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- Scott Adams replied to KimMS's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease17considering iViG treament (normal anti ttg iga but high gliadin antibody iga)
Welcome back! It sounds like you’ve been navigating a lot, but it’s encouraging to hear that your last IVIg cycle brought some improvement in vision and ataxia—fingers crossed that continued treatment helps even more over time. The phlebitis must be frustrating, though; hopefully, your care team can find a solution (maybe a different IV site, slower infus... -
- leahsch replied to Nita hearn's topic in Related Issues & Disorders7Rosacea
I was diagnosed in 2003 with celiac. The rosacea in my eye started one year ago. -
- trents replied to Nattific's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Not officially diagnosed but doctor doesn’t want me to do the gluten challenge, advice?
Welcome to the forum, @Nattific! First, let's deal with terminology which can be very confusing because there is a great deal of inconsistency in how the terms associated with gluten disorders are used by lay people and even in the medical/scientific literature as well. Having said that, it is probably more accurate to use the term "gluten intolerance... -
- Scott Adams replied to Nattific's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Not officially diagnosed but doctor doesn’t want me to do the gluten challenge, advice?
It sounds like you’ve been through an incredibly difficult journey with your health, and it’s understandable to want clarity about whether you have celiac disease. While your doctor hasn’t officially diagnosed you with celiac (due to avoiding the gluten challenge), her decision to label it as a "severe gluten allergy" in your chart strongly suggests she b... -
- KimMS replied to KimMS's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease17considering iViG treament (normal anti ttg iga but high gliadin antibody iga)
I'm sorry I have been inactive here for awhile - a lot going on! I started IVIg in Oct 2024 and because of a blip with insurance, I have only had seven cycles (interrupted with two months off). I tolerated the medication well (Octagam), but didn't see much improvement until the last cycle. My vision and ataxia symptoms were noticeably better afterwards. The...- 1
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By Scott Adams · Posted
Welcome back! It sounds like you’ve been navigating a lot, but it’s encouraging to hear that your last IVIg cycle brought some improvement in vision and ataxia—fingers crossed that continued treatment helps even more over time. The phlebitis must be frustrating, though; hopefully, your care team can find a solution (maybe a different IV site, slower infusion rate, or even a port if needed). On the gluten front, I hear your discouragement about eating out. Even tiny exposures can keep antibody levels elevated, especially with celiac or severe gluten sensitivity. It might be worth trying a strict "home-only" phase for a few months to see if your AGA IgA drops further—then you’ll know for sure if restaurants are the culprit. (And yes, dedicated gluten-free spots are the safest bet!) For vitamins: Since your B12 is high, testing other B vitamins (folate/B9, B6, thiamine/B1) could be helpful, as deficiencies in those are common with gluten-related issues and can worsen neurological symptoms. A comprehensive micronutrient panel (like SpectraCell or Genova’s NutrEval) might give deeper insight, but if insurance won’t cover it, targeting B1/B6/B9 tests is practical. For supplements, brands like Pure Encapsulations, Thorne, and Seeking Health are well-trusted for quality and purity (their B-complexes skip unnecessary additives). If you’re sensitive to synthetic forms, look for methylated B vitamins (e.g., methylfolate instead of folic acid). Your current regimen sounds thoughtful—just double-check that your multi doesn’t overlap excessively with your individual supplements! -
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Welcome to the forum, @Nattific! First, let's deal with terminology which can be very confusing because there is a great deal of inconsistency in how the terms associated with gluten disorders are used by lay people and even in the medical/scientific literature as well. Having said that, it is probably more accurate to use the term "gluten intolerance" as a general term referring to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). The term "gluten sensitive", therefore, is probably best used to refer to NCGS. Celiac disease is not an allergy. It is an autoimmune disorder whereby the consumption of gluten causes an immune system response in the lining of the small bowel resulting in inflammation and damage to that lining, what we call the "villi". Over time, this damage causes sufficient atrophy of the small bowel lining to actually impair nutrient absorption, often resulting in other medical issues that are nutrient deficiency related. NCGS is not an autoimmune reaction, nor is it an allergy. We know less about the exact mechanism of NCGS than we do about celiac disease. Some experts feel that NCGS can transition into celiac disease. NCGS