I Am Confused After Being Diagnosed With Celiac Disease

[gwynanne4life]

I am 57 years old and was recently diagnosed with Celiac Disease through the Gold Standard biopsy test through Endotscopy.  Following the positive biopsy, i had blood work done, and tested positive for the genetic marker, but negative for antibodies. Six weeks after being diagnosed - I had to swallow the mini-camera to get a view of the small bowel to look for inflammation.  When I went in to get the results yesteday, The doctor said - that overall I had a few small inflammatory spots  which she showed me - possibly about 3 or 4 but otherwise my small intestines appeared to look fine.  She asked me how i was feeling and I told her since being gluten-free the stomach bloating was gone, as was the esophageal spasms and upper abdominal pain - but I had developed some other weird symptoms like tingling in my feet and legs and fatigue.  All of my blood work came back fine for nutrients and rbc and she said maybe it I was lacking in some micronutrient that they cannot test for.  She said if it didn't go away I might need t see a neurologist.  Anyway,  she then told me that I might want to try eating gluten again to see if those symptoms subsided - do a gluten challenge test.  I REALLY do not want to do that - I want to get healed and sealed and move on in this new life style of eating gluten free.  Has anyone gotten frustrated with their GI doctor or had similar symptoms? 

 

[NoGlutenCooties]

I have not had those symptoms, but I'm what's known as an asymptomatic Celiac - meaning I didn't have any symptoms before going fluten-free even though they found a ton of inflammation and the biopsy showed a moderate to severe level of damage.  As for the negative bloodtest for antibodies - that test is notoriously unreliable.  I've seen estimates that a negative test result is only about 70-75% accurate.  Positive test results are closer to 97-98% accurate.  That said, many people seem to report an increase in symptoms, or even the development of new symptoms, when they first go gluten-free - it's all part of the healing process.  There can also be other food sensitivities going on so most will tell you to avoid dairy for awhile and stick to simple, whole foods until you've had a chance to heal.

 

Also, as far as the minimal inflammation - the inflammation tends to come and go.  So you could have no inflammation for one test and then a ton of it 6 months later.

 

If you're feeling better after going gluten-free, to me that's the true test.  Doing a gluten challenge after you've gotten the positive results from a biopsy seems really silly and unnecessary to me - but that's just me.

 

One last thought... make sure you are 100% gluten-free.  No hidden gluten cooties hanging around anywhere.  And absolutely NO cheating.

 

Good luck!

[shadowicewolf]

I am 57 years old and was recently diagnosed with Celiac Disease through the Gold Standard biopsy test through Endotscopy.  Following the positive biopsy, i had blood work done, and tested positive for the genetic marker, but negative for antibodies. Six weeks after being diagnosed - I had to swallow the mini-camera to get a view of the small bowel to look for inflammation.  When I went in to get the results yesteday, The doctor said - that overall I had a few small inflammatory spots  which she showed me - possibly about 3 or 4 but otherwise my small intestines appeared to look fine.  She asked me how i was feeling and I told her since being gluten-free the stomach bloating was gone, as was the esophageal spasms and upper abdominal pain - but I had developed some other weird symptoms like tingling in my feet and legs and fatigue.  All of my blood work came back fine for nutrients and rbc and she said maybe it I was lacking in some micronutrient that they cannot test for.  She said if it didn't go away I might need t see a neurologist.  Anyway,  she then told me that I might want to try eating gluten again to see if those symptoms subsided - do a gluten challenge test.  I REALLY do not want to do that - I want to get healed and sealed and move on in this new life style of eating gluten free.  Has anyone gotten frustrated with their GI doctor or had similar symptoms? 

There is no reason for that gluten challenge. You are already diagnosed with the endoscopy.

 

As for the weird symptoms, you may have an intolerance to another food, such as soy, corn, or dairy. Keep a food diary and write down everything you eat in a day. If you start to see a pattern with the symptoms then you may find your answer.

[nvsmom]

I agree, you're a celiac - don't make yourself ill with a gluten challenge.   Your doctor is not educated in this...

 

There are quite a few people around here who were diagnosed with a biopsy yet had negative blood work, and vice versa. Sometimes you just don't have enough autoantibodies in the blood to register but those autoantibodies they test for are the ones that cause the damage that they saw in the scope and there are not many things that cause celiac like damage.

 

Stay gluten-free and give it a few more months. Perhaps have your thyroid checked - thyroiditis (and diabetes) often accompany celiac disease.  The main nutrients to check are iron, ferritin, calcium, potassium, magnesium, A, D, B12, zinc and copper. Sometimes our adrenals need a boost after being stressed by autoimmune diseases for so long. Perhaps your doctors could check those out too?

