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Wanderinglumos

1y ago

Going gluten-free for POTS and hEDS

Does anyone have experience going gluten free to help with GI symptoms from POTS and hEDS? My doctor recommended it for the stomach pain and GI symptoms I’ve been having. I’m hesitant bc it’s so expensive to buy gluten free and I’m currently not working bc of my pots and eds.

Your answer

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Bijoux_bean22

1y ago

It’s not a bad idea, but make sure to get an intestinal biopsy for celiac with 13+ samples first. Being GF can heal you intestines just enough. It happened to me, and because of my Mast Cell I am VERY allergic to anesthetics. We can’t try again even if we wanted to. It’s just easier to live my life like I have celiac at this point.
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Belugabear

1y ago

Hi! So being gluten free helped my stomach for sure, but I also either have celiac or a gluten intolerance. From what my doctor told me, if you tolerate gluten it won’t make a difference. It might be worth trying for a month or so and then adding it back in and seeing what happens, if that makes sense! For someone without an intolerance or allergy or celiac, it won’t do anything. But having an issue with gluten is super common so if your doctor recommends it it might be worth a shot!
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CriCri

1y ago

Also have you looked into the Cusack Protocol? I just started it a couple of weeks ago but already with all the probiotics I can start to feel a difference. Fingers crossed my symptoms will continue to improve 🤞
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Wanderinglumos

1y ago

I’m so glad it’s helping your symptoms! I hope it continues to. I haven’t heard of it before but I will look it up!
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MamaZC

1y ago

My Dr just had me go on an antiinflammatory mediterrean diet as well as gluten free. So I am minimizing sugars and eliminating white flours including gluten free white flours and processed foods. We will see how it goes, ill let you know if I see a difference. Also I have been gluten free for 15 years so if you have questions let me know.
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Wanderinglumos

1y ago

thank you! I will definitely reach out 🤗
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CriCri

1y ago

Hello 🤗 yes going gluten free helped me massively. It doesn't have to be expensive if you stick to the naturally gluten free foods such as oats, potatoes, rice etc. There's a lot out there xxx
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Wanderinglumos

1y ago

thank you. That is a good tip. It feels overwhelming to try and start but it seems like it may be a good next step to try
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Alfubet

1y ago

Yes! It’s extremely effective. I have found it’s saving me money cause I’m not buying a bunch of snack foods anymore. The trick is to not buy GF replacements of everything. Eat foods that are naturally GF, like meats, nuts, seeds, fruits, and veggies.
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Wanderinglumos

1y ago

thank you! It feels overwhelming to make such a significant change but my doctor seems to think it could help.
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Alfubet

1y ago

Feel free to message me if you have any questions!
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Ouchlicia

1y ago

yes I actually have mcas too and developed an allergy to gluten, which started with stomach pain & GI symptoms and progressed to other reactions such as my throat swelling. (Didn’t realize it was gluten causing this until this and I had eaten a very glutinous meal). I started feeling better almost instantly & feel worse when I eat gluten. Bc mine is more of an allergy I’m not sure this is helpful but when I started I only did a trial and ended up feeling better… you could attempt it for a period of 2-4 weeks and gradually add it back in to see if you were feeling better without it. GF is VERY expensive so I feel you, but I definitely recommend buying GF flour and cooking for yourself, it’s easy to make that swap & not as expensive.
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Wanderinglumos

1y ago

thank you for your response! That’s a good idea to try it for a few weeks and see if it helps. I haven’t noticed any triggers for my symptoms but that could definitely help me know if it’s gluten.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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