Biopsy Positive - Blood Tests Negative

[Scatabrain]

Hello All! This is my first post. I have read a lot of your posts. What a great supportive community!

I have had several relatively minor GI complaints over the last 10 years and migraines. The problems became a bit more aggravating over the past year but I don't have any where near the degree of problems that I read on these boards - I feel for you all.

I had several minor complaints - just enough that he did a Colo and Endo. During the Endo they did a biopsy that the doc said suggests Celiac. My recent blood test was negative. They did another blood test after the Colo which also came back negative for Celiac and H-Pylori. The Doc said I could now start the gluten-free diet.

He hasn't provided the #s yet or a more detailed explanation but has promised to explain at my next visit in 2 weeks. I will have a lot of questions!!!

Any insights or suggested questions that I should ask the Doc is greatly appreciated!

I am doing my reading and doing well on the diet.

Cheers,

M

[psawyer]

False negatives are relatively common. If the biopsy is positive, then I would consider that a defintive diagnosis of celiac disease.

[cassP]

sounds like you have a nice doc, and not a dismissive one.

i would suggest you ask for a paper copy of your tests. at least all your blood tests.

you might even call your doc's office and request copies mailed to you, so you can study it before your visit.

i did this- and by the time i saw my Gi this week- i knew everything about my tests- and had stuff highlighted.

it's good to be prepared, cause you always forget questions when you see the doc.

it was good that i did this- because on a prior visit, my Gi had not even noticed that i was Iga deficient or that my PCP had ran the Edomysial Antibody tests...

he looked at my EMA and was like- "oh INTERESTING"....

and then looking at my Iga, he was like- OHHHH that's why your Ttg was inconclusive...

it's good to have your own test results in your own file- and learn about it- cause knowledge is power & motivation.

and yes, of course, the positive biopsy is enough. go on the diet and get healthy

[Scatabrain]

Thanks to you both for the quick replies. The Doc is very busy but very responsive. I am very happy with him.

That's great advice about asking for the blood tests before hand. I believe I can do that through the provider's website fairly easily.

My symptoms are not too severe (except the migraines which are getting worse) so I am worried that relying on how I feel on the diet as part of the evidence of the disease. I don't know enough about the biopsy procedure to understand how specific the results are to Celiac vs. others - IBDs etc.

My top questions for the Doc are:

• How specific is the biopsy to Celiac?
  
• How much damage has been done - how extensive, how much flattening etc?
  
• Does the amount of damage suggest how long I have had it? The have had symptoms for 10+ years.
  
• What blood tests were done? How are the being interpreted etc.
  
• Do I need to add tests that are not already part of my normal GP yearly visit to look for secondary problems?
  
• Since my symptoms aren't nearly as severe as others I have read about and my blood tests have come back negative twice, how will I know if the diet is having a positive / or no effect over time?
  
• Do I need to have my children tested? Suggest to siblings and parents? My Dad and Sister have as many and more gastric complaints then I do. My children are very young. I would love to prevent future problems for the kids if I can. My instinct is to be very aggressive getting the kids tested.
  

Cheers!!!!

[Skylark]

Thanks for the kind words about some of the awful GI stuff we've dealt with. I'm glad your symptoms are less severe, although migraines are no fun at all!

The specificity of the biopsy depends on the degree of damage. Thing is, it sounds like your doctor is in the process of ruling out other things that can cause an abnormal biopsy like H. pylori.

It's quite possible the gluten-free diet will help with your migraines. It's pretty amazing all the different health problems we've seen resolve with the diet around here.

[Scatabrain]

Thanks Skylark for the suggestion. I am told that blood test details are in the mail!

[Scatabrain]

Hello All!

Since my last post my doc has changed his opinion and told me that he believes that I do not have Celiac. We did 2 blood tests and both came back negative. He attributes the damage seen during biopsy to overuse of advil. I asked for a second opinion on the biopsy and the 2nd doc agreed. It took some time for me to adjust to the change but after a week I returned to a non gluten-free diet. Finally adjusted to it and liked the free diet again.

While I was waiting for the second opinion I had ordered a test from enterolab. It just came back. It says positive for gluten and soy intolerance and strongly suggests I go in a gluten-free diet or get sick.

At the moment I am gluten-free again.

Does anyone have any knowledge of false positives from enterolab?

What us everyone's opinion of me going back to my gi doc with the test results?

I would sure like to know mire about enterolab before I approach him.

Without the docs diagnosis I am unsure of what to do longterm.

