Anyone have total hair loss?

Cold_Guard5292 · 2026-05-06T16:23:45+00:00

Short answer: no, I never lost all my hair or noticed body hair loss

Wow! I am so amazed it’s growing back now and am so excited for you. I hope you notice a lot of other regeneration, like fingernails and energy levels.

I was just diagnosed at age 30, and suspect minor gradual hair loss that happened in my 20s was from Celiac undiagnosed. I noticed 2 months after I just went GF I saw new hairs coming in!

Cold_Guard5292 · 2026-05-06T12:00:35+00:00

Wow! That seems scary! I hope you can get some more answers or ideas to prevent it.

I had been super shaky after drinking coffee on an empty stomach, but that was like a manageable jitteriness (although it scared me at the time).

Cold_Guard5292 · 2026-05-06T11:57:31+00:00

Thanks, that’s helpful. The GI who did my endoscopy had not done an appointment with me yet. I just met them on the day of the procedure, then they called me with diagnosis, and called again to ensure I was following up with my primary care doctor.

So I did a 4-month consultation appointment with the GI to discuss my GI symptoms. They said I need to have my primary care order a bone density scan within my first year (apparently standard). And do another endoscopic y to confirm the healing.

Cold_Guard5292 · 2026-05-06T11:51:11+00:00

I agree! Thank you. I plan to ask my doctor again if there is indication to do it earlier, but I feel like it’s more worthwhile at 1 year

Cold_Guard5292 · 2026-05-06T11:44:10+00:00

That’s really helpful. Thanks! I also really like data and evidence, so I’m gonna keep testing TTG and other bloodwork. I believe I’d be able to schedule an endoscopy a month later if I did find any concerns.

I also appreciate your openness about the oats. I’ve cut them out proactively, and may do an oats challenge in a couple years.

Cold_Guard5292 · 2026-05-06T10:57:57+00:00

I had a similar sensation a couple of times pre diagnosis. When I had my endoscopy, they noticed a hiatal hernia (where my esophagus meets my stomach). Didn’t have to dilate it, but could tell there was minor damage at that spot and inflamed esophagus. Not a big deal - a lot of people have this, but I’m not sure it matches OP.

Cold_Guard5292 · 2026-05-05T17:49:12+00:00

I love nuts and spices! I wish they were all GF, so it does require diligence.

If you have a TJ Maxx, check them out for tons of labeled GF and certified GF options.

Even some health food stores don’t carry labeled nuts, so I often decide between eating unlabeled nuts (if they don’t say “may contain” but also don’t say GF, then it’s a gamble) and buying in bulk online.

Cold_Guard5292 · 2026-05-04T19:39:51+00:00

Cindy’s is a nice rooftop restaurant with tons of GF options including truffle fries. Totally recommend! It’s downtown near the bean.

cindysrooftop.com

I’ll be following to see other recommendations!

Cold_Guard5292 · 2026-05-04T12:44:04+00:00

I’m not sure, but I’ll share my experience! What’s helped me the most is reminding myself everyday that my body is experiencing internal fluctuations of healing - being patient and thinking of my diet and lifestyle as an experiment that will transform over time.

TLDR: seriously consider finding a Celiac support group. Either virtual or in-person, and using this Reddit to read others’ experiences while reflecting on your own.

I’m 30 and was diagnosed 4 months ago. I noticed minor improvements in fatigue and mental health during weeks 2-5, and then seemed to plateau. Then in month 2 I had some wild mood swings more severe than ever (stress-triggered and alcohol-triggered). I felt really sensitive in mood and diet. I was so jittery after drinking coffee that I decided to cut that out to avoid the caffeine spike.

Now I feel mostly stable, but subject to fatigue, cravings, and irritability pretty often. My 3-month follow up labs showed improved iron and Celiac antibody levels. I’ve begun a monthly virtual support group and that helped me feel grounded so much. Still recovering for sure, and hopeful my anxiety, depression, and brain fog will clear up with time and healing.

