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Is Eating Gluten/wheat Needed To Diagnose Celiac? Nerve Symptoms Scary.

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Hi -  I have undergone the most disturbing last 7 months of my life and as a result have been to several doctors in an effort to diagnose the issue.  Having ruled out many things, MS, brain tumors, spinal cord damage, Lupus, and the list goes on, I am left with a  self diagnoses of Celiac.  My next stop is a Gastro Doc but my concern is I read and read and read, I decided that the elimination diet was a starting place.  I have been on the diet for 2 months and have seen a reduction in many symptoms.  


Is there any way to properly diagnose Celiac without my having to eat gluten/wheat?  I'm terrified to eat it again as the thought of the symptoms coming back to that degree is overwhelming.  I've been told by my rhumatologist that the only way to see the antibodies is to consume the allergen for 2 weeks prior to testing.  


Does anybody have thoughts on this?  What tests are best for diagnosis?


Are there any special tests I should ask for regarding my neuropothy?  A neurogologist did and MRI on my brain and spinal cord and then wiped her hands of the case but the tingling and numbness in my limbs is the most disturbing symptom.  


Thank you,




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Keep reading.  We talk about the need for testing a lot.  If you think you will need an official diagnose ever, or might lapse with the diet, you will need the testing.  Also, it can help unsupportive family or friends come around.  You do have one positive test already, so it sounds to me.  You have a positive response to the gluten free diet.


If you do need testing, you will need to eat gluten again long enough to bring the gluten antibodies high enough to register on the testing.  I would suggest you take a list of symptoms that changed after going gluten free and also mention your fear of taking in more gluten.


Someone might please, post the list of tests.  I can never find it when I need it.


Whatever you decide on the testing, I hope you will soon be in excellent health.




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Did the neuro find anything called UBOs on the MRI? Not all neuros are aware that these are often seen in celiacs that have brain impact. Mine found them and thought MS but when the spinal tap didn't show the debris found with MS he also threw up his hands and dismissed me.

Also have they checked your B12 levels? If so compare those results with previous ones and see if the levels are dropping. The levels should be over 500 and if yours are dropping from previous tests that could mean that your body has lost the ability to process B12. Some will have symptoms before they get below the normal levels and some doctors are still using the old 250 level as normal.


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Normally you need to be eating gluten to have accurate testing but the auto-antibodies can linger in some people for quite some time. I still have one barely positive test (tTG IgA) after being gluten-free for well over a year. That's not common but levels can stay elevated for weeks or even months.


These are the tests: 

  • tTG IgA and tTG IgG (most common tests)
  • DGP IgA and DGp IgG (newest test, tends to show positve faster when eating gluten on a challenge, a good test for kids)
  • EMA IgA (tends to show advanced, untreated celiac)
  • total serum IgA (a control test to ensure you make enough IgA to test accurately, 5% of celiacs do not)
  • AGA IgA and AGA IgG (older tests that show gliadin sensitivity rather than attempted villi damage, not the most reliable)

You might as well test now and see if anything comes up. If it's negative then you can consider whether you want to try the 6 week gluten challenge. If you want to try the endoscopic biopsy, that usually requires less time eating gluten, usually 2-4 weeks.


Have you had an MRI  of your discs done? I have herniated discs and it caused tingling and paralysis in my leg. I am guessing it is gluten related if you are a celiac though. Keep in mind that nerve and joint pain, and cognitive issues tend to take longer to improve on the gluten-free diet that stomach aches or headaches (as a general rule). It can take months to a year or so.


Good luck!


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At the ICDS, the doctors said that they mostly use : tTG IgA  tTG IgG and the serum IgA


If either of the tTG's are positive, head to a biopsy.  The total IgA is to explain why the tTG IgA might be negative.  If the total  IgA is low, you don't make enough of what is tested for in the IgA version.  However, the docs felt the IgA version was the best for most people.



I have seen some of these "Celiac panels" and they contain extra tests you don't need like the AGA tests.  I wonder if its just to make the panel cost more?


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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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