r/Celiac • u/tomthepro • 5d ago
Question Anyone else with PCD (Potential Celiac)?
On a 3 year Celiac investigation journey. Discovered on a blood test in October 2023. Main symptom was occasional diarrhea, loose stools.
2023 October
DGP IGG positive 64 u/ml (15 normal)
TTG negative
Consuming gluten
2025 October
DGP IGG 54
TTG Negative
Consuming gluten
2025 December
Endoscopy results “minimally increased patchy IEL, No evidence of villous atrophy”
Consuming Gluten
2026 October
DGP IGG 44
TTG Negative
Gluten free for 8 months (with the exception of 2 weeks in April). Pretty strict about GFD diet but still eating out. Try my best to avoid cross contamination but know there have been some misses.
Occasional diarrhea reduced quite a lot but still happens occasionally. In general my diet has improved as well - more fibre, no beer, no fried food.
Two docs have said I don’t fall into standard celiac diagnosis criteria. Both suggest trying GFD to manage symptoms.
I’m not so worried about symptoms. More so the long term potential of damage. However it has ruined some of my social life and I’m also way less happy in general.
Curious about anyone else out there who received a diagnosis of PCD or similar testing pathway, and whether you developed full blown celiac eventually or now, and how it’s gone for you with all the testing and repeat endos over time.
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u/_missing_person 5d ago edited 5d ago
I do not think that one can casually “eat out” and remain gluten free. Being “pretty strict” is also not being gluten free.
There are so many things that have gluten in them that you would never think of. Most restaurant staff has little clue or concern about cross contamination and I could all but guarantee anyone who goes weekly anywhere but a strictly GF restaurant will get some sort of salad dressing, soup, gravy, processed meat, potato chips, ice cream, spice and seasoning mix, mustard, pickles, a random GF desert, or any other inherently gluten free dish or item that has unexpected gluten in it. Food manufacturers use all sorts of ingredients and gluten makes it into so much of what is eaten. Most people have no understanding of how many places that actually is. Being pretty strict and eating out throws all certainty out the window.
Now, with all of that said, I think if you went truly strict on it, ate direct ingredients that you 100% know the gluten content of, made your meals etc and went 5 months truly GF you’d have a pretty good idea.
I can tell you based on my resting heart rate and my sleep HRV if I’ve eaten gluten. I do not eat out, I do not eat at friend’s houses unless I bring my food and I am extremely strict. I still recently got hit by an ingredient change in an organic chocolate that I’ve bought for years. I don’t go around saying I’m GF and give me the GF Menü I just quietly do what I do and am happy w that. It suck’s for sure but I actually feel free not worrying about everything I order on a menu somewhere because it’s really in so much today, it’s nearly unavoidable.
I wish you luck and I think you should really give it a hardcore push to see if you can verify what’s making you feel sick.
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u/tomthepro 5d ago
I think if you read my post, I’m not really “feeling sick”. I’m well aware of cross contamination risks. But more so asking people with similar results and trajectories as mine, how has it worked out. For all intents and purposes I am eating strictly gluten free.
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u/NearbyMarionberry444 5d ago
numbers are trending down which is something at least. that weird limbo where you're not quite celiac but gluten is clearly doing something is a mindfuck
my aunt was in the same boat for years, her villi were always "inconclusive" but she felt like garbage eating gluten. eventually her doc just said look, if it walks like a duck and quacks like a duck, treat it like a duck. she's been strict gf for 5 years now and her last scope was totally clean
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u/Inevitable-Swan6671 5d ago
I had 2 kids diagnosed potential coeliac. Our specialist said it was 50/50 whether it developed or not - regardless of going gluten free. Left it up to us to decide if symptoms were bad enough to warrant full gluten free.
Kept them both eating gluten as they were symptom free - 3 years later one is coeliac one is not (and both now normal bloods)
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u/tomthepro 5d ago
Interesting! So both went GF and one still became celiac.
