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Chuck1004

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  1. An update on my status. My local GI doc said it was a borderline diagnosis. No villi damage, elevated IEEs 7 years ago on biopsy, elevated ttg iga on first lab. Seven years following rare cheating and accidental contamination (fries at a local place weren’t as gluten-free as I thought) perfect repeat biopsy. I’ve been eating gluten daily (normal meals, not just a bite of bread) for seven weeks and had a repeat ttg iga. It was normal. My doc will call me Tuesday but he said he’d likely do a repeat and an endoscopy while I’m on gluten.
  2. Many thanks! I did read that article. I have no trouble believing I'm a celiac, but that both the IEEs possibly being from something else, and the potential false positives on the antibody lab makes me want to doublecheck. Hopefully I'll know in a couple of months.
  3. Somewhat. The staff from the celiac research center indicated it alone would not be sufficiently diagnostic for celiac disease, and as hasn't reoccurred in seven years, it may no longer ben an issue. The way I see it: I'm either a celiac who was diagnosed early before any damage occurred, the IEEs resolved as soon as a mostly gluten free diet was introduced, and as a result of the diet there's no evidence of celiac disease. Once I complete the gluten challenge, I'll likely see the impact of eating gluten and that will settle things. Or, as the celiac research center staff have indicated, the positive antibody may have been a false positive, the IEEs from seven years ago may have been related to something else, and my lack of any reaction to gluten, and despite rare cheating and discovering I'd been more frequently contaminated (French fries from a nearby restaurant were not cooked in dedicated oil as I thought) I have no evidence of celiac disease on biopsy or lab because I was never one in the first place. I'm happy to stay on a gluten free diet for life. I just want to make sure I really need to do so. To your question, the IEEs are either evidence of celiac disease, or show something funky was going on seven years ago that hasn't led to anything.
  4. And just to clarify from my initial post when I threw my situation out there, I've been under the impression for six years that I was diagnosed early prior to intestinal damage. A followup GI doc raised the point that research at MGH-Boston is showing that false positives are more likely than initially thought on the antibody lab and the IEE count in itself is not conclusive as well. To put it to rest, I'm going five weeks into a gluten challenge. If I show evidence of damage or heightened labs after not seeing them for years, that will be evidence enough for me.
  5. Correct. Elevated antibody, increased leukocytes, no villi blunting and normal architecture in 2012, no evidence of celiac disease on followup biopsy in 2018, no evidence of elevated antibodies on followup labs, no notable reaction to gluten at any time.
  6. The only issue (and I have my first appointment next week to pursue this) is I have never had a reaction, never had evidence of villi blunting, and after six years of rare cheating and likely more frequent accidental contamination, showed no evidence of celiac disease on labs or in biopsy. All I have is a single positive antibody test from seven years ago and elevated leukocytes on biopsy seven years ago. I’d be fine being adherent to a gluten free diet for life if it came to that, but I’m in a strange situation where the diagnosing hospital is questioning their own diagnosis.
  7. Can you please reference your source? I’ve discussed celiac disease extensively with three GI practices over the years, as well as my own reading, and I never saw the statistic that accidental gluten increases your risk of colon cancer by 4,000%.
  8. My PCP was trying to get to the bottom of a slightly elevated LFT, and the referred GI doc found a high anti ttg iga antibody. They did a biopsy which showed elevated leukocytes and normal villi and told me I was a celiac. My then-new GI doc followed up with an endoscopy six years later and came back saying no evidence of celiac disease, so keep up the good work on the gluten free diet. My daughter was referred back to the same hospital that diagnosed me to see what we should do for her and gluten, and in looking at my original diagnostic materials they said they wouldn't have made the same finding today without villi blunting based on the one lab and the endoscopy the way it was. If it turns out I'm a celiac, it'll be fine. We've got it down to a science. Eating gluten free is certainly more expensive, more work, requires us to keep our kitchen gluten free, requires out of the box thinking at social events from time to time (I'm presenting at a conference where brown bagging was impractical and the organizers jumped through hoops at the last minute trying to get me something gluten free...I'm a guest at a wedding...cousin's high school graduation and the family tries to order something gluten free and stresses someone will contaminate it before it gets to me...) I've brown bagged to post-wake mercy meals, have friends who don't mind sticking to celiac safe restaurants when we eat out...have great bosses who always make a side trip whenever they surprise the office with a pizza party. But the reality is...if you found out you weren't a celiac tomorrow, and had no symptoms when you eat gluten, wouldn't it just be easier? If I am I am, and if I'm not, it'll be one less thing for everyone to worry about.
  9. I'm completely asymptomatic, so a celiac diagnosis versus a celiac misdiagnosis certainly has a socio-economic impact. On the insurance question, would you mind expanding? My state has strong protections for pre-existing conditions, so I'm assuming this wouldn't be a tremendous burden in the event I shifted insurances? I've never had an issue finding a gluten-free diet that's non-bland. There's just a cost to it. Marrying a pastry chef who bakes gluten-free probably helped. 😛 The situation I had here was a followup doctor questioned the initial doctor's findings. I had elevated antibodies on one blood test and leukocytes were found on biopsy, but there was no villi damage or blunting. If I were symptomatic I'd be casually concerned just to know if I had to bend over backwards to avoid cross contamination, but would maintain the gluten-free diet. Not needing to do maintain one would be a big lifestyle change.
