u/Shot-Amphibian-3239

Hi there! I started Zep in April 2024, achieving GW of 125 (SW 212) and I’m 5’3. I maxed out at 10mg, and then at goal went down to 7.5 for 2 months, and then down to 5mg and have been on that for more than a year. I’m wondering if I should try and go down to 2.5mg. I want to preserve muscle and I saw something saying that many people can maintain at the very lowest dose. If I do this and then I find I’m ravenous or start gaining, I guess I could go back up.

I just don’t want to rock the boat but also thinking taking the least amount of meds possible might be better. To be clear, I’ll never stop these meds 😅

Did anyone have elevated prolactin around diagnosis prior to going GF?

Sometimes you feel like you need to pee really bad and not much comes out (and no, not like a UTI, like before you’re going to sleep and you get out of bed to pee because you can’t go to sleep because you really need go pee and then the amount is like “why did I get out of bed for this?”).

Other times I’ll wake up in the morning and it doesn’t feel like I have that much to go, and I pee for like a really long time. It seems like bladders obviously can expand significantly but why does it feel so differently - clearly there is a mental component lol

I am not asking for medical advice.

I was not having serious celiac symptoms and was kind of diagnosed as a fluke after deciding to deal with some smeary poops that aggravated hemorrhoids and I was tired of it. Went to GI in January. I’m less than 3 months gluten free and my latest TTG IgA is back in normal ranges?

The full diagnostic timeline:

Feb 11, 2026: TTG IgA 19.1
(scale is 15 or higher is positive)

March 23, 2026: biopsy results positive for celiac The duodenal biopsy shows marked intrepithelial lymphocytosis with associated moderate to marked villous atrophy, suggestive of celiac disease. Plasma cells are present. No organisms are present. These pathologic features are non-specific and may be seen in tropical sprue, unclassified sprue, bacterial overgrowth, specific food allergies, and even common variable immune deficiency. Clinical correlation is advised.

April 10, 2026: TTG IgA 7.57
(different lab and scale is 5 or higher is positive)

Got a second GI to review both tests and endoscopy and he confirmed celiac - likely just caught early.

I went essentially gluten free except for a few last places I wanted to have one last time in April, culminating in 3 days of hard gluten eating at my favorite restaurants in my home town.

May 1, 2026: went fully-gluten free

I switched to Kaiser and since I was only early on my GF journey I asked for another TTG IgA with their lab so I could compare apples to apples in 6 months and a year when I test again.

July 8, 2026: TTG IgA value is 5.8 - less than 19.9 is a normal value. 2 months and 8 days GF

Is this possible?!? How am I healing this quickly? I’m not complaining, but most of what I’ve read says that it takes 6-12 months or even more for severe damage to heal.

Anyone else this quickly on the mend?

So, I reached out to a large, US-Based company, with a question about where I could buy their product, and the rep replied and their name is Nemesis.

Not sure if it's the name their mama gave them, or a chosen name by someone who is in a non-English speaking country that needed an English name? Or, someone with a sense of humor.

However, they were not able to help me, so the name fit.

Hi, I have a few bouts of femoral nerve pain a year (1-2) and was having one last week. On Saturday I went to a yoga class and we did obviously a lot of poses and afterward my muscles felt like I had literally had the most amazing relaxing release in my glute, hip and leg were feeling so much better.

I don’t know exactly which exercise did the most benefit for the pain. We did some planking, some bridge, a very light flow. Star pose. I don’t think we even did happy baby or pigeon.

I’m wondering if anybody can weigh in on the best poses for femoral nerve pain! Next week I can talk to the instructor and see if she can just give me the poses we did in the class, but I want to make sure this doesn’t come back in the meantime!

The paradox. All of the loaves of GF bread I’ve found have bread slices the size of postage stamps.

And all of the hot dog buns (Rudi’s, Schar’s) have the most massive rolls and are so much bread, of course they come in 6 or 4 roll packs respectively.

It’s like they are for Brats. I wish they would use the exact same amount of material to make 8 buns instead!

It’s just an observation, but the two times I’ve had hotdog since I was diagnosed with celiac disease. I ended up throwing away so much of the hotdog bun bread because it was just so much bread!

Hello, I (F42) was recently diagnosed with Celiac disease. I had mild GI symptoms there, and am realizing that brain fog was probably my biggest/worst symptom. I am 2 months gluten-free, and my Ferritin has spiked.

I AM NOT SEEKING MEDICAL ADVICE, as I have an appointment with a new PCP (because I had to change insurance!) in less than 2 weeks, so will run this down with her.

That said, I have severe anxiety and have been through a lot of things this year, so I wanted to see if anyone here had "normal" Iron profiles, and then were diagnosed with Celiac, and saw an increase in Ferritin and were later diagnosed with Hemocrhomatosis.

My thoughts:

Did going GF has increase my absorption of food and that is increasing my ferritin? I have seen some newer studies that show that GLP/GIP can actually lower Ferritin (https://dom-pubs.onlinelibrary.wiley.com/doi/full/10.1111/dom.16368), so I am wondering if this masked this condition until I went Gluten-Free.

Some stats, which I have a lot of recently due to being on a Zepbound since April 2024 - Sadly I can't get a nice graph of these because the ranges vary and they are from different providers):

Ferritin: Normal Range is 8- 252 on all tests before April 2026
6/21/2021 - 161 (normal range 8 - 252 ng/mL)
1/19/2023 - 134 (toward high end of normal range 13 - 150 ng/mL)
6/30/2023 - 134 (normal range 2 - 252 ng/mL)
10/11/2024 - 185 (5 months on GLP - normal range 7 - 271 ng/mL)
1/22/2025 - 204 (creeping up in normal range of 7 - 271 ng/mL)
10/31/2025 - 184 - (normal range 7 - 271 ng/mL - and this lower number corresponds to when I think my celiac gene was triggered last fall (stress+illness), which could possibly be explained through lower absorption?
4/10/2026 - 252 (still within normal range of 7-271, but increased significantly since October 2025)
6/27/2026 - 297 (OUTSIDE normal range 15-205)

I don't have nearly as much data on Total Iron, which is currently sitting in the middle of the normal range for the three tests I have over the past 3 years.