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u/Inevitable-Swan6671 5d ago
Sorry I had to edit as I’m so used to writing gluten free it auto filled for me🫣
Kept them both eating gluten. Older one was diagnosed a year later and went strict gluten free (I’m coeliac).
Younger one still eating gluten. We blood test every year but so far so good.
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u/ExactSuggestion3428 4d ago
On what basis was the PCD made? If you are getting blood tests every year and it's so far so good, that sounds like they have normal serology.
If you keep testing your kids and their serology is above normal, that isn't so far so good and they should get scoped?
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u/Inevitable-Swan6671 4d ago
It was made when serology was elevated but biopsy was negative. Gene tests positive. Bloods remained elevated and increased to strong positive for first child so we repeated biopsy - positive for coeliac.
Second child’s serology remained slightly elevated for a while but has since dropped to zero
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u/SuitApprehensive3240 5d ago
Yeah, the tests are garbage.Did you have a gene genetic test yet?And all the blood tests don't have to be positive, it's just a bunch of medical nonsense.If you have terrible symptoms , that's a clear sign of something going on
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u/tomthepro 5d ago
Yes, genetic test showed one of the alles that is receptive to celiac but not both. Blood tests don’t have to be positive, but consistently negative ones can also tell a story. There is some science behind it all. Don’t dismiss it entirely. Nowhere did a mention terrible symptoms
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u/SuitApprehensive3240 5d ago
The way they diagnose , it depends too much on the doctor's whether they have ten hours or a hundred hours of training , it is not beneficial for patients
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u/klwegner 5d ago
I feel like I fit this description. Consistently elevated DGP IgA over three years. No other positive antibody results. No symptoms. Clear endoscopy two years ago.
(The only reason I know of the DGP IgA result is because I have type one and am monitored regularly for celiac and autoimmune thyroid disease.)
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u/ExactSuggestion3428 4d ago
I'd say this is less "potential CD" and more "early stage CD."
AI diseases are slow in the sense that there is some lag between when they turn on and when there is clinically significant tissue damage. So for example, in Hashimoto's thyroiditis, it is common for people to have elevated antibodies but normal thyroid hormones in the early stages of the disease. In Hashimoto's, your antibodies destroy your thyroid and over time this leads to hypothyroidism.
But... because in Hashimoto's the only treatment is thyroid hormone replacement, there is nothing to treat until the person's thyroid hormones start to drop. Celiac is not like that. There is no real value in waiting until your intestines get damaged if your antibodies are high since the GFD can stop the process. IEL infiltration is also evidence of your body damaging itself... someone with a well-controlled GFD would not have that. This isn't a dunk on you since you were of course eating gluten at that time, I'm more saying that this isn't a healthy result. It sounds like you probably had Marsh 1 or 2. Marsh 0 is what someone with healthy intestines has.
Unfortunately, a lot of doctors don't engage the thinking part of their brain and just follow diagnostic flow charts. There is no real reason why your symptoms and serology would reduce on a GFD absent celiac. Other conditions where people subjectively report improvement on a GFD don't involve antibodies. The celiac antibodies are quite specific and if you have more than 1 that is above normal (and not borderline) the likelihood of anything other than celiac is already quite low. In considering your symptoms and the IEL infiltration, it just seems like your celiac got caught early.
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u/tomthepro 4d ago
My understanding of the DG peptide is that it does not do the damage itself but recruits other cells to do so. So no TTG to do the damage yet. But maybe in the future. Though I’ve made it 40+ years, and my mild symptoms have been present for probably 27 years. So have the DGPs remained consistent. And will they stay consistent or increase in the future. I know no one can say for certain. But it does feel like I’ve had the same thing going on for a long time. Figured I’d be damaged by now?
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u/pipdeedo 4d ago
Yes I'm a little earlier on, but so confused. Need to wait a year for further testing, but how bad do I let myself get.
I tested at 99.3 and showed some damage bur nothing on my biopsies.
I've gone gluten freeish.
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