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Recent Activity
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- ChrisSeth replied to ChrisSeth's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Waiting on Blood test results…
Thanks guys. I just got my results but I don’t know what they mean… celiac disease reflex panel Immunoglobulin A normal range 66-433 my results are a score of 358. Is this normal? I have no idea what to make of it… -
- trents replied to Jason Hi's topic in Doctors5gluten sensitive Need Advice on Doctors
How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And... -
- Jason Hi replied to Jason Hi's topic in Doctors5gluten sensitive Need Advice on Doctors
"Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies... -
- trents replied to Jason Hi's topic in Doctors5
gluten sensitive Need Advice on Doctors
Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would... -
- Jason Hi replied to Jason Hi's topic in Doctors5
gluten sensitive Need Advice on Doctors
Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positi...
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Thanks guys. I just got my results but I don’t know what they mean… celiac disease reflex panel Immunoglobulin A normal range 66-433 my results are a score of 358. Is this normal? I have no idea what to make of it… -
How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And if you had been gluten free for all those years, you likely had lost any tolerance to gluten you may have had when consuming it regularly. That's probably why it was such a tough sledding experience. Before I was diagnosed, I had very minor GI symptoms. Now, after many years of being gluten free, I get violently ill for hours if I get a good slug of gluten, like when I got my wife's wheat biscuits mixed up with the gluten free ones she made me.
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"Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
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Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease.
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Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positive celiac-specific antibodies. Either way, my treatment is the same: follow a gluten-free diet to avoid feeling sick. My understanding is that there are three main issues related to gluten: 1. Celiac Disease (produces specific antibodies and damages the small bowel) 2. Wheat Allergy (an immune response to wheat proteins) 3. Non-Celiac Gluten Sensitivity (negative celiac tests but still symptomatic from gluten) Regarding tax breaks or workplace accommodations, I came across a statement from celiac.org (https://celiac.org/gluten-free-living/federal-benefits/tax-deductions/) indicating that having any formal diagnosis—celiac disease or non-celiac gluten sensitivity—plus a prescription from a physician is typically required to qualify. In my case, my goal is to avoid feeling sick and secure documentation for both work and potential tax benefits. If I do pursue further tests or get more detailed lab results, I’ll share those here to confirm whether the doctor is suggesting celiac disease or truly NCGS. But as of now, the doctor’s comments lead me to believe I fall under NCGS.
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