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 this...as 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.
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.
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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303
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.
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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"We have always found the Irish a bit odd. They refuse to be English."
Winston Churchill
May your glass be ever full. May the roof over your head be always strong. And may you be in heaven half an hour before the devil knows you’re dead.
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