is 10x more common than is celiac disease. They share many of the same GI symptoms and, since there are not yet any methods to directly test for NCGS, celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS. It is also possible to have an allergy to gluten just like you might have an allergy to peanuts, soy or dairy or any other food protein. But that falls outside of the realm of gluten intolerance. What is puzzling to me is that your physician chose to label your problems with gluten as a "severe gluten allergy" which, technically speaking, it is not and can be misleading to other medical providers who may review your chart. I would have a conversation with your physician about that. About 18% of celiacs experience elevated liver enzymes. I was one of those and it was what eventually, after 13 years, led to my celiac diagnosis. Within a few months of going gluten free the liver enzymes normalized. But they were never "off the charts" as were yours. I don't disagree with your physician's advice to not attempt a "gluten challenge" for the purpose of further blood antibody testing. Doing a gluten challenge doesn't sound like a wise thing to do in view of the significant liver and pancreas inflammation you are experiencing. However, let me suggest you consider pursuing a endoscopy with biopsy of the small bowel to check for damage to the villous lining. If you are experiencing, as you mention, vitamin deficiencies and electrolyte imbalance, I would think this would be a result of a compromised small bowel villous lining, the place where all nutrients are absorbed in the GI track. You would need to continue to allow some gluten into your diet until the procedure is done for the results to be accurate, however. So, if you could get that scheduled fairly quickly, it might be a viable option. The other option is just to commit 100% to eating gluten free right away. I mean get serious about it, and see if your symptoms and lab work improve. I will include a link to help you get off on the right foot. I really have no doubt that you have celiac disease but it would be preferrable to have an official diagnosis going forward, both from the standpoint of receiving full cooperation from the medical community and for your own resolve in staying on the gluten free bandwagon. Finally, don't rule out the possibility that something else in addition to gluten intolerance is going on. Don't assume that is the whole problem. Make sure you get thoroughly checked for other medical issues.
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By Scott Adams · Posted
It sounds like you’ve been through an incredibly difficult journey with your health, and it’s understandable to want clarity about whether you have celiac disease. While your doctor hasn’t officially diagnosed you with celiac (due to avoiding the gluten challenge), her decision to label it as a "severe gluten allergy" in your chart strongly suggests she believes gluten is causing systemic harm—consistent with celiac. Your family history, symptom improvement on a gluten-free diet, and current lab results (elevated lipase, liver enzymes, nutrient deficiencies) all point in that direction. Many doctors prioritize patient well-being over diagnostic formalities when reintroducing gluten could be dangerous, which seems to be the case here. For peace of mind, you could ask about genetic testing (HLA-DQ2/DQ8 genes), but the most important step is treating this as celiac-level serious: strict avoidance of gluten and cross-contamination. Your body’s repeated reactions—especially the organ involvement—are telling you what it needs. Also, there are downsides to having an official diagnosis, for example needing to list it as a disability on job applications, higher life insurance rates, and the possibility of higher health insurance rates. -
I'm sorry I have been inactive here for awhile - a lot going on! I started IVIg in Oct 2024 and because of a blip with insurance, I have only had seven cycles (interrupted with two months off). I tolerated the medication well (Octagam), but didn't see much improvement until the last cycle. My vision and ataxia symptoms were noticeably better afterwards. The plan is to continue monthly for 6-12 months to see if it helps over time. Unfortunately, I have had phlebitis in my veins after the treatment the past two times, so we are trying to figure out how I can continue to receive the infusions. I am also working hard to be more strict with my gluten-free diet. As I mentioned in my original post, my AGA IgA antibodies have not come down (they came down but not all the way and have risen again). I have concluded it is probably from eating out ::sigh:: which is discouraging because I am very careful, but it seems I might not be able to eat out at all unless places are dedicated gluten-free. Follow up question re: vitamins (esp. B vitamins). Should I get specific blood work to check each B vitamin? I have only had B12 checked, and it is actually high. I currently take magnesium citrate, D3, riboflavin B2 supplements (in addition to a multivitamin). Is there a multivitamin and B spectrum vitamin brand you recommend?
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