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shirleyujest

Still Wondering If It's Celiac Or Allergy

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Would appreciate receiving your thoughts on my status. Negative blood test but lab only tested 2 of the 4 markers. This left open the possibilities of celiac disease or gluten intolerance/allergy. I opted to skip the biopsy. (chicken :o) Decided instead to go gluten-free, see what happened.

Am now two and a half months gluten-free. IBS gone (that was my last symptom to manifest, just in the past 6 mos-1yr). Stamina building up slowly. Capable of taking one-hour walks 3x/week after several years of disabling exhaustion. Still have some loss of sensation in hands, still have ataxia but not as horrible lately, takes more to trigger. After years of cognitive problems and having a hard time focusing even enough to finish a novel, starting to read voraciously. Still lots of muscle/joint pain. Still get stressed somewhat but it takes a little more to throw me off than before going gluten-free.

Only supplements I added at the time I really suspected celiac disease and went off gluten were Vit. D and B12. All other supps I'm taking now I also took prior to gluten-free -- iron, calc/mag, antioxidants etc.

Also -- fingernails are growing like crazy after chipping at the quick for 10 years. They are painted red as I type. :P

Is there any way my problem could possibly be gluten allergy/intolerance as opposed to celiac disease, and I'm reacting this way because of the vit. D and B12? It seems to me it's a fairly dramatic change. Is it possible it's "just" an allergy?

I realize I may never have a precise answer... but thank you for your opinions on whether it's quacking like a celiac duck... or if jury is still out.

My original plan was to go gluten-free 3 months, then return to old eating habits for a day or two, see what happens. (I may still do that but feel so much better may wait until the 6 month mark; I honestly have no desire to eat the old way.)

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I still had muscle aches for a while after I went gluten free. I don't remember when it stopped. Although, I did notice the last time I took a long walk (about 3 or 4 miles) I didn't have the usual muscle cramps in my legs like I usually do. I have been gluten free for 3 months now and I can finally exercise without all the pain.

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You do sound like one of us. You would need to go back to eating gluten for from 6 weeks to 3 months for testing for celiac or gluten intolerance. An allergist can do skin prick testing for a true allergy but an allergy would not cause nervous system involvement that you have.

With the ataxia, have they done an MRI on you? With gluten ataxia many times we have brain lesions that are referred to as UBOs or unidentified bright objects. Unfortunately in the US some neuros are still clueless that those are diagnostic of celiac disease. I would have been diagnosed years before I was if not for that.

Something that may help with the nervous system involvement is sublingual B12. It will help the nerves heal faster and help them to fire correctly. Make sure the B12 is sublingual and gluten free.

Some believe gluten intolerance to be a precursor to celiac or celiac that has not yet attacked the small intestine. For some of us the impact on other body systems seems to occur before the gut symptoms become severe. Your body is making antibodies when you are intolerant or celiac. Allergic reactions are histamine reactions and while we can have both they are different.

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You do sound like one of us. You would need to go back to eating gluten for from 6 weeks to 3 months for testing for celiac or gluten intolerance. An allergist can do skin prick testing for a true allergy but an allergy would not cause nervous system involvement that you have.

With the ataxia, have they done an MRI on you? With gluten ataxia many times we have brain lesions that are referred to as UBOs or unidentified bright objects. Unfortunately in the US some neuros are still clueless that those are diagnostic of celiac disease. I would have been diagnosed years before I was if not for that.

Something that may help with the nervous system involvement is sublingual B12. It will help the nerves heal faster and help them to fire correctly. Make sure the B12 is sublingual and gluten free.

Some believe gluten intolerance to be a precursor to celiac or celiac that has not yet attacked the small intestine. For some of us the impact on other body systems seems to occur before the gut symptoms become severe. Your body is making antibodies when you are intolerant or celiac. Allergic reactions are histamine reactions and while we can have both they are different.

Thank you for responding ravenwoodglass and helping me play detective. I did have at least one brain MRI a couple years ago and the neuro said it was normal. Think I'll phone him and ask if there were UBOs -- I'd never heard of that. The detailed information here never fails to astound me. I appreciate your corroborating that many with celiac disease have other symptoms impacted before the gut. That's one thing that's puzzled me is not realizing how common the "out of order" symptoms.

The only sublingual B12 tablets at my local health food store had lactose which I can't do. So I bought liquid (Now brand), and I hold the liquid under my tongue for a minute before swallowing. When this liquid gets low I'm going to get sublingual tablets off the internet. Meanwhile maybe I'll take it twice a day.

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I still had muscle aches for a while after I went gluten free. I don't remember when it stopped. Although, I did notice the last time I took a long walk (about 3 or 4 miles) I didn't have the usual muscle cramps in my legs like I usually do. I have been gluten free for 3 months now and I can finally exercise without all the pain.

Thank you for sharing Daphniela... glad you are seeing such improvements!

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    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
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