full image - Repost: My celiac journey: Asymptomatic / silent celiac, refractory celiac, etc. ~5 years since diagnosis (from Reddit.com, My celiac journey: Asymptomatic / silent celiac, refractory celiac, etc. ~5 years since diagnosis)
Mining:
Exchanges:
Donations:
Long post alert! I wanted to share my celiac story in the hopes that it can help some others who may be experiencing some of the same things.Early symptoms:Never had any GI issues until my late 20s. I first noticed them around 28, after returning from 1 year in SE Asia where I had frequent stomach bugs—one of which was quite severe (I theorize that this was my CD “trigger” but we’ll never know for sure). I noticed when returning back to the states that I continued to have frequent loose stools and gas, but also frequent headaches and fatigue, especially in the afternoons. When I would go out for a beer at happy hour, I would immediately want to go home and take a nap. But nothing too debilitating, more of a minor annoyance that seemed worth a mention to my GP at my annual physical.Diagnosis: I brought up the above symptoms, asking my doctor if I might be lactose intolerant (my grandmother was lactose intolerant and I ate lots of dairy). He then asked about my ethnicity. When I told him “northern European mutt” he noted that ~1/100 people of northern European ancestry have Celiac, and recommended that I do the blood test to rule that out. To my surprise, the office called me back a few days later, informing me a negative result (TTG-IGA test) was 0-7, a mild positive was 7-10 (my memory might be slightly off on the thresholds, but you get the idea) and that I had maxed the scale out that goes up to 120. Congrats—you have Celiac. Initial steps:I went back to the office and was seen by a PA-C in Gastroenterology. I asked if I needed to do an Endoscopy to confirm the diagnosis—my insurance at the time was weak so it would have cost 2-4k. She said that given how high my TTG-IGA was that it was unnecessary. There was no other plausible explanation other than Celiac. So I went totally gluten free after one final Thanksgiving feast in late November 2020. Going gluten free:It was both easier and harder than I expected. Cooking at home. No big deal. Missing out on craft beer, checking my family at every step for holiday meals, and eating out / while on the road—much harder. But I committed and have never intentionally cheated. I take all reasonable precautions while still living my life. I still travel (I use FMGF app or Google reviews to find safe restaurants or bring food as needed), I still eat fast food when in a pinch (usually Wendy’s chili or Chicfila), etc. I’ll use shared cookware at Airbnbs or family homes, but never a shared toaster, shared fryers or restaurant pizza ovens. Lack of response:I continued to check my TTG-IGA levels every few months over the next several years. Frustratingly, they wouldn’t go down. 120+, 88, 60, 91, 54, 46, 52, etc. I couldn’t get to the <20 range that my doctors were looking for (new provider had a slightly different scale than the first). And while many in this sub would argue I was taking too many risks, I had a friend get diagnosed a few months after me, and who takes the same level of precautions (or less, frequently eating out on work trips), and his levels immediately dropped to <10. So I thought something might be up. Physically, I felt fine. Maybe occasionally a bit more tired than I’d like, and occasional loose stools, but that was really it. The two times I KNOW that I accidentally consumed gluten since diagnosis…nothing happened. But I (like many here) worried about the long-term effects of Celiac.Seeking out an expert:After moving in 2021, I sought out a GI MD to check in on my Celiac situation, but I found him to be relatively unfamiliar with CD and he didn’t seem to care about my elevated TTG-IGA. So I did some research into other docs in my network and found one who was the head of the GI department and the only doc on my healthcare provider’s website with a clinical interest in CD. I had to fight tooth and nail to get an appointment with this GI doctor but thankfully I eventually got through the gatekeepers, and he has proven to be as fantastic as advertised. I asked him a litany of questions of things that tend to pop up on this sub. Am I being careful enough with cross contamination (e.g. is it safe to cook in Airbnbs), will this take years off of my life, etc. I recorded all of his answers, but in the interest of brevity, my takeaway was that A) he and the other MD are much less concerned about cross-contamination from chapsticks, shampoos, wooden spoons, or shared dishes than people in this sub. Neither thought these were