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Negative Tests.. But All The Symptoms?

lmc22

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lmc22 Newbie
lmc22
Posted

I'm wondering if it's possible to have a negative blood test and a negative biopsy, and still have Celiac..?

I havent officially got my biopsy results back but he said everything else looked normal on the camera...

I have very bad luck with medical tests so I'm alittle paranoid, as I've heard Celiac testing can be somewhat unreliable.

So is a negative blood test and a negative biopsy possible in someone who has Celiac disease? If so, are there any other ways of proving Celiac? I have TONS of symptoms of Celiac disease so I'm about 99% sure I have it (also someone in my family who is believed to have died from undiagnosed Celiac)

Long story short, I'm scared :( so any answers to my questions would help ease my mind

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GottaSki Mentor
GottaSki
Posted

Yes, it is possible to have Celiac Disease with negative blood work and endoscopic biopsy results. It does become more difficult to obtain an "official" diagnosis.

Make sure you request written or electronic copies of ALL of your medical tests.

It is unfortunate that not all Gasteroenterologists have proper training or experience with Celiac testing. Should you have questions about your testing, feel free to post them here...lots of members can help you interpret them.

Now, it is possible that you have Non-Celiac Gluten Intolerance - NCGI can cause very serious symptoms that are quite similar to Celiac Disease and the research into this side of Gluten Sensitivity is still very new - sadly even less understood by the medical community than Celiac Disease.

Oh...forgot to ask...had you removed gluten either partially or completely prior to any blood tests?

Regardless of the diagnosis - since your biopsies have been taken - it is time to remove ALL gluten for at least three months (six would be better) as elimination is the only test for NCGI and often the best test for Celiac Disease.

Hang in there :)

lmc22 Newbie
lmc22
Posted
  • Author

Yes, it is possible to have Celiac Disease with negative blood work and endoscopic biopsy results. It does become more difficult to obtain an "official" diagnosis.

Make sure you request written or electronic copies of ALL of your medical tests.

It is unfortunate that not all Gasteroenterologists have proper training or experience with Celiac testing. Should you have questions about your testing, feel free to post them here...lots of members can help you interpret them.

Now, it is possible that you have Non-Celiac Gluten Intolerance - NCGI can cause very serious symptoms that are quite similar to Celiac Disease and the research into this side of Gluten Sensitivity is still very new - sadly even less understood by the medical community than Celiac Disease.

Oh...forgot to ask...had you removed gluten either partially or completely prior to any blood tests?

Regardless of the diagnosis - since your biopsies have been taken - it is time to remove ALL gluten for at least three months (six would be better) as elimination is the only test for NCGI and often the best test for Celiac Disease.

Hang in there :)

I have yet to go on a gluten free diet, so yes before I was tested I had gluten in my system for some time. Another question I have is this, does non celiac gluten problems have vitamin deficiency, anemia, and neurological symptoms tied to it? I have a hard time understanding what makes the two different other than the damage to the Villi.

GottaSki Mentor
GottaSki
Posted

Another question I have is this, does non celiac gluten problems have vitamin deficiency, anemia, and neurological symptoms tied to it? I have a hard time understanding what makes to two different other than the damage to the Villi.

Great question and one I am not confident in answering - so I'll leave it for others to chime in.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I have recently self diagnosed, partly with the help of information here.

I was wheat free for years and only lasted 3 weeks on a gluten challenge. I wonder if you were gluten light before testing?

It is very hard with negative results to work out if it is celiac or non celiac gluten intolerance, as far as I can work out.

For myself, I know a gluten-free diet (with limited processed food) is making a world of difference. I am calling myself celiac, mainly because it seems to be taken more seriously. And I dont cheat, to make sure others take me seriously.

I am now working on getting annual vitamin etc testing as I am low normal on several celiac classics and want to monitor. I am also trying to get my kids tested regularly because of the genetic component of celiac.

If you do decide to self diagnose you will be in great company here, and it is gluten-free either way.

Good luck with the journey :)

SMDBill Apprentice
SMDBill
Posted

I have yet to go on a gluten free diet, so yes before I was tested I had gluten in my system for some time. Another question I have is this, does non celiac gluten problems have vitamin deficiency, anemia, and neurological symptoms tied to it? I have a hard time understanding what makes the two different other than the damage to the Villi.

I don't believe gluten intolerance leads to the vitamin deficiency and anemia often suffered by celiacs. Although the pain and suffering from ingestion seem to be similar in both, the damage done in celiacs within the intestines, and specifically to the intestinal wall, seems to be what sets them apart. However, leaky gut is still a symptom of intolerance so to me that suggests some degree of damage is still done even in those who are intolerant so it's a bit muddied when I read about them and see comparisons.

I self diagnosed as celiac and not intolerant because my issues are muscular, I had mild DH on my feet, my heart racing stopped and my migraines and headaches disappeared, along with healed skin and other seemingly odd symptoms. I don't believe intolerance would lead to the severity of symptoms I was suffering. But, I'm in the same boat you are. I'm getting tested officially Monday, but I'm already gluten free so I suspect the tests will be negative. I don't mind, mainly because gluten-free was the answer and when I got glutened I suffered badly. My main goal is to find out what I am deficient in and work toward getting all my levels where they should be and I'll be gluten-free forever.

lmc22 Newbie
lmc22
Posted
  • Author

I'm anemic even on supplements and I have low vitamin D levels even though I get plenty of sun :/

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megsybeth Enthusiast
megsybeth
Posted

I just feel like these tests have to improve. I had to keep my four year old on gluten in order to get his endoscopy and it's just barbaric. It's like if a doctor tells you, "I think there might be broken glass in your cereal. But don't stop eating it because I have to wait and see if your stomach gets cut up...Oh, and I'm really busy so keep eating the broken glass for a month". My older son and I were just diagnosed and I don't want to give my baby gluten at all. I just hope a better test comes soon.

gatita Enthusiast
gatita
Posted

I just feel like these tests have to improve. I had to keep my four year old on gluten in order to get his endoscopy and it's just barbaric. It's like if a doctor tells you, "I think there might be broken glass in your cereal. But don't stop eating it because I have to wait and see if your stomach gets cut up...Oh, and I'm really busy so keep eating the broken glass for a month". My older son and I were just diagnosed and I don't want to give my baby gluten at all. I just hope a better test comes soon.

Wow! Good analogy... sad and true...

1desperateladysaved Proficient
1desperateladysaved
Posted

The villi in the intestines which sustain damage in celiac are what absorbs the nutrients for one's whole body. When these do not function normally one is bound to suffer nutrient deficiencies. Vitamins B, D, A, and K are often low. Many are low in magnesium and potassium. I don't know all of them that are often deficient. My guess is if there is alot of damage that there will be trouble with nearly all nutrients including sugar and water.

My supplements have so far saved my lfe. I believe that supplements are vital to recovery. Find some that are really easy to assimulate. Sometimes I don't think my body was getting anything from food, but the suppliment were getting in and causing improvement.

Diana

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