I want to be on the safe side but I am not keen on a strict diet if I don't have to.

With the diagnosis it was much easier to make the gluten-free switch.

My gut tells me that I have to get a pros opinion of the results.

But if the doc disregards this as outside his methods should I trust his opinion or find another doc.

On one level I feel like I am that person that searches for a doc that will agree with an expected diagnosis.

Really I know that you have to be informed and be your own advocate.

So I struggle. gluten-free for now. Contacting the docs office in the morning.

Thanks in advance for your advice and opinions.

M

[mushroom]

The first question to ask in all of this is how did you feel on the gluten free diet, and how have you felt going back off it?? If you were gluten free for two months and did not notice any difference in how you felt, then you are probably not gluten intolerant. So now, based on the Enterolab test you are gluten free again. Any difference??? You had a couple of negative blood tests while still eating gluten. These in themselves do not mean you do not have a gluten intolerance because they are specifically testing for celiac disease, and if you are non-celiac gluten intolerant they will be negative. But the important question is how this testing came about in the first place - what are your symptoms now, what were they then, are they any different? Because the ultimate test of gluten intolerance is how you feel when you are not eating gluten. Give us these answers and we might be able to make some suggestions/provide some advice. I guess, specifically, info about the migraines and any other possible neuro symptoms, since you don't seem to be a GI kind of person, and therefore not as likely to test positive for celiac.

[Scatabrain]

Thanks for your thoughtful reply. Before I was gluten-free the first time I was getting 2 migraines a week. They were fairly intense. I have had off and on D all my life. I just got used to it. I have found over the past weeks that Avoiding dairy and soy has seemed to help in that regard. Gluten seems to have no effect one way or the other on D. The day I went gluten-free I stopped getting migraines entirely.

When I went off the diet I only had 2 in 6 weeks or so. I believe my migraines are triggered by food and stress. When I thought I had celiac it is interesting that for that month I most certainly had a new area of life to focus on instead of my normal stresses and a dramatic change in diet. Eating gluten-free certainly changes a lot about you diet besides gluten. I am fairly confident that my triggers are caffeine and large quantities of certain chocolate such as a big cup of home made cocoa. Gluten itself itself does not bring on a migraine. In other words I can ear plent of bread or cake and get no migraine in the next couple of days.

Since my main concern is that I have one of the 2 needed genes (the less common one) and have some minor damage found in biopsy (Lthough the doc says it's not celiac based on blood test and that gluten doesn't cause gi symptoms) that I could in the future be found to be celiac. With the new potential evidence from enterolab I am concerned that either the enteroloab is a false positive or that it is real and my doc will disregard it due to lack of supporting pear reviews and studies to show actual abilities.

Like many others in the forums here I am now left confused by the enterolab due to the lack of scientific openness to their process. I don't want to put me and my family through a gluten-free lifestyle if I don't have to and I don't want to ignore early signs of future serious illness. .

[Scatabrain]

I had an opportunity to send a communication to my doc about another matter and included the results of the enterolab as well well see. I highly doubt he is going to give it credence but insteD repeat what he has said before - if I am not clinically celiac I may still be gluten intolerant and if I want I could eat be gluten-free by my choice. I don't fully understand the enterolab results. They are saying that I am getting an immune response. I understand that doesn't mean that it is celiac. What are the other possible types of immune responses? Do they range in severity? I have been checked for ulcers and UC and they have ruled out chrons.

Being gluten intolerant on it's own seems pretty vague.

Thanks all for your opinions.

[Takala]

Are you looking for an excuse to avoid the gluten free diet ?

The criteria of an "official" diagnosis is a positive blood test and biopsy. Without both, some doctors will not officially bestow the Official Seal of Approval

[Scatabrain]

Thanks for the extensive thoughtful response. To answer your question about gene test:

I had it done by my GI doc already and didn't want to pay money for Enterolab for it

- Celiac Risk Genes Detected: Category #3, DQ8 heterozygous, Increased Risk 2x, Relative Risk Moderate.

I know that this doesn't tell you if you have it or not just if you have the genes that are common to those that do.

My problem with the gluten-free diet is 2 fold:

- it would be accurate to say that my change in diet had an effect on my migraines.

- it would be a total guess to attribute it to Gluten - i have more work to do to figure this out, but as of now I suspect caffeine (which I avoid) and some forms of chocolate (which I can usually have small quantities of with no problem). And it also seems that on days that I don't eat enough (if I work through the day without getting up for instance) or have an increased amount of stress.

