior to the test? Most medical tests for celiac are testing for a reaction to gluten or damage caused by gluten. If you were off gluten prior to your test you have even more reason to be skeptical.

Other diseases overlap celiac in symptoms so that is a reason not to be skeptical, especially if you were still eating gluten.

[leadmeastray88]

  Tim-n-VA said:

You said you suspected celiac, had you modified your diet prior to the test? Most medical tests for celiac are testing for a reaction to gluten or damage caused by gluten. If you were off gluten prior to your test you have even more reason to be skeptical.

No, I have not modified my diet at all. I have been eating as normally as possible, although I find it hard to because I always feels nauseous after I eat.

I have also noticed that I have dropped 6 pounds since December. :S

[Ursa Major]

There are some people here who had negative blood work and a positive biopsy. But it is true that if you started the gluten-free diet prior to the blood test, then you are even more likely to get a false negative.

If you still think you have celiac disease (which is a definite possibility) you could have an endoscopy with biopsy. If that comes back negative (if you do it) you can try the gluten-free diet. There are plenty of people here who are on the diet who either never had testing or had negative testing, but know they are gluten intolerant because of the amazing difference on the gluten-free diet.

I have never had any testing done, but I will get an awful reaction if I eat gluten, so I don't.

[leadmeastray88]

  Ursa Major said:

There are some people here who had negative blood work and a positive biopsy. But it is true that if you started the gluten-free diet prior to the blood test, then you are even more likely to get a false negative.

If you still think you have celiac disease (which is a definite possibility) you could have an endoscopy with biopsy. If that comes back negative (if you do it) you can try the gluten-free diet. There are plenty of people here who are on the diet who either never had testing or had negative testing, but know they are gluten intolerant because of the amazing difference on the gluten-free diet.

I have never had any testing done, but I will get an awful reaction if I eat gluten, so I don't.

Thanks fo the great info

It's nice to have some support, because I've had many health issues the past few years and I've been from doctor to doctor telling me that things are in my head when they really aren't...and then they put their foot in their mouth after they've been proven wrong.

I just want to know what is wrong with me, that's all. At this point, I'm indifferent to what it is, I just want to know.

[kayavara]

  leadmeastray88 said:

Thanks fo the great info

It's nice to have some support, because I've had many health issues the past few years and I've been from doctor to doctor telling me that things are in my head when they really aren't...and then they put their foot in their mouth after they've been proven wrong.

I just want to know what is wrong with me, that's all. At this point, I'm indifferent to what it is, I just want to know.

I am one of those people that have had a negative blood test and biopsy (although my biopsy reads"villous blunting and atrophy").....it's being called negative by the lab but perhaps questionable by the GI.He did tell me negative tests were not uncommon because of numerous reasons. I went gluten free when the he called and said to do so around 6 weeks ago.....even after he received the negative biopsy report....partly because of my bloating,stomach distention,gas,depression,heartburn,numerous aches and pains,itchy skin (not defined as DH)etc.

I was instructed to do so for about 4 months when he would then do another biopsy to see if the villi were healed.I started feeling better within days and continue to do so.I have had some pain from costochondritis for the last day or so along with some heartburn issues....but I think that is getting better today.I don't know if the costo and celiac are related are not but it would not surprise me.I know what you mean about needing to know what is wrong.It was driving me nuts!

I feel like a different person now.I was going down hill fast and was getting very depressed.I really attribute my well being to the diet change even though my dx has not been official.My scope scheduled for August may or may not tell the tale....but I can't see going back to gluten at this point.

Good luck

[happygirl]

Which celiac blood tests did you have run?

[ravenwoodglass]

Yes you should be skeptical. Up to 30% or celiacs will show up negative on blood work. If I had relied on blood work I would be dead now. I had countless panels done with negative results but within a short time of eliminating gluten many of my problems were history or at the minimum in remission. Those were not minor issues as you can see by my signature. After you are done with all the testing you desire to do make sure no matter what the results that you give the diet a good strict try for at least a few months.

[leadmeastray88]

  ravenwoodglass said:

Yes you should be skeptical. Up to 30% or celiacs will show up negative on blood work. If I had relied on blood work I would be dead now. I had countless panels done with negative results but within a short time of eliminating gluten many of my problems were history or at the minimum in remission. Those were not minor issues as you can see by my signature. After you are done with all the testing you desire to do make sure no matter what the results that you give the diet a good strict try for at least a few months.

Wow, that is definitely reassuring

I think no matter which way my tests go I am going to try the diet anyway and just see how I feel. Then I'll know. Even if I don't have a proper dx if it makes me feel better I'm willing to do anything at this point. I feel like I'm slowly getting more and more depressed and frustrated because I don't know what's wrong.

Thank you all for your support, it's much appreciated!

[ravenwoodglass]

  leadmeastray88 said:

Wow, that is definitely reassuring

I think no matter which way my tests go I am going to try the diet anyway and just see how I feel. Then I'll know. Even if I don't have a proper dx if it makes me feel better I'm willing to do anything at this point. I feel like I'm slowly getting more and more depressed and frustrated because I don't know what's wrong.

Thank you all for your support, it's much appreciated!

Bear in mind also that gluten for many of us is a neurotoxin, so you may feel a bit more moody when you first stop consuming. This will pass.

Be sure to read as much as you can here, the diet is tricky at first because there are so many things to consider other than just food. When you first go gluten-free it is a good idea to try to go with whole unprocessed foods and do drop dairy in the beginning. It will help speed healing and you can add it back in after you are feeling good again. Many of us will have problems with dairy that go away after we heal but some of us do have a milk protein intolerance also and that can confuse things if we go gluten free but still consume dairy.

[leadmeastray88]

  ravenwoodglass said:

Bear in mind also that gluten for many of us is a neurotoxin, so you may feel a bit more moody when you first stop consuming. This will pass.

Be sure to read as much as you can here, the diet is tricky at first because there are so many things to consider other than just food. When you first go gluten-free it is a good idea to try to go with whole unprocessed foods and do drop dairy in the beginning. It will help speed healing and you can add it back in after you are feeling good again. Many of us will have problems with dairy that go away after we heal but some of us do have a milk protein intolerance also and that can confuse things if we go gluten free but still consume dairy.

That's great advice, I never even considered something like that!

So other than the basic dairy products, what kinds of foods contain milk protein/ have milk derivatives?

[nora-n]

About the milk proteins, bothe me and my daughter do not tolerate traces of milk either.

mostly we make tood from scratch but there are lots of foods that are both gluten-free and milk-free but it takes a lot of reading.

many parents with autistic children have them on gluten-and milk-free diets, as gluten and milk are neurotoxins to autists.

I think they have lits of foods so you do not have to invent the proverbial wheel all over again.

You might find them by searching for Gluten-free Casein-free or gluten sein free or something like that.

I did read Dr. Reichelt's postings on the subject, interesting.

It was the first thing i looked for after I got acomputer, as iI have a sister with some problems.

nora