False Negative?

[ironic]

I am a 16 year old girl who has had serious stomache problems her whole life. After every single meal my stomache would hurt so bad I was sure I would die, and while it seemed to get better as I got older my parents think it is just because I've learned to deal with the pain. I used to miss a LOT of school - and kids were really mean about it - saying I was faking and such. So finally last year I got a blood test for Celiac disease, and it came back positive. So I went on the diet and felt almost 100% better. Then they had me do an endoscopy which came back negative. So I stopped the diet and got sick again. A few minutes ago my neighbors new wife just came over to borrow and egg, and she mentioned she has Celiac disease. I told her how we thought I had it, but explained how we foud out I didn't. She is a doctor and told me that 1. the blood test is 95% accurate, and 2. that if I had been on the diet the endoscopy would come back negative whether I had it or not.

So - do you think I have it? I'm going to go in for another blood test, but I think regardless I am going to start the diet again. I have pretty much all the symptoms. Lately they thought I had IBS, and I've been on the medication.. but it doesn't help as much as I'd like it too. They also thought I was Lactose intolerent.. but I can eat Ben and Jerrys without a problem.

Any thoughts?

[Guest nini]

you already have your answer. The blood test you already had was sufficiant enough, couple that with positive dietary response and there you have it... I wouldn't bother with any more testing, based on the positive blood test and the positive dietary response that you already had, that is more than enough evidence in my book to say you definitly have this and need to be gluten-free. Good luck with it.

[CarlaB]

Welcome. If your blood test came back positive and you had a positive dietary response, then you felt bad again when you went on the diet, I really see no need for any additional testing. You've got it! Even if you had been eating gluten for the biopsy, it still can have false negatives -- it can only prove you have celiac but cannot rule it out. Also, as far as I know, the blood test is not known for having false positives -- it is known for having false negatives, however.

[rinne]

I think you are very fortunate that your new neighbour has Celiac and is a doctor. I also think you should talk to your parents about seeing a new doctor.

And welcome, this is a great place for questions and remember there are no dumb questions.

[Rachel--24]

Yup...thank goodness for your neighbor stopping by to borrow that egg!

I agree with the others....no need for further testing. Biopsies often give false negatives but having been already on the diet you are almost guaranteed to have a negative test result. You said you felt great on the diet so this means your body was healing and that the diet was working....hence a negative biopsy. The positive bloodwork and your positive response to the diet was enough for a diagnosis.

Get back on the diet and feel better.

[ironic]

Thank you all so much. I know this sounds stupid, but it is a relief. When you know something is wrong- once you find out what it is (even if it means a major life change) you feel better. Fear in the unknown and so on.

[kbtoyssni]

Your neighbor is right - you definitely have it. About the lactose intolerance: you may have a temporary intolerance to lactose while your body is healing. Lactose is digested by the tips of your villi so if they're worn away you'll have trouble digesting it.

Congrats on finally getting a diagnosis! I was also thrilled to get a diagnosis.

[KaitiUSA]

You can have false negatives with blood tests or biopsies

[mommida]

We should get the name of your neighbor, the doctor (who is absolutely correct in what she told you) and refer those who are going for testing in your area.

L.

[ironic]

I just got back from my doctor..

she said that endo. are much more reliable than blood tests, and even if I had been on the diet, if the endo. came back neg. then I don't have it. She also said (in a nicer way) that I shouldn't listen to people on the internet, or neighbors who don't know my case personally. She said the diet doesn't affect the endo.

I trust her, it's just very different from everything I've heard/read. I asked about people who only get blood tests (not endoscopies) and she said that most of them don't really have Celiac disease. So I asked why we all had positive dietary responses, but I don't remember what she said.

But I got a referral to childrens hospital in boston. But now I have to wait to start the diet (again) to see what tests the new dr. is going to want to do. Either way - neg or pos - I'm starting the diet. Cause I think I have it.

[nikki-uk]

she said that endo. are much more reliable than blood tests, and even if I had been on the diet, if the endo. came back neg. then I don't have it. She also said (in a nicer way) that I shouldn't listen to people on the internet, or neighbors who don't know my case personally. She said the diet doesn't affect the endo.

My son recently had an endo last Fri.

The doctor repeatedly asked me if he was still eating gluten.-otherwise the villi (lining of the intestines) will have started to heal-and you could end up with a false negative.

Once you stop eating gluten,the inflammation starts to heal itself.

For you to have another endoscopy you will need to eat gluten for at least 6 weeks prior to the biopsy for the damage to start occuring again,-and for it to be noticable in a biopsy.

You certainately don't have to listen to people on the internet-but facts are facts.You must be eating gluten to get an accurate diagnosis of celiac disease via biopsy.Your doctor is misinformed (sadly alot docs are about celiac disease)

Scroll down and read No2 on this link

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Good Luck

[mythreesuns]

she said that endo. are much more reliable than blood tests, and even if I had been on the diet, if the endo. came back neg. then I don't have it.

I think a lot of us have proven (if only anecdotally) that not only is the biopsy less reliable than the endo, neither are very reliable at all.

