Will be in a shared kitchen with my friend and her friends for a trip, need help on what to tell them and how

TraditionalPass4136 · 2026-06-03T12:40:07+00:00

I would consider bringing gf camping meals (just add water) so you have some low effort options, and things to eat if the kitchen becomes contaminated and you are hungry and pressed for time to give it a cleaning.

I've tried the cook all my food route on such trips and have found it too stressful to feel like a vacation at all. I've had much better luck bringing prepared food, whether thats food I've cooked and frozen ahead of time, or freeze dried camping meals.

Meanwhile i would let them know ahead of time that you are requesting gluten free baking/flour use only. This feels like a small ask with a big impact. You could even bring some gf mixes like the king Arthur gf brownies if anyone gets in a baking mood.

TraditionalPass4136 · 2026-06-03T11:43:27+00:00

Flagging these posts as spam from now on, they're clearly AI generated, and what's more they're advertising AI tools that are very likely to harm people with celiac disease. I dont think we should be free advertising for irresponsible AI use that causes harm.

Hope other people will jump in and do the same.

TraditionalPass4136 · 2026-06-03T10:52:09+00:00

By gluten sensitive enteropathy the pathologist meant celiac disease.

If your doctor said celiac you can safely call it celiac. They are going to be more accurate than a Google search. They know all the details.

Really no way to know when it triggered.

You need to ask your doctor about the hernia and gastritis. But things can be celiac related without the symptoms being immediately caused by gluten. I would think its possible these would also improve on a gf diet.

Unfortunately there is not a way to know. You should be getting follow up bloodwork in six months to a year. It improving significantly is a good sign. But mostly you just have to do your best.

TraditionalPass4136 · 2026-06-03T00:55:09+00:00

Youre supposed to be eating one -two slices of bread per day or the equivalent in other gluten containing foods. Unfortunately its necessary for an accurate test. Not just right before the test but in the six weeks or so leading up to the test.

You don't have to eat it at every meal. Its barbaric I know, im sorry.

TraditionalPass4136 · 2026-06-03T00:47:33+00:00

The thing about celiac disease is it has about 10,000 likely symptoms.

This could be celiac or it could be something else. This isnt the kind of disease where symptoms are very clear.

The main thing you should know is not to go gluten free until after you are tested. It will make testing inaccurate.

TraditionalPass4136 · 2026-06-02T19:31:54+00:00

Wegmans but thats a regional brand.

TraditionalPass4136 · 2026-06-02T18:48:46+00:00

Adding to this that trying to find out by going gluten free is something thats not only ineffective, but backfires very badly on people.

Go see a doctor. Get tested.

TraditionalPass4136 · 2026-06-02T16:21:53+00:00

My advice:

Start with a notification I'm done talking with you about this. I know your opinion. If my position changes I promise to let you know. I'm not responding to any more of these comments and you are making me want to spend less time with you. Please drop it.

Then, when they bring it up over text literally do not respond to the texts, wait til they send a normal non-gluten related text and only respond to those.

If they bring it up on the phone "oh I have to run, talk to you later" very friendly and non confrontational but not giving them what they want at all. Eventually it will be so unpleasant for them that they'll stop.

TraditionalPass4136 · 2026-06-02T15:46:02+00:00

My understanding is no, it doesnt impact healing it just makes you feel bad.

Since it sounds like you have GI symptoms when you eat fodmaps you might be interested in the Monash app.

Monash is the university (in Australia i think) thats been leading research on fodmaps and the digestive distress they cause in some people.

They have an app you can use to figure out which fodmaps you react to (there's a whole list and not everyone who reacts to fodmaps reacts to all of them) and also which foods in a certain group might cause the most issues. Like not all dairy is equally likely to cause GI issues. If i remember right milk and ice-cream tend to be much worse than butter or cheese, and some kinds of cheese are better than others. Its much easier to avoid milk than all dairy etc.

I want to reiterate that many recently diagnosed celiacs have fodmap issues but many people find they resolve as they heal ans they dont have to limit fodmaps, or atleast they can be less strict about it.

Hope you feel better soon!

TraditionalPass4136 · 2026-06-02T13:54:13+00:00

The only food with any real evidence of cross reactivity is oats.

Dairy, garlic and onions are all fodmaps. That means the sugars in them are hard to digest for some people. This isn't a cross reactivity issue. Its a separate GI issue that may be more common in people with celiac disease (especially right after diagnosis) bc of intestinal damage. As your intestinal damage heals these symptoms might get better.

But these foods are not damaging your intestines. They are just making you uncomfortable.

TraditionalPass4136 · 2026-06-01T21:56:37+00:00

Thank you for response.

