Negative Test 5 Years Ago

[SBlack]

I have a question regarding the testing too.  I am new to this forum and have not been officially diagnosed as of yet.  I was tested five years ago and everything came back negative but I've continued to get wrose and worse.  Finally went gluten free a couple weeks ago and my symptoms are disappearing like crazy.  I'm no longer sick anymore after I eat, have energy, no bone pain or stiffness, etc...

So my question is - do a lot of people with this disease never have positive results for the testing??  I feel like I get zero support from my doctor if I have a negative test and then I'm left wondering myself how to fix the problem.  Which now I believe I have but is that normal???  do I need to be officially diagnosed??

thank you

[greenbeanie]

Were your previous tests just blood tests, or did you also have an endoscopy/biopsy done too? 

[nvsmom]

Welcome to the board.

 

I have seen that up to 25% have negative blood tests but I think that number is falling now that the new deaminated gliadin peptide tests (DGP IgA & DGP IgG) are around and the antigliadin antibodies (AGA IgA and AGA IgG) tests are used less. I'm not sure about the false neagtive rates in the biopsy but there is a small number of board members who had a negative biopy with positive blood work.

 

It's possible that your test results have changed over time. You could have higher autoantibody levels now or more damage. There is also a chance that you have Non-Celiac Gluten Intolerance/sensivity (NCGI). NCGI is much more common than celiac disease and has the same symptoms; the only difference is that it does not include villi damage.

 

If you decide to be tested for celiac disease, you need to be eating 1-4 servings of gluten (ie. bread slices) per day for 4-12 weeks prior to testing for accurate results. Don't go gluten-free if you going to test for celiac disease.

 

You don't need to be tested for celiac disease to go gluten-free, but most people decide to try testing first to rule out celiac disease, and then if celiac disease is negative they try the gluten-free diet for 3 or more months to determine if NCGI is the cause of the problems.

 

Good luck. I hope you find answers.

[SBlack]

Welcome to the board.

 

I have seen that up to 25% have negative blood tests but I think that number is falling now that the new deaminated gliadin peptide tests (DGP IgA & DGP IgG) are around and the antigliadin antibodies (AGA IgA and AGA IgG) tests are used less. I'm not sure about the false neagtive rates in the biopsy but there is a small number of board members who had a negative biopy with positive blood work.

 

It's possible that your test results have changed over time. You could have higher autoantibody levels now or more damage. There is also a chance that you have Non-Celiac Gluten Intolerance/sensivity (NCGI). NCGI is much more common than celiac disease and has the same symptoms; the only difference is that it does not include villi damage.

 

If you decide to be tested for celiac disease, you need to be eating 1-4 servings of gluten (ie. bread slices) per day for 4-12 weeks prior to testing for accurate results. Don't go gluten-free if you going to test for celiac disease.

 

You don't need to be tested for celiac disease to go gluten-free, but most people decide to try testing first to rule out celiac disease, and then if celiac disease is negative they try the gluten-free diet for 3 or more months to determine if NCGI is the cause of the problems.

 

Good luck. I hope you find answers.

Thank you very much for your answers!!  I think my blood test was negative, 5 years ago - not sure if what you mention has been around that long as far as the testing goes?  You said "new"?  And my biopsy was negative.  However - I had been eating mostly gluten free for a couple of weeks before my tests - not realizing that I shouldn't do that.  It was a huge mess.  Anyway  ....  the reason I think it could be celiacs is because about 7 or 8 months before I got tested 5 years ago, I had a severe Vitamin D deficiency.  It was very odd - I was an otherwise seemingly healthy 30 year old and I had tremendous bone pain, joint pain and the fatigue, weakness and loss of energy was absolutely awful.  It took the doctors a few months to realize that is was a deficiency, but that it was severe.  It took two rounds of the high doses of Vit. D (50,000 IU's/week) for it to work.  My numbers fell again after the first round.  But ironically, and I had never put this together until very recently...., I had started eating a very strict low carb diet during the second round and started to get better and eventually did.  The endocrinologist that treated me tested me for everything she could think of because she said that doesn't just happen - that it's either an autoimmune disease, chronic illness, or cancer.  I also have had a type of seizure my whole life and I know it is linked to gluten because I have tested it.  I have had them all my life and have just realized wheat gluten as a trigger last year.  Would that be considered celiacs or still non-celiacs??  I go back to my doctor next week for my follow up.  Interestingly enough....my youngest sister has had similar problems and her blood tests just recently were positive for celiacs but her biopsy was negative.  thoughts??  THANK YOU

