False Negative?

[bex]

Hi, I'm new to this, so bear with me. I suspected I was celiac, and my GI doctor did a biopsy during a scheduled GI scope to check for celiac. Well, the silia were destroyed, which is what apparently would happen for a celiac, so he sent a blood sample to the lab for a confirmation test (I know, it sounds backwards, but he was already doing the GI scope anyway, that's why he did the biopsy first). He called and left a voicemail and said the blood test was negative so don't worry I don't have celiac. What I'm wondering though, is what else would make my silia be like that? I have some of the symptoms that always show up on the celiac sites: chronic gas, diahrea/constipation fluctuations, chronic fatigue, etc. Is it common to have a false negative? Should I get the blood test re-done? And can anyone recommend a good GI doctor in Kansas City who would perhaps have an idea of what else could be damaging the silia like that? Thanks for your help.

[lovegrov]

OK, so what destroyed the villi and what are you supposed to do about it? You need them and there must be a cause.

What blood tests did he do? Igg can be negative even if you have it and Iga can be negative if you're Iga deficient.

richard

[KaitiUSA]

Your doctor is a dumb butt. If the biopsy showed positive you have it...does not matter what blood work says in that case. Some blood tests are more accurate then others but you obviously have celiac with destroyed villi.

You need a new doctor...sounds like one of the many who knows nothing about celiac.

Now, if the biopsy came back negative then you would need to rely on blood work because a biopsy can't rule celiac out..it can only rule celiac in.

Which blood tests were run on you?

[bex]

I was wondering all that myself! In his voice mail, he was acting all like I should be relieved, and I'm more weirded out because where before I thought, "well, I have celiac, so at least I know what to do about it," now i'm thinking what the heck do I have? And he didn't seem to worried that the villi (sorry, not silia) were damaged. BUT I AM!! It seems to me that if a lot of the problems caused by celiac, like vitamin deficiencies, osteoperosis, etc., are caused by malapsorption, which is caused by damage the the villi, then doesn't it follow that if my villi are damaged, some of those things could also be happening to me? even if it's not technically celiac? Thanks for confirming my suspicion.

[KaitiUSA]

You have celiac. The damage is what is associated with celiac..without the damage it would not be celiac.

Untreated celiac leads to tons of problems including increased chances in cancer, diabeters, osteoprosis, and other life threatening and disabling things...also takes an average of 10 years off of your life. Once you go gluten free though the risks go back to normal.

What you should do is go gluten free and then about 6 months from now have a followup biopsy and see if the damaged is healed. The gluten free diet will prevent further damage and heal damage.

If your villi are damaged there are nutritional deficiencies and malabsorption going on to a point in your body.

Being gluten free is an all or nothing thing though...even accidents as frequent as once a month is just like not following the diet...things like products you put on your face like cosmetics and things like shampoos, soaps, lotions and everything needs to be looked at to make sure it is gluten free.

It gets easier as you go and learn the good things you can have. There is still alot we can have even on the mainstream market. There are good replacements for pretty much everything. This site is a great resource and you will find out all the info you need to know. Feel free to contact me if you need any help.

Your doctor just amazes me...I don't see how damaged villi would be taken so lightly...he needs a celiac lesson.

[dd6444]

i had a blood test done and it showed negative, but my dad wasn't convinced, so he ordered a stool test for me which showed positive.

[Merika]

Bex,

There *are* other things that can cause villi damage. I was just reading about a *rare* reaction to soy or milk that can cause similar damage as celiac. The odds are, though, it's celiac. May I suggest trying the diet for one month and seeing if you notice a difference? If you notice NO change, you're probably not celiac. If you DO notice a change, the diet is helpful then.

Did your doctor suggest what he/you should do next? Because if your villi are damaged, you have a problem (duh).

Merika

[aikiducky]

Would it be possible to let another doctor have a look at your biopsies? I don't know how it works exactly - are there like samples of tissue that someone else could look at and give a second opinion?

Pauliina

[KaitiUSA]

There *are* other things that can cause villi damage. I was just reading about a *rare* reaction to soy or milk that can cause similar damage as celiac.

Those reactions are rare although that can happen where they cause similar damage.

However, with symptoms of celiac and flattened villi it does point to celiac so the best thing to do is go gluten free (make sure 100% because it's an all or nothing thing)then about 6 months from now get a biopsy again to see if the damage has got better or healed. That will tell if it is celiac or not.

[Carriefaith]

Hi, I'm new to this, so bear with me.  I suspected I was celiac, and my GI doctor did a biopsy during a scheduled GI scope to check for celiac.  Well, the silia were destroyed, which is what apparently would happen for a celiac, so he sent a blood sample to the lab for a confirmation test (I know, it sounds backwards, but he was already doing the GI scope anyway, that's why he did the biopsy first).  He called and left a voicemail and said the blood test was negative so don't worry I don't have celiac.  What I'm wondering though, is what else would make my silia be like that? I have some of the symptoms that always show up on the celiac sites: chronic gas, diahrea/constipation fluctuations, chronic fatigue, etc.    Is it common to have a false negative?  Should I get the blood test re-done?  And can anyone recommend a good GI doctor in Kansas City who would perhaps have an idea of what else could be damaging the silia like that?  Thanks for your help.

<{POST_SNAPBACK}>

If you had a blood test that tested for IGA antibodies and it was negative, then you could be deficient in IGA antibodies. Some celiacs are deficient in these antibodies, which could explain the positive biopsy and negative blood test.

[Jenn2005]

My husband also had negative bloodwork and a biopsy that was compatible with sprue. He has a lot of symptoms for celiac or at least gluten intolerance. I am very nervous about this because the doctors are saying its not celiac or gluten intolerance because the blood test are negative, but as mentioned above with a positive biopsy and a good reaction to the diet it seems likely to me its one or the other. This gets very furstrating and scary. His doctor (at a big university hospital in Gainsville Florida) has instructed him to go back on a gluten diet starting yesterday afternoon and he is going to redo the endoscopy on Monday. That is a whole 5 days of ingesting gluten. He has been on the gluten free diet for 7 weeks, I'm pretty sure its not going to show anything with only 5 days of eating gluten. I'm hoping that it will show improvement from the first one and that should help confirm that the diet is helping. Good luck with getting a dx.

Jennifer