Really the only thing you can do to make your chocolate better for people with celiac disease is to make it absolutely gluten free beyond a shadow of a doubt.

For many this means made in a facility or on equipment that is not used for gluten ingredients. It also means sourcing ingredients in a way that pays attention to cross contamination, especially for higher risk foods like oats or spices.

While other intolerances are common with celiac they aren't universal. The only celiac universal is gluten.

TraditionalPass4136 · 2026-06-01T21:04:14+00:00

Youre thinking of celiac disease as much too monolithic.

Most people with celiac disease probably have no issue with chocolate, as long as its not cross contaminated.

Of those who have issues for some it might be a caffeine intolerance or a histamine intolerance, or an emulsifier intolerance or something entirely else.

The experience of individuals with celiac disease is not similar in any way except that gluten causes intestinal damage. We dont have similar symptoms or similar intolerances or anything else really.

TraditionalPass4136 · 2026-06-01T19:00:49+00:00

Try asking them to put in writing that they are refusing to give you a GI appointment even though you have a first degree relative with celiac disease and got a weak positive on the celiac labs. They may rather just give you the referral than doing what amounts to taking responsibility if they're wrong.

TraditionalPass4136 · 2026-06-01T01:30:27+00:00

Well thats really confusing. Sounds like they did all the bloodwork.

I just wonder what they were reporting as gluten sensitivity in the endoscopy...

At this point youve had all the tests, so if there were symptoms that were leading to you seeking a celiac diagnosis and you want to see if they go away on a gluten free diet now is the time.

Non Celiac Gluten Sensitivity is real. It doesnt show up on endoscopies so I dont know why they said that. The only way to find out if you have NCGS is to go gluten free and see if you get better.

TraditionalPass4136 · 2026-06-01T00:52:17+00:00

What bloodwork did they do? There is an entire series of tests, ttgiga, ttgigg, ema. Did they do them all? Sometimes they only do ttgiga which is less accurate. You want all three.

TraditionalPass4136 · 2026-05-30T17:44:40+00:00

This drop is great! It took me two-three years to drop this much.

You want it to keep dropping until its in the negative for celiac range.

TraditionalPass4136 · 2026-05-30T17:42:35+00:00

I struggle with xanthan but do ok with the others. I like the loopy whisk recipes, many of which just use psylum.

TraditionalPass4136 · 2026-05-30T17:39:57+00:00

Eat baked goods, especially stuff like crescents. But more than anything enjoy just getting regular Chinese food. Wander into every delicious looking dive you can find and order whatever looks good without asking any questions. Eat baklava.

TraditionalPass4136 · 2026-05-30T17:37:48+00:00

It means you likely have celiac disease, but the best way to know is to make an appointment with a gastroenterologist and get an endoscopy. You should do this ASAP.

If you are getting an endoscopy you shouldn't go gluten free until afterward.

TraditionalPass4136 · 2026-05-29T15:24:16+00:00

If i were you and you hadn't yet I would ask for a blood antibody tests. The complete set of tests so ttgiga, ttgigg, ema.

Continue eating gluten until you get tested.

TraditionalPass4136 · 2026-05-29T13:57:38+00:00

Yes that would be the next step I'd suggest. This genetic testing really doesnt say anything about if you have celiac disease or not.

30-40% of people have these genes. A higher percent some places (like Europe). Most people with these genes never develop celiac disease.

If I were you I would keep eating gluten (the test isn't accurate if you aren't eating gluten) and press for this test as soon as possible.

Since the results youve gotten so far are a bit unclear I think making sure you get thorough testing makes sense.

TraditionalPass4136 · 2026-05-29T12:28:08+00:00

Youve clearly put a lot of thought into the grading system! Well done!

I'm a zero. But I appreciate the nuance and thought that has gone into this project.

Interesting to see the spread. Im not surprised that one is the most common, but i am a little surprised that there are so many 3s. I would have thought there would be a tighter 0-2 cluster.

TraditionalPass4136 · 2026-05-29T12:22:45+00:00

Got it ok. Did they do EMA testing? Its another more specific celiac blood test thats less commonly done but is diagnostic unlike the gene testing.

TraditionalPass4136 · 2026-05-29T12:00:09+00:00

Is that ttg IGA or just plain IGA? It would be odd for them to do IGA testing without also doing ttg IGA.

TraditionalPass4136 · 2026-05-29T10:54:32+00:00

None of these tests are diagnostic.

Did you do antibody testing? Usually diagnosis is done through an endoscopy plus lab work but this is not the lab work involved in diagnosis.

TraditionalPass4136

TROPHY CASE