 

I hope you are feeling better soon.

[Gemini]

I have not had those symptoms, but I'm what's known as an asymptomatic Celiac - meaning I didn't have any symptoms before going fluten-free even though they found a ton of inflammation and the biopsy showed a moderate to severe level of damage.  As for the negative bloodtest for antibodies - that test is notoriously unreliable.  I've seen estimates that a negative test result is only about 70-75% accurate.  Positive test results are closer to 97-98% accurate.  That said, many people seem to report an increase in symptoms, or even the development of new symptoms, when they first go gluten-free - it's all part of the healing process.  There can also be other food sensitivities going on so most will tell you to avoid dairy for awhile and stick to simple, whole foods until you've had a chance to heal.

 

Also, as far as the minimal inflammation - the inflammation tends to come and go.  So you could have no inflammation for one test and then a ton of it 6 months later.

 

If you're feeling better after going gluten-free, to me that's the true test.  Doing a gluten challenge after you've gotten the positive results from a biopsy seems really silly and unnecessary to me - but that's just me.

 

One last thought... make sure you are 100% gluten-free.  No hidden gluten cooties hanging around anywhere.  And absolutely NO cheating.

 

Good luck!

Actually., the blood tests for Celiac are not notoriously unreliable but they tend to only pick up damage once it has advanced to a more severe stage. Couple that with the fact

that people may be IgA deficient so autoimmune testing may not work for everyone. The biopsy is only as reliable as the doctor performing it and the amount of damage present. As the small intestine has the surface area of a tennis court, if they don't hit the right area of inflammation, the biopsy will be negative even in the presence of Celiac.

 

Having said that, if someone tests positive on either test, or certainly both, they have Celiac Disease. Factor in a dietary trial with positive results and that is a slam dunk. No one should ever have to consume gluten again for any reason if they do not wish to. Not should they doubt their diagnosis because a doctor does. To the OP....please stay gluten free.  Your other symptoms are not weird...they are neurological in nature and should subside over time if you follow a strict gluten-free diet.  They are common to Celiac so do not doubt your self in wanting to stay gluten-free.  Good luck!

[NoGlutenCooties]

This report was from Sept, 2011:

 

According to Dr. Thomas O'Bryan (an expert and lecturer about gluten intolerance), this test records a false negative 7 out of 10 times. These false negatives are due in part to the physician's interpretation as well as the patient's condition at the time of the test. Physicians may interpret the test as negative if the test for intestinal tissue damage (anti tTG and EMA) is negative -- even if the blood test results indicate a positive immune reaction. The intestinal tissue tests will only come back positive if there is severe damage or atrophy to this tissue -- the kind found in end-stage Open Original Shared Link. If there is only partial atrophy, the accuracy of this test goes down to 27-30 percent.

Open Original Shared Link

 

 

Have the tests really gotten astronomically better since then?

[kareng]

Getting our information from reliable sources like Celiac Medical Centers:

Maybe this will be helpful

Open Original Shared Link

Open Original Shared Link

Do you know which blood tests you had? A few people ( about 5%) need a special blood test. Get a copy of the blood work and see what they did.

[IrishHeart]

I do not see any citations in that article posted by NoGlutenCooties, so I am not willing to believe that the chiropractor dr. O'Bryan's estimate is accurate. Not everyone thinks he is a "celiac expert".

 

The article also asserts there is valid testing for gluten sensitivity, which is simply not true. There is no testing for NCGS at this time.

Leading celiac research centers are firm on this stance.

 

anyway that is irrelevant to the OP's questions.

 

Gwynanne,

 

A positive biopsy for celiac means you have celiac, hon.

Stay on your gluten free diet and heal.

 

I have absolutely no idea why someone would tell a confirmed celiac to go back on gluten to see if neurological symptoms will go away. That makes no sense whatsoever!

I had terrible neurological issues before my diagnosis, and it was only through time, healing and absence of gluten that they resolved.

 

 

Jebby (a member on here, who also is a doctor) had peripheral neuropathy occur after being

gluten-free and I will see if I can get her to chime in here to reassure you that hers did resolve in time.

 

Read her article and you can post a question to her .I am sure she would be happy to help.She's a sweetheart.

She is a mom and has a full-time job so be patient if she takes a bit to get back to you.

 

https://www.celiac.com/gluten-free/blog/1038/entry-1883-my-oh-my-peripheral-neuropathy/