Sadly, it seems that your dr is not very well informed about celiac. I agree with everyone else--stay on the diet since you KNOW you feel better on it.

I had a negative blood test and endo, but a positive result from EnteroLab (including the genes!)

[Rikki Tikki]

Welcome Ironic:

I am saddened by your doctor giving you that information. Everything I have read has stated that if you are not eating gluten the intestines will heal and show a negative biopsy.

If you feel better off gluten then stay off it.

[rez]

Welcome Ironic:

I am saddened by your doctor giving you that information. Everything I have read has stated that if you are not eating gluten the intestines will heal and show a negative biopsy.

If you feel better off gluten then stay off it.

Remember, the art of medicine is a practice. I have had two doctors tell me I know more about the disease than they do. My pediatric allergist called me back and said he and his partner were wrong. He thanked me for "teaching the doctors". He claimed the blood test would be positive even if my son had been off gluten for a month. He did some further research and that's when he found out he was mistaken. You have to trust your gut. No pun intended. I think in 20 years people will be more educated on this disease.

[aikiducky]

You only really need to think about it logically for a moment to realize that the doctor is wrong. The whole POINT of the gluten free diet is to allow the intestine to heal again...

Of course if there's a lot of damage it's possible that there's still damage to be found after a while gluten free, but there's no guarantee that would be the case. Also, there's no way to biopsy all of the small intestine, so if the damage is in a place that can't be reached in the endoscopy, the result will be inconclusive. And endo can't prove you don't have celiac, it can only prove you have it, if it turns out to be positive.

Pauliina

[Nancym]

You should listen to your body. Your doctor doesn't have the opportunity to walk around in your body and experience the pain you have and the lack of pain when you change your diet.

Ultimately this comes down to who has control over your body. You, or your doctor?

[ironic]

Thank you guys.

I'm going to talk to my friends and family to decide if I want to have another edoscopy, or if I should just start the diet again.

What do all of you think.

I'm leaning towards just doing the diet, but I think it would also be good to have my med. records to say I have it. So I don't know.

What I really hate is that she basically called me a hypocondriac (I have no idea how to spell that word). I have had to convice so many people that the pain is real, I shouldn't have to convince my doctor too.

[sagemoon]

I was treated with the same dismissiveness as you are by your current doctor. That was in 2000, 2001, 2002, 2003, 2004, and 2005. After years of sickness I was diagnosed with Celiac in January 2006, only after I refused to leave the doctor's office until I was properly tested and then paid for my own gene testing as well. I suffered for 6 years because of Drs. Know-It-All. Doctors are not Gods, they are fallible human beings that are extremely busy and have stubborn streaks just like the rest of us and they HATE to be proven wrong, just like the rest of us. Take this as a lesson in life and move on to the specialist and leave your overwhelmed doctor behind.

[Nancym]

I'm going to talk to my friends and family to decide if I want to have another edoscopy, or if I should just start the diet again.

What do all of you think.

I'm leaning towards just doing the diet, but I think it would also be good to have my med. records to say I have it. So I don't know.

Are your parents supportive of the dietary change? If so, I'd skip the doctor business, especially since you really need to eat a LOT of gluten for 8 weeks or more. I mean, a piece of bread at every meal. And even then, you might have another negative biopsy but you're still gluten sensitive.

There's a lot of doctors who will take positive blood work as a diagnosis. Gee, I was just reading something today... can't find the link now. Oh here it is!

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Positive antibody, negative biopsy

If by positive antibodies you mean either IgA endomysial (EMA), IgA gliadin or IgA tissue transglutaminase, then I�€™d agree, you probably have celiac disease. If it�€™s an IgG gliadin or any reticulin antibody then it is less certain since other conditions will give these reactions.

Biopsy should be interpreted by someone familiar with pathologic findings for celiac disease. Earliest change is just increase in lymphocytes (immune cells) in the tissue all the way up to full-blown villous flattening. Many centers use the �€œMarsh index�€� to �€œscore�€� the pathology findings in presumptive cases of celiac disease. Low grade changes like intraepithelial lymphocytosis or increased crypt mitotic figures may be regarded as normal variants by reading pathologist, especially if they don't know they are looking for Celiac disease.

Ask your GI to get a second opinion on your slides from someone who does GI path.

Strict gluten-free diet should result in decreases in antibody titers over time. EMA (tTG) will go down first, usually negative by 4-6 months. IgA gliadin next then IgG gliadin which may persist for a year.

Another study has shown that patients (who were ultimately diagnosed with celiac disease) with equivocal biopsies when given large "doses" of gluten containing protein over 2 month period will develop the typical changes of villous flattening. This is also known as a "Gluten Challenge".

If presumptive celiac disease then be sure to get the rest of the workup for iron/vitamin deficiency, osteoporosis, etc. Low bone density, e.g., would corroborate the positive antibodies.

Ultimately its the dietary challenge that SHOULD matter. If your symptoms go away when you stop eating gluten, why on earth would any doctor on the face of this planet deny the obvious?

If your parents aren't supportive, is there any chance you could get them to come here and talk to us?