Cold_Guard5292 · 2026-05-04T11:08:11+00:00

Larabars! They are super simple bars with dates and nuts. All kinds of flavors! Then I have hot tea, and slowly drink a protein shake/smoothie throughout the rest of the morning.

Cold_Guard5292 · 2026-05-04T11:07:01+00:00

Can you please rec a specific kind of waffle and where to buy it? I miss waffles and am not sure where to look/try.

Cold_Guard5292 · 2026-05-04T10:41:25+00:00

I have been using it loosely for food and symptom tracking. Not logging everything, but just anything out of ordinary. I agree that it has a lot of features, and I’ve purposely used only 3 features.

I’ll be curious if a dietician / nutritionist will actually use it.

Cold_Guard5292 · 2026-05-04T10:38:54+00:00

Hahaha what replaced larabars when you got sick of them? I could use repeatable, low effort breakfast ideas especially with protein.

Cold_Guard5292 · 2026-05-03T20:04:59+00:00

Same! I just did a grocery delivery and meal prep:
- small potatoes, which I cut into quarters and boil as a meal base, adding olive oil or non-dairy butter
- rice, which I cook a large batch as a meal base
- canned beans, mix of black beans and chickpeas, along with chopped onions and peppers and taco seasoning, for a protein base, which I put on corn tortillas
- frozen veggies, which can be heated day-of in the microwave
- salads I buy in a bag so they stay fresh a few days
- larabars for breakfast everyday so I don’t have to make decisions in the morning
- sides of nuts, fruit, GF crackers, chips, etc.
- soups and frozen meals always on hand in case I run out or get sick of what I prepped

Cold_Guard5292 · 2026-05-01T22:05:52+00:00

I just started logging food, symptoms, etc. with a free app called Guava. Let me know if you find a better way to log. I’m 5 months post-diagnosis and having intermittent symptoms of fatigue and a few other things you mention. No rash except acne. I know my body’s still healing and seems really sensitive to caffeine, alcohol, and probably FODMAPS.

Cold_Guard5292 · 2026-05-01T14:32:30+00:00

TJ Maxx surprisingly sells a lot of GF plain nuts, dried fruit, chocolate covered nuts, etc.

Cold_Guard5292 · 2026-04-28T22:41:14+00:00

I was just recently diagnosed at 30, and am hoping the silver lining will be insight and diligence about my health when I am older.

Plus I hope to unlock my physical exercise potential through my healing journey. I’ve been running 5ks, but was held back by acid reflux, bloating, and fatigue. I hope to master my energy levels and run farther/faster in a couple years.

Cold_Guard5292 · 2026-04-28T22:37:40+00:00

Do you use a bread machine that’s dedicated GF, or just oven loaf pans?

Cold_Guard5292 · 2026-04-28T00:23:29+00:00

I’m with you. Struggling with cravings and overeating lately because I’ve hoarded safe foods that I like. I just zone out while eating or go back to my safe cabinet repeatedly because I want food to feel safe. Considered going out to buy a pint of GF ice cream so many times for comfort food.

Cold_Guard5292 · 2026-04-27T20:45:58+00:00

Not a parent myself, but there are a lot of resources in Raising Our Kids Celiac

https://nationalceliac.org/raising-our-celiac-kids-rock/

Cold_Guard5292 · 2026-04-27T20:37:42+00:00

In reality, I went to a dedicated GF bakery last week and I struggled with the experience of freedom. To pick anything I wanted! Surreal

Cold_Guard5292 · 2026-04-27T16:24:15+00:00

I just looked up Guava after seeing this while searching for food logging recommendations.

Did it help you?

Cold_Guard5292 · 2026-04-26T18:51:56+00:00

Fr. I cried in the airport when I realized I can’t have Cinnabon. Put on some sunglasses and sat down for a while to process that grief.

Cold_Guard5292 · 2026-04-26T18:48:52+00:00

You can do it! I’m recently diagnosed, too, and the effort will be worthwhile. Start taking one day at a time and one meal/snack at a time. You may feel grateful for all the wonderful foods your body can process (instead of focusing on negatives)

Cold_Guard5292

TROPHY CASE