[SBlack]

Were your previous tests just blood tests, or did you also have an endoscopy/biopsy done too? 

I had both and both were negative - however, I had been eating gluten free for 2 - 3 weeks before my tests.  I didn't know not to do that.  It was a huge mess....

[nvsmom]

Vit D deficiency can indicate celiac disease or NCGI, and then there are some celiacs (like me) who don't have deficiencies. Going gluten-free often helps those with gluten caused deficiencies but it takes a long time (usually) for improvements to stick.

 

I think you might as well request retesting for celiac disease. You have symptoms and a family history so that makes celiac disease more likely.  The full celiac panel is:

• DGP IgA and DGP IgG (these are newer tests, and I don't think they were around 5 years ago)
• tTG IgA and tTG IgG
• total serum IgA
• EMA IgA
• AGA IgA and AGA IgG (older and less reliable tests)

It is best to get as many tests run as possible because none are 100% sensitive (meaning none catch 100% of all celaic cases). This has more info, and might be good to show doctors when requesting tests; Open Original Shared Link

 

The endoscopic biopsy can miss the damaged parts of the gut - that has happened to a few board members here. It's not surprising considering the small intestine has the surface area of a tennis court. Those who have had biopsies advise that 6 or more samples be taken so damage is more likely to be caught (it is often not visible to the eye).

 

You might want your other nutrient levels checked too. Celiacs are often low in D, B's, potassium, calcium, iron, and ferritin... I think I'm forgetting some...  Also, maybe get your thyroid checked as that controls metabolism and energy, and it can affect some nutrient levels too. You might want to have a few thyroid tests done:

TSH - should be near a 1

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - should be low

 

Even if the tests come back negative, you might want to go on the gluten-free diet for a few months to see if it helps. I recommend 6 months as some symptoms, like pain, take longer to go away. NCGI occurs in at least 1/20 people (low estimate) and it could account for your symptoms - the symptoms of NCGI are every bit as bad as those for celiac disease.

 

Good luck with your appointment! 

[SBlack]

Vit D deficiency can indicate celiac disease or NCGI, and then there are some celiacs (like me) who don't have deficiencies. Going gluten-free often helps those with gluten caused deficiencies but it takes a long time (usually) for improvements to stick.

 

I think you might as well request retesting for celiac disease. You have symptoms and a family history so that makes celiac disease more likely.  The full celiac panel is:

• DGP IgA and DGP IgG (these are newer tests, and I don't think they were around 5 years ago)
• tTG IgA and tTG IgG
• total serum IgA
• EMA IgA
• AGA IgA and AGA IgG (older and less reliable tests)

It is best to get as many tests run as possible because none are 100% sensitive (meaning none catch 100% of all celaic cases). This has more info, and might be good to show doctors when requesting tests; Open Original Shared Link

 

The endoscopic biopsy can miss the damaged parts of the gut - that has happened to a few board members here. It's not surprising considering the small intestine has the surface area of a tennis court. Those who have had biopsies advise that 6 or more samples be taken so damage is more likely to be caught (it is often not visible to the eye).