reasonable concerns. They both encouraged me to live my life (e.g. don’t stop traveling) while taking all reasonable precautions. B) Re premature death—his takeaway was that anything that would lead to premature death like lymphoma would show other warning signs indicating uncontrolled Celiac well before we got there — e.g. nutrient deficiencies popping up in blood tests, elevated lymphocyte counts, etc. He had only seen a handful of bowel cancer cases in his Celiac patients (and correlation =/= causation). Overall, he did not seem to think that Celiac meant any of us should expect to die a premature death as long as we are able to keep it well-controlled. But he did recommended an endoscopy to get a closer look at where I stood given my stubborn case (i.e. is there villi damage?). I did the endoscopy in September 2024, and the results were as follows: Chronic duodenitis with partial villous shortening and increased intraepithelial lymphocytes. Although there is not an impressive amount of intraepithelial lymphocytosis, in the clinical setting of positive TTG serologies, the findings are consistent with celiac disease.Summary: Your biopsies of the duodenum confirmed ongoing celiac sprue activity and changes. Your celiac sprue serology , TTG, was still elevated at 46. Given the substantial villous damage (in his words—Marsh 1-2 range. Probably 2) and persistent high TTG-IGA, he recommended further action—steroids. Steroids:In my layman’s googling, I didn’t find much on the effectiveness of steroids in treating CD, but the expert doc said that he had seen, in his experience, that sometimes a course of steroids can “shock” the immune system into calming down—an x factor in lowering TTG-IGA when it seems to be stuck. Given his extensive experience, I trusted him and was happy to give it a try. First we did 4-6 weeks of Budesonide—a relatively mild steroid. He told me side effects should be mild, but it also may not be very effective. After the course, we did another TTG-IGA reading:Before budesonide: 46After budesonide: 52Since it didn’t work, he then recommended Prednisone. I had heard lots of things regarding side effects of this drug, so I was a bit more nervous. I didn’t want to get explosive weight gain, moon face, mood issues, etc. Luckily, I found the side effects of both steroids to be mild. I got a mild rash around my belt line from Prednisone, and experienced a daily rush of superhuman energy every day around early afternoon (after taking it in the AM), which was kind of wild. Made me feel extremely productive, a bit too talkative, and even jittery, but it would go away by 3 or 4pm. Other than that, nothing. The results?Before prednisone: 58After prednisone: 55. Essentially no change. Leaving no stone unturned:The expert doc was frustrated that the steroids didn’t do the trick, and I was similarly disheartened. I asked if this meant that I had refractory Celiac—and while he was initially reluctant to give that diagnosis, eventually it did appear in my visit notes / medical record. He recommended one more Endoscopy to see if the steroids had made a difference on my villi damage, and to do some additional tests on my elevated intraepithelial lymphocytes to rule out anything concerning that might suggest lymphoma / cancer. The second endoscopy:In June 2025, I did a second endoscopy. The results:Your celiac serology is elevated, but lower than the last few checks. Your biopsies did show mild inflammation but intact villous structures which is good. There are no signs of changes in the T Cell of a precancerous process on the special studies. Thus no signs of the concerning potential of refractory celiac sprue. Since the inflammation was mild to minimal and the serology is lower, we can continue to treat with a gluten free diet and periodic steroids if needed until a more definitive celiac treatment becomes available in the future. Summary:It has been almost 5 years since diagnosis. As someone who takes their health very seriously, I want to do everything I can to understand and manage my particular case of Celiac, which is a bit of a paradox — silent Celiac (minimal / no symptoms) that is also highly sensitive and not very responsive to gluten free diet (borderline refractory). After exhausting all testing options (serology, endoscopy, pill cam), unorthodox treatments (steroids), etc., my trusted Celiac expert MD believes I am doing everything I can and should expect a full, fulfilling life. I’ll continue annual check ins with him and consider alt treatments in the future, but for now—I have clarity. Hoping this novel of a post helps anyone who may be dealing with something similar. Happy to answer any questions.
Social Media Icons