Negative Blood Tests - Can I Still Have Celiac Disease?

[sadsickgirl]

Hi I came across this forum early last year and was in despair because I thought my body was falling apart and had suspicions that I may have celiac disease. 

 

More than a year on I feel my list of ailments is worse than ever.

 

- I have a feeling of nauseousness and anxiety in the pit of my stomach which is completely unrelated to mood.

 

- I have random short bursts of pain in my stomach

 

- My hair is falling out in clumps and has become so thin

 

- I have joint pain/ stiffness that feels like arthritis in my elbows, knees, and fingers

 

- I have very painful upper back pain in between my shoulder blades

 

- My sleeping is constantly screwed up, I'm either massively over sleeping or I'm not able to sleep at all

 

- I have bad acne

 

- I have a long history of severe depression

 

- I also have an old (8+ years)  undiagnosed sports injury above my left hip that has stopped me from participating in any sport.

 

Sorry to bore you all with my complaints but I'm at my wits end. I'm youngish (23) and I can't keep living like this - it's ridiculous. I have been tested by a couple of GP's for celiac and each time my blood tests have come back normal. I want to know whether anyone has been in the position of receiving a negative blood test and a positive biopsy, or other confirmation of celiac disease?

 

I asked my GP today whether there is any chance of someone receiving negative blood work for celiac, but testing positive in the endoscopy? She said no, she has never experienced this. Please share your stories I'd be interested to hear if she is wrong. 

 

Also given my symptoms list is celiac a real possibility, no doctor seems to think so, but I'm just not sure. 

[frieze]

Your doc said she hasn't experienced it, but it does occur.  doesn't mean she is wrong because she couched her answer very carefully.  Make sure you have had the complete celiac blood testing,, not just screening tests.  Then, if they come back negative, and you can't get a doc to do an endo. Try the gluten free diet for 3 months and see how it goes.

[Cara in Boston]

You may have been tested for Celiac, but not given the full panel of blood tests.  When my son and I were diagnosed, I told my siblings to get tested (they are all in different states.)  Of the 5 people tested, not one got the full panel.  They were all given just the IgA tests and they were all negative.  In my son's case, all his IgA tests were negative as well, it was his IgG tests that alerted us to the problem.  Try to get your actual test results so you can see which tests they ran.

 

Cara

[nvsmom]

There are a fair number of people around here diagnosed with a biopsy only. It's not that uncommon... If the blood tests are so accurate, why do doctors still bother with "gold standard" biopsy? KWIM?

 

Your symptoms are very similar to mine... My first arthritis like pain hit in my early twnties too. It's scarey. (hug)

 

If you do end up with a negative biopsy, or the doctors won't give you one, or all blood tests are negative, please consider trying the gluten-free diet for 3-6 months (some symptoms like joint pain take months to go away). You might have NCGI (non-celiac gluten intolerance) which has all the same symptoms minus the villi blunting, and is much more common than celiac disease. Treatment is the same: 100% gluten-free diet for life.

 

Best wishes

[Kamma]

You can have what is termed 'gluten sensitivity' in which you have identical symptoms as celiac but the current testing will not capture it.  They believe the innate immune system is responsible and not adaptive immune system (which is what is coming into play with celiac).  They are currently trying to develop a test for it.

 

The treatment for gluten sensitivity is the same as for celiac:  no gluten.

 

You can read more here:  Open Original Shared Link

[Takala]

