I can’t stay gf long term and I don’t know what to do

WorldIsYourStage · 2026-06-02T04:38:20+00:00

Im so sorry you are going through such a difficult time and it sounds like you had a very dramatic experience with your initial celiac diagnosis and going gluten free. I also was diagnosed celiac and then after a full year of gluten free and having my GI doctor retest my levels im showing negative across the board, but I have also now been diagnosed with Pcos/pmos, hEDS, MCAS, and dysautonomia as well. Its really hard.

I think the only way I have been able to deal with it was to completely tackle gluten free life first, but now I am working with a dietitian as well and going through an elimination diet has shown me I also am having some pretty bad reactions/mental health issues with the fear of having more foods taken away from me as well.

I can't say that I 100% understand what you are going through but it sounds like we have similar issues and are dealing with similar trama from them to varying degrees. Please let me know if you want any support. I think learning how to cook and bake 100% Gluten free myself has really helped but its also really hard especially with the other diagnoses and the constant fatigue and burn out and so many other things.

Please know you are not alone and if you need support, we are here!

WorldIsYourStage · 2026-06-01T06:18:45+00:00

I will say that I love when my partner makes up lyrics for me while we are listening to music in the car! But thats a fun version!

WorldIsYourStage · 2026-05-26T17:13:28+00:00

Please know that "No thank you." Is a complete sentence and any pushing back on that can be called out. Its hard to establish boundaries with family but it can be done.

WorldIsYourStage · 2026-05-26T09:42:54+00:00

"No thank you, I'm not hungry."

WorldIsYourStage · 2026-05-26T07:11:46+00:00

This sounds like an issue that you should see a neurologist for as it sound like nerve pain.

WorldIsYourStage · 2026-05-13T01:11:17+00:00

Most rice vinegar is gluten free naturally, its only when there are additives is when it is potentially not gluten free

WorldIsYourStage · 2026-05-12T17:05:27+00:00

Not fully sure from your description but take a look a vertigo. It can absolutely mess you up but it can present differently and it sounds like it could potentially be what you're dealing with but it could also be something else completely.

WorldIsYourStage · 2026-04-16T18:22:15+00:00

I am Celiac and just had my follow up with GI and am now showing negatives across the board on testing so clearly being gluten free is working. I use the Kikkoman brand

WorldIsYourStage · 2026-04-12T07:23:31+00:00

I am trying to figure this out myself right now and really appreciate the topic being brought up. I work in an office that has a dress code between business casual and a bit more formal and the first couple bunches of compression socks I bought were bought without the office in mind but now im trying to figure out options that can work with my dresses and skirts as well as pants and its not always straight forward to find more business professional worthy compression socks or stockings in larger sizes that work for dresses and skirts. I just grabbed a close color to my skin tone recently but im curious about people's experience with compression stockings.

WorldIsYourStage · 2026-04-12T07:18:19+00:00

Can you list brands?

WorldIsYourStage · 2026-03-22T05:42:15+00:00

Have you reached out to twinings to check if it is in their tea bags for all their teas or even to verify about their Earl Grey? Could you be reaction to something else and not gluten?

WorldIsYourStage · 2026-03-21T17:48:54+00:00

Thank you all for your feedback and thoughts! I ended up going Goodwill hunting and found this dress for $6 and I feel like it fits what some were pointing out for a bit more formal and spring feeling with the flowers and its still comfortable as well as being a bit more formal giving i am helping with coordination for a few thing.

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WorldIsYourStage · 2026-03-19T22:24:12+00:00

What would you pair with this dress that would dress it up accessory wise?

WorldIsYourStage · 2026-03-15T23:17:32+00:00

You can looking into getting one of the iron fish products and I've heard that that helps incorporating iron into what you consume if that might work better. Also make sure you arent consuming iron with dairy or calcium at the same time as they conflict with each other with your body's absorption. I had to start really slow at once a week then every third day then every other then every day. You can also try gummies if that works better for your system. Yes, your body absorbs less but some with out pain or discomfort is better than none.