For Total Iron Binding Capacity, in 2023 I was in the middle of the range at 293 with a normal range of 222-409 ug/dL, but I am at the lower end today at 234 within the same range.

EDIT TO ADD Iron/Transferrin Saturation (I didn't know they were the same thing and the bot said add these)
4/10/2026: 26 Normal range: 13 - 45 %
6/27/2026: 33 Normal range 16-50% (slightly increasing)

Long story short, I plugged all of this into the internet and saw that one of the causes could be Hemochromatosis. I am of northern european descent, and I do not menstruate due to an IUD. Stats say that this often appears between ages 40-60, and I am 42.

I know elevated ferritin can be due to inflammation in general as well, which doesn't totally make sense because I had an elevated WBC in April, but I had been sick with traveler's diarrhea, and my repeat bloodwork on 6/27 showed the WBC back to normal.

Now, Idk if Ferritin takes a while to elevate and then back to normal after infection...

Again, I am kind of just looking to see if anyone out there was in my same boat, and if they have any insight. I know those of us with chronic conditions become experts! TY

The anxiety and overthinking is strong today!

I work for a company and we are doing snack bags for an event, and we were going to fill the bags with Chex Mix, which is not GF. I am wondering if I should ask to sit out filling the actual bags? I am not sure if I want to make the statement of "can we do a GF snack," either.

Also, I am thinking we shouldn't be doing that at all - we should make a little bag that has individually-wrapped snacks in it - rather than stuff that's been open - like for literal sanitary reasons.

So, the two questions are:

1. Am I being paranoid about Chex Mix dust if I were to help fill these bags
2. Do you all agree that we should actually do individually-wrapped snacks instead.

OK, here’s the context. I had a positive. TTG IGA test in February. This prompted the G.I. to add an upper endoscopy to my colonoscopy. Then I didn’t believe what was happening (positive biopsy) because that’s not why I went into the doctor. I had another blood test performed by my PCP at a different lab which also was positive. Now I believe it.

Now I’ve switched to Kaiser since diagnosis. I’ve only been gluten-free for about two months. And I know that I’ll need to have another TTG IGA in a year to make sure my GF diet is working.

My friend had the blood test in Kaiser and her scale and results looked different than the other lab’s scales.

I asked the new PCP if I could do another test now since I’ve switched to Kaiser so that in a year I’m comparing apples to apples rather than a test at a non-Kaiser lab to a Kaiser lab.

I think part of the reason that I’m interested in doing this is because I had a CPAP test one time with the leads on my chest and then I had another CPAP where they just had me wear a ring and the ring said my sleep apnea had actually gotten worse even though I’d almost lost 100 pounds. So I wanted to do another CPAP test of the same kind because I was comparing apples to oranges.

Thoughts? I’ll happily pay out of pocket. The PA I spoke to said she didn’t believe this was necessary, but knowing how little the general medical population appears to know about celiac disease, I just wanna know!

New to Celiac diagnosis and omg, TJ’s GF Waffles are Five Stars. That’s all.

Our mother has been secretly acquiring cigarettes, despite our best efforts to keep her from doing so. She has lit her face on fire twice while smoking with her oxygen in. The second time was so bad that she was hospitalized for two days. I picked her up after that hospitalization and took her home, and I was unable to find the cigarettes that she had been smoking when she lit her face on fire. I left for 30 minutes and came back and I found her in her bathroom smoking cigarettes with her oxygen on again. Mind you when she lit her face on fire that time my brother had gone out of town for one evening and came back to find her laying in her own urine with her face, bloody bruised and burned. Her phone was literally right next to her and she could’ve called for help at any point in time. However, she did not. When I came back to find her smoking right after she had been discharged from the hospital, I asked her why she was doing it and she said it was because, “ I am stupid.” now she says she does it because “ I am a smoker.”

There is documented cognitive decline. She did not pass her mental test at the physician last time. We have been rescheduled to come back for a mocha test. Brain scans show some vascular dementia.

I talked to her doctor about what we need to do to secure, guardianship and conservatorship because that is appearing to be the only way that we can stop her from doing things that harm herself and harm others. We live in a dry climate. In addition to lighting your face on fire, she could blow her house up or even start a fire that is bigger than her house and takes out an entire neighborhood.

I literally do not know what to do. Do I call adult protective services? (That is what the PCP said to do. A different doctor actually called APS on my mom for self neglect last year but we never heard from them.)

Do I call the police and say that I know of a person who’s a danger to themselves and other others?

When I was trying to get the cigarettes from her after I picked her up from the hospital, she was cackling at me because she had hid them in her adult diaper in the waistband. I told her that I couldn’t leave without confiscating that pack of cigarettes and she said. “well go ahead and stay in the guestroom then.” of course I’m not gonna stay in her house when she’s smoking with her oxygen on because I don’t wanna die of her blowing the house up.

The last time we went to the PCP, she actually told my mom a story about how a woman blew herself and her family up by smoking with her oxygen on it, and it doesn’t appear to phase my mom at all.

This is one of the issues we deal with with her. Alcohol, alcoholism, narcissism, excessive online shopping, etc.

Literally lost it what to do.

For those of you who were essentially asymptomatic (like me), how long did it take for you to “get glutened” after going GF and having bad GI symptoms? I’m afraid for what is to come 😭😂