  10. From your lips! I have never seen this calculator before! Looks like under 1.45 is the number to have and I'd top out at 1. My AST has always been normal. Last two labs from 2018 had it at 27. Last two ALTs were 44 and 50. Continuing our discussion of what's wrong with me, I ironically have pseudothrombocytopenia, so a lot of my platelet labs were crap and I don't have the most recent correct ones, but from what I remember I'm well in the comfort zone.
  11. No one has seen me yet to make that determination. When my enzymes were slightly out of range, my PCP sent me for an ultrasound which diagnosed a fatty liver. Blood work showed antitrypsin deficiency and the genetic test showed I was a carrier only. The enzyme then went as out of range as it ever got (Something like 72 on a 1-40 scale, which I believe considers elevation in factors of 40?) and sent me to MGH, who tested it at 55 on their scale of 1-55, were unwilling to proceed to liver biopsy to determine staging since it wasn’t that elevated, and then they made the celiac diagnosis while I was seeing them there for that other matter. They told me to lose 10-20lbs. My PCP told me the same. I did. My levels went back to normal for a couple of years. Then kids. The weight came back and I’m back in the high 40s and low 50s. My GI doc was unconcerned as it seemed to respond to weight loss once. As always, it’s on my list. Any feedback on the LFTs very welcome . It didn’t seem to be the silver bullet so I was waiting to see if it was suggested. Ditto on the issues. I try incredibly hard to stay gluten-free and still was getting glutened at one location with no clue.
  12. I have not. I was diagnosed at Massachusetts General Hospital. My daughter was seen by MGH who referred me to the director of the MGH Center for Celiac Research and Treatment. Several of the staff at my daughter’s office also worked there. I haven’t had the appointment yet. They indicated less reliance on the antibody test due to false positives. I have no GI symptoms and have made stringent efforts not to be glutened on a day to day basis. Because I try to restrict casual glutening (as well as the annoyance of not knowing if you’re being glutened), I cheat rarely because I can. Life is short. If I eat something I love that I rarely have once a year and don’t gluten myself for six months, my assumption was my gut would heal. Assuming I am a celiac, my last endoscopy showed no evidence of celiac disease and my antibody level was normal. It seems to be it’s not doing me harm. Oddly enough, I recently found that a restaurant I frequented pre-endoscopy was not as celiac safe as I thought. (Shared cooking oils.) I don’t remotely envy your circumstances, so please don’t read the wrong way, but knowing “Don’t eat this that or the other thing or you’ll double over” is fairly straight forward. You know what to do and know when you didn’t do it well enough. My first few weeks on a gluten-free diet I remember was agony because I had no way of knowing if I was contaminating myself. My ALT level hovered around 48-52 on scales that range from 1-40 to 1-50. I was later found to have a fatty liver. My amylase level runs slightly high as well. It could be normal for me. I also carry alpha 1 antitrypsin deficiency so there may be a correlation there somewhere. The GI docs I have met with have not been alarmed. I haven’t had it yet. My understanding is if I have the test and it’s positive, I am likely a celiac, and if the test is negative it doesn’t really prove anything. I’m absolutely open to taking it, but wasn’t clear if it would be more conclusive than retesting.
  13. I just wanted to followup on this point directly. The biopsy did not show villi damage. We’re you basing the damage comment on the antibody or the leukocytes?
  14. I’m sincerely appreciative of all the responses! Due to my primary care network trying to keep me in-house, I’m going to be meeting with my local GI doc first rather than the specialist who suggested I may not be celiac, and may get bounced to see them if necessary. To hit a couple of the comments, I was never thrilled with the original doctors who diagnosed me. As I’m sure is SOP, I was seen by a more junior doctor and the senior doctor came in to review things at the end of the appointment. His view was that celiac disease compliance wasn’t a huge deal and “try not to eat much gluten,” so I was not remotely impressed. The junior doctor did the biopsy and insisted despite the lack of villi damage nor reaction to gluten that I was absolutely a celiac because of the antibody reading conjoining the biopsy. As I immediately went gluten free, all subsequent readings were in the normal range. Over the years, I’ve certainly cheated. Not much. On vacation for a day. On my birthday. Maybe 1-4 times a year, once in early years and four times in later years. I always limit it to a single day. I figure if I am glutened, live it up. I’ve never had a reaction. I’ve started my gluten challenge 11/28 and have an appointment with the local GI doc on 1/17. I want to get an appropriate challenge in before retesting my labs. Ironically, my belly is a mess this week from all the bugs my kid brought home from daycare. I am laying off gluten for the week, just in case, trying to limit the variables. My thought process at this point is I had a single antibody lab be high, no villi damage, and the elevated white blood cells on biopsy. I would not be remotely surprised if I am actually a celiac. Given that it’s the original hospital now saying research is showing that antibody test generates false positives, that it was only positive the once prior to the gluten-free diet, it’s worth checking only so that I don’t remain needlessly on a gluten-free diet. I figure if the antibody rises again on the challenge, that will clinch it for me. The inherent difficulty with this is excess variables. Does my belly hurt eating gluten? Well, no, but if I’m cheating, I’m going to eat all the foods I can’t normally eat. I’m grabbing a calzone from my favorite pizza shop I haven’t visited in years, Chinese takeout, a big bowl of soup from Panera. Who wouldn’t have indigestion? I’m hopeful, if I am a celiac, my gut will heal up quickly and now we’ll know. Reactions and suggestions are most welcome.
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