confused

[Tiffany1012]

Hi all,

first time posting here. After years of feeling chronically exhausted, depressed, irritable, bloated (the list goes on and on...) and with a family history of autoimmune disorders, I finally convinced my doctor to test for Celiac and autoimmune disorders. All my results came back negative. 

My celiac results were as follows

 

TTG IgA  <1.2 unit/mL

reference range: <4.0 (negative)

 

Gliadin IgA (Deam)

< 10.0 units

reference range: < 20.0 units (negative)

 

Gliadin IgG (Deam)

< 10.0 units

reference range: < 20.0 units (negative)

 

Should I have my total IgA checked to rule out a false negative? Or is Celiac ruled out since all three tests came back negative?

I don't see my doctor again for another two weeks to go over the results. I was convinced that I would test positive but since I did not, I want to make sure that I know if there is any other tests I should ask my for.

Thanks everyone!

Tiffany

 

[Ennis-TX]

Some people will always test negative on the blood test, odd and rare but it happens. You also have to be eating gluten on a daily basis for the antibodies to show up for it in the test for at least 12 weeks. You can follow up with a endoscope and biopsy, if your having gut issues this might be a great idea to rule out other issues. I might also suggest a colonoscopy to rule out Ulcerative Colitis or other digestive issues there.

Other thoughts you could have SIBO or NCGS. NCGS  can not be diagnosed...heck I was writing up a bit of a summary page for someone else about it might as well make use of the partially filled out notepad here.  Forgive any typos or misinformation still working it out for various sources.

"

1. Acne, Flushed Skin, or Rashes
Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushedcheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back.

2. Distended Stomach or Bloating
A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease.

3. Diarrhea, Gas, or Constipation
These three  symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because,especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea(frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet,namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods.

4. Brain Fog or Migraines
Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins.

5. Joint Pain or Numbness in Extremities
Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limbbeing “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficiencies in Magnesium, B-vitamins

Total elimination of the gluten protein for an extended period of time, say two weeks or a month, is the only true way to identify if these symptoms are linked to gluten intolerance, and even then, it would not be certain. If the protein is eliminated and any of the above symptoms dissipate, then it should be noted that gluten intolerance may be an issue, but be sure to consult a professional for solid proof."

 

[Tiffany1012]

Thank you for your reply. 

I did make sure to keep eating gluten before getting tested. I'm still unsure whether or not I should ask my doctor to run the rest of the tests in the celiac panel.

 

[ravenwoodglass]

On 7/20/2017 at 10:15 AM, Ennis_TX said:

Total elimination of the gluten protein for an extended period of time, say two weeks or a month, is the only true way to identify if these symptoms are linked to gluten intolerance, and even then, it would not be certain. If the protein is eliminated and any of the above symptoms dissipate, then it should be noted that gluten intolerance may be an issue, but be sure to consult a professional for solid proof."

 

Good advice from Ennis. My doctor (allergist MD) had me eliminate gluten, and a whole lot of other things, and said to continue with my elimination diet until symptoms improved. When you add gluten back in try to do it in a form that is a 'pure' as possible. I used Cream of Wheat and Triscuits and though it took 3 days for a severe reaction to happen it did. He said to add it back in for a week or until I reacted. After I reacted he sent me to a GI who confirmed celiac. My diagnosis was before the newer tests came along and I also showed a false negative with blood testing.

[cyclinglady]

Yes!  Ask for the IgA deficiency test!  Why?  Well, your doctor did not even follow protocol.  In order to validate the IgA celiac tests, he should have determined if you are IgA deficient or not.

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 I have never tested positive on the IgG tests and only had one positive on the IgA DGP test, but I was not IgA deficient, so my GI knew that my test was valid and I needed an endoscopy to confirm my diagnosis.  You do not know if any of your tests are valid.  You need the IgA test.  It is a control test only in the case of diagnosing celiac disease.  But....some celiacs are low in IgA and that seems to happen more often in celiacs than the general population.  

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