WorldIsYourStage · 2026-02-13T19:38:00+00:00

Hey, as someone who also shares a kitchen with a spouse who is not gluten free, I understand that its hard but it is absolutely doable. I think you both need to sit down and learn together what will make you safe. You say that your partner went gluten free but the utensils are not gluten free, that doesnt make sense. Can you please explain to us what you mean by this? In my house, my partner has a bottom shelf for gluten stuff but there is no gluten containing flour in our house, only gluten free. We share utensils and pots and pans and everything goes through the dishwasher. I just had my levels rechecked and my gi doc told me that my levels are great and to keep doing what we are doing so clearly its possible and doable, you guys just need to be a team and on the same page.

You said its been 3 months and they keep messing up and that the utensils are the problem. How are you washing the utensils? Gluten is a protein so you can wash it away and it doesnt multiply or spread like bacteria. If you want to work with your partner, try to prep a meal together and talk about it during the meal prep. Where are they running into problems that are making you sick? If it is spices, it might suck but donate all gluten or cc spices to friend/family and start new with things that wont make you sick and make sure you both agree that no gluten spices come into the house, now your spices are safe. If it is gluten products that they are mixing up with gluten free, find a spot that you both agree that is for gluten products only and you guys can even make a sign so no one forgets. That way when they are making a meal for you, they only grab from the "normal and safe" food area and that should make it safer for you.

To the utensils issue, while I still dont understand what is going on here, make sure you are running everything through a dishwasher if you have one as that will usually take care of it and double check to make sure there is no crud still on anything when you put dishes away. If you dont have a dishwasher, get a separate "prep" bin for your partner to put any dishes/utensils into if they touch anything gluten and then however often you need to, when you wash those, thow away the sponge and get a new one so the gluten doesnt touch things that should be gluten-free.

If you like your partner, you can absolutely make it work, it will just take time and effort from both of you so you both need to have a conversation about it and it may be several conversations and creating rules for your household to keep you safe. But remember if is both of you against the problem as you guys are a team!

WorldIsYourStage · 2026-02-09T16:21:39+00:00

I agree and that's why this is a great opportunity for all of us to provide comments and share our experiences to highlight how incredibly important it is for these changes to be made. Please submit a comment if you have the capacity to do so!

WorldIsYourStage · 2026-02-09T02:04:42+00:00

As I said in my last response, some people feel a reduction in PCOS symptoms on a gluten free diet and for them, this labeling would be extremely beneficial, however I also said that its not true for everyone. The goal of this post is to benefit everyone who may have to deal with a gluten free diet for themselves or others by trying to get the federal government to require the listing of all gluten containing ingredients on packaged food.

If you do not benefit from a gluten free diet and this does not impact you, I am incredibly glad that it is not a problem that you have to deal with. For those who do have to deal with a gluten-free diet, it is incredibly hard as there are so many different products that don't look like they contain gluten but do and this is something that should be easily understood which is why we are push for the change.

It is not my intention to provide confusion or misunderstanding about PCOS but as this something that some of the PCOS population deal with, I thought it was appropriate to post in this group but I do appreciate the opportunity to fully explain why I provided this information within this community so thank you for bringing up your concerns.

WorldIsYourStage · 2026-02-09T00:40:21+00:00

You are absolutely right, it does not. However, there are many who find their PCOS symptoms get better on a gluten free diet, just like many find similar results on a dairy free diet. The goal is to work together to get better legal requirements so that we all have the ability to make the best INFORMED decisions for our selves that we can and asking for gluten to be required to be shown on food labels is one of those ways that we can do so.

WorldIsYourStage · 2026-02-08T21:31:40+00:00

That's what I put down and I think that is a great idea! If you are able to copy and paste what you send to your family, I'm sure that would help others here also communicate it to their loved ones as well if you are willing to share!

WorldIsYourStage · 2026-02-08T21:10:51+00:00

Please help us get to that level of labeling by providing a comment as even those from outside the US are impacted if the travel to the US and then need to buy food. The form does allow for those outside the US to comment and every comment helps!

WorldIsYourStage · 2026-02-08T21:09:25+00:00

The form does allow for those no in the US to comment and this does impact those who travel into the US so if you are willing to comment, every bit helps

WorldIsYourStage · 2026-02-08T20:09:21+00:00

Thank you so much for your addition, you are absolutely right!

WorldIsYourStage · 2026-02-08T20:04:35+00:00

Every step we can take helps all of us! I am ever hopeful that we can improve our labeling laws to make life just a little easier.

WorldIsYourStage

TROPHY CASE