 

You might want your other nutrient levels checked too. Celiacs are often low in D, B's, potassium, calcium, iron, and ferritin... I think I'm forgetting some...  Also, maybe get your thyroid checked as that controls metabolism and energy, and it can affect some nutrient levels too. You might want to have a few thyroid tests done:

TSH - should be near a 1

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - should be low

 

Even if the tests come back negative, you might want to go on the gluten-free diet for a few months to see if it helps. I recommend 6 months as some symptoms, like pain, take longer to go away. NCGI occurs in at least 1/20 people (low estimate) and it could account for your symptoms - the symptoms of NCGI are every bit as bad as those for celiac disease.

 

Good luck with your appointment! 

Oh wow - thank you so much!!  That is interesting - I didn't know that NCGI could also cause vitamin deficiencies and basically all the same symptoms.  I have been gluten free for two weeks and have felt MUCH better.  most all of my symptoms have gone away.  I did ingest gluten twice and got very very sick.  This last time I broke out in a  lot of ulcers on my tongue for almost two days.  It was just awful.  I have my follow up appointment next week ....  would I have to start eating gluten again though to be tested??  I really really don't want to do that cause I'm feeling so much better.  Would just eliminating gluten help 100% if I have celiacs or NCGI?  Or does there have to be a specific diagnosis.  I just don't want to go through testing if I don't have to, MOST especially if I have to eat gluten again.  do you happen to know ?  Thank you so much!!

[nvsmom]

There are quite a few health problems that have a link to low vit D: hypothyroidism and the rheumatic diseases are often linked to low D. NCGI can cause a lot of inflammation and it is thought that that is what can lead to deficiencies. NCGI is newly recognized though so not a lot is known for certain.

If you want to get tested for celiac, you will have to be eating gluten. The guidelines range from 1-4 slices of bread per day for 4 to 12 weeks. If you have been off gluten a while, you will need to resume eating gluten for a few weeks prior to testing; the longer you have been gluten-free, the longer of a gluten challenge you'll need.

Many doctors seem reluctant to diagnose someone as NCGI. I don't know much about that process (I ad a celiac disease diagnosis). Perhaps someone else will answer that or you could start another thread on that topic.

Good luck!

[SBlack]

There are quite a few health problems that have a link to low vit D: hypothyroidism and the rheumatic diseases are often linked to low D. NCGI can cause a lot of inflammation and it is thought that that is what can lead to deficiencies. NCGI is newly recognized though so not a lot is known for certain.

If you want to get tested for celiac, you will have to be eating gluten. The guidelines range from 1-4 slices of bread per day for 4 to 12 weeks. If you have been off gluten a while, you will need to resume eating gluten for a few weeks prior to testing; the longer you have been gluten-free, the longer of a gluten challenge you'll need.

Many doctors seem reluctant to diagnose someone as NCGI. I don't know much about that process (I ad a celiac disease diagnosis). Perhaps someone else will answer that or you could start another thread on that topic.

Good luck!

Thank you very much!  I did have my thyroid checked recently and it was normal, as was some other random things.  I will talk more to my doctor about the NCGI.  Is there a particular specialist I should see regarding this?  I supposed my PCP will be able to point me in the right direction.  Thank you for all of your help!  I wish it was a little more cut and dry....

[nvsmom]

Thank you very much!  I did have my thyroid checked recently and it was normal, as was some other random things.  I will talk more to my doctor about the NCGI.  Is there a particular specialist I should see regarding this?  I supposed my PCP will be able to point me in the right direction.  Thank you for all of your help!  I wish it was a little more cut and dry....

I don't know if a GI specialist would help you with NCGI or not because NCGI does not damage the gut like celiac does. I do not think there is much doctors can do for NCGI except check your nutrient levels for you and make sure your other organs are working well in spite of the inflammation (like pancreas) ... if you are having symptoms, not many doctors will check that if they see no reason for it.

 

If you are going to do the celiac tests, a PCP or GI specialist can order those.

 

A dietician could be helpful when you start the diet. I myself skipped the dietician and just read lots of books on eating gluten-free. There are many good books on the diet now... that's the plus side of having such a "trendy" disease.  LOL