Yes, it is possible to have negative blood tests and confirmation by other means that one is celiac, or at least severely gluten intolerant. Two examples I can think of, besides the positive biopsy of the small intestine, are a positive skin biopsy for DH rash, or a scan in another part of the body showing brain lesions, aka "bright spots."   But, you also could be just "gluten intolerant," which is a reaction to gluten, but it never can be confirmed by the usual tests they currently use to give the "official" diagnosis.   Obviously you have something going on besides "depression," (which is another symptom, btw)  because your hair is falling out, you have acne,  and your joints are bothering you at such a young age.  Do you have cystic ovaries ?  That is another symptom of celiac/gluten intolerance and can play havoc with pain.  Also, celiac/gluten intolerance can cause auto immune thyroid disease, and THAT can cause chronic tendinitis, which would explain your "unexplained" sports injury.  The tests for thyroid are frequently done incompletely, just checking the TSH, and not as a full panel which must include the antibodies, otherwise, it can miss this:  the thyroid, as it starts having problems, pumps out more levels of hormones to make your levels swing high and low, up and down, hence the doctors will say "nothing wrong."  It is the equivalent of saying there's nothing wrong with your automotive fuel system because your gas gauge is showing a full tank all the time, while you have a leak in your tank. 

 

Other things that can cause depression (which doctors are loathe to admit to) are certain prescription and otc drugs that they are treating you with for other conditions, such as birth control pills or the artificial progestins, steroids for inflammation or asthma, and NSAIDS anti inflammatories  such as used for arthritis, such as large doses of ibuprofen, naproxen, etc.   Combine this with a low functioning thyroid and a state of chronic under nutrition, (sometimes caused by celiac or gluten intolerance) and it can be a real mess to come up out of, but it is possible. 

 

Try this:  skip the gluten for a week, and see if your face clears up.  Then you will know if you are on the right track.  

[sadsickgirl]

Hi everyone thank you for your replies. If anyone would care to look over my blood test results to see if the complete testing has been done I'd really appreciate it.

 

Original coeliac disease serology:

 

Gliadin IgG  3 Units (<20)

 

Total IgA      2.63 g/L (0.69-3.09)

 

Transglutaminase IgA Ab <4 U/mL (< 4)

 

 

More recent coeliac disease serology:

 

IgA 2.55 g/L (0.7-4.00)

Gliadin IgG Abs <1 U/mL (<7)

tTG     1 U/mL (<7)

[mushroom]

Hi everyone thank you for your replies. If anyone would care to look over my blood test results to see if the complete testing has been done I'd really appreciate it.

 

Original coeliac disease serology:

 

Gliadin IgG  3 Units (<20)

 

Total IgA      2.63 g/L (0.69-3.09)

 

Transglutaminase IgA Ab <4 U/mL (< 4)

 

 

More recent coeliac disease serology:

 

IgA 2.55 g/L (0.7-4.00)

Gliadin IgG Abs <1 U/mL (<7)

tTG     1 U/mL (<7)

 

There are two kinds of Gliadin IgA and IgG antibodies.  The first is the older Anti-gliadin Abs (AGA IgA and AGA IgG) which is not used so much any more.  The second is the newer, more specific Deamidated Gliadin Antibodies (DGP IgA and IgG).  It does make a difference which one we are talking about because the DGP has a very high specificity and sensitivity for celiac disease.  The tissue transglutaminase (tTG) in IgA and IgG versions is more closely akin to  the biopsy result measurements as it measures damage to tissue, which happens as a result of continuing damage.  So the DGP can pick up celiac early, perhaps before damage would be found on biopsy.  The other test, Endomysial Antibodies, is typically only run if the tTG is positive.  So be sure that the Gliadin testing was actually the DGP.

 

And yes, it is possible to have negative bloods, positive biopsy, and vice versa.

[sadsickgirl]

Hi Mushroom, yes the gliadin blood testing, at least for the second blood test was for DGP. It is interesting that I have quite a few of the common vitamin deficiencies that are associated with celiac, low vit d and low b 12. 

 

Seeing as I can't get any doctors to take me seriously I thinking of adopting the diet after easter. From those you have experience how much of your kitchen utensils need replacing? I know about the patsa strainer and toaster, but what about bread boards, wooden spoons , frying pans, stainless steel pots, cutlery etc?

 

The diet seems easy enough but it's the cross contamination that I'd love some tips on how to eliminate/avoid. Thank you to everyone for being so helpful  .