- the biopsy showed damage which the doctor attributes to Advil because he had to explain the damage in combination to the 2 negative blood tests. He only originally told me I had it because the blood work hadn't come back yet.

- the blood work is in contradiction to the enterolab results.

I don't feel any different on a gluten-free diet and I definitely don't get sick at all eating wheat. I have met a lot of people in the last couple of months with Celiac and they explain their GI symptoms as obvious when eating gluten.

The D seems to be caused by dairy and soy - both of which I now avoid - or use lactaid tablets if I can't.

So I have minimized the migraines through diet (for the most part) and solved the D with diet.

My sole concern is future sickness for Celiac that may be present even though the doc doesn't currently think so.

I will never look back going gluten-free with a medical diagnosis but yes it is a huge deal to be gluten-free just to be safe. Being properly gluten-free is all or nothing - as you all know - so for me It is a big inconvenience to my families cooking/eating/dining out and finances. So getting the diagnosis right is a huge deal. I'm not trying to get out of the diagnosis. I just want all factors considered by my doc including the enterolab results - but the jury is out on it's validity - at least that's how im assuming my doc will see it.

Part of me thinks that I should be doing a sort of gluten challenge and then get a biopsy in 6 months. If my doc is right and since I haven't touched advil for last 3 months + an additional 6 then it should come back with no damage to my intestines.

Anyway, I am listening to the advice here but still left confused and frustrated by the enterolab results.

Now I see first hand why docs frown on people that do their own medical testing outside the system and how that can lead to worry and possible more un-needed testing. You always here the urban legend about how a body scan found a certain this or that and it saved the person's life.

I am just trying to be my own advocate and trying to get the best care for myself. It isn't easy!

Thanks all,

M

[Scatabrain]

Here is enterolab results:

Gluten Sensitivity Stool Test

Fecal Anti-gliadin IgA 28 Units (Normal Range is less than 10 Units)

Soy Sensitivity Stool Test

Fecal Anti-soy IgA 14 Units (Normal Range is less than 10 Units)

[Takala]

1 √. positive biopsy, 2√ positive enterolab, 3 √symptoms including migraines and on and off D, and √4. Doctor initially said you should try a gluten free diet, 5√ now you say you've got at least one copy of a gene which predisposes you to celiac, as "DQ8 heterozygous, Increased Risk 2x, Relative Risk Moderate"

https://www.celiac.com/articles/21628/1/Celiac-Disease-Genetics/Page1.html

Celiac disease and gluten intolerance is known to cause lactose intolerance, because it damages the intestinal lining. I have read enough here on this and other sites that soy intolerance is also a frequent side effect.

You haven't explained why the enterolab results are supposed to be "wrong," when they are, in fact, validating the other information leading to a conclusion that it could very likely be gluten intolerance or celiac, that when the doctor blows off the negative blood test, that may not be proving you don't have it. You still seem to want to get out of adhering to a gluten free diet, by your description inconvenient and expensive, because a gastro doc told you a blood test was negative (2x) when all other things say a gluten free diet may be the way to go.

Just my opinion.

[Dixiebell]

You have some minor damage found in biopsy. Was it villi damage? Do you have a copy of your results? If not you should get one. Did your Dr. say why he/she thought you had damage?

"The doc says it's not celiac based on blood test and that gluten doesn't cause gi symptoms"

Some people have negative blood tests and a positive biopsy or positive blood tests and negative biopsy. The blood tests are only about 80% accurate.

Gluten does cause gi symptoms in a lot of people, some have no gi symptoms at all but they have other symptoms associated with celiac.

There are many more genes associated with celiac than the two that are talked about.

[Scatabrain]

Thanks for the input.

I think I have pushed the limits with the Doc on asking questions. About the only thing I could do now is just request a copy of all of my detail records. I have no further details on the biopsy.

Clarification on diagnosis: initially, after seeing the biopsy, he ordered a second blood test and asked me to start the gluten-free diet. When the blood tests came back and after a second opinion on the biopsy he has said I do not have Celiac. I sent the recent enterolab results to the doc and he maintains that I do not have Celiac based on his tests, has no opinion on the enterolab results and suggests I see an allergist or a practitioner of naturopathic medication. This response was not unexpected and therefore in itself is no upsetting.

But I am left not unsure of what to do next.

- find another GI doc?

- contact an allergist?

- find a practitioner of naturopathic medication?

- be cautious despite docs diagnosis eat gluten-free, lactose and soy free?

- go back to a non gluten-free diet and watch for signs of trouble?

Thanks everyone for your input.