Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

False Negative?

bex

By bex
in Doctors

Recommended Posts

bex Newbie
bex
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

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 Enthusiast
KaitiUSA
Posted

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 Newbie
bex
Posted
  • Author

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 Enthusiast
KaitiUSA
Posted

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 Rookie
dd6444
Posted

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 Contributor
Merika
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

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 Enthusiast
KaitiUSA
Posted
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 Enthusiast
Carriefaith
Posted
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 Contributor
Jenn2005
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748
    AnnaLousGFBakery
    Newest Member
    AnnaLousGFBakery
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.