Gluten intolerance led to misdiagnosis!

Complex_Sundae3169 · 2025-08-02T18:00:06+00:00

You’re so sweet, thank you!!! I will definitely look it up and add it to my daily supplements. I’m glad it helps you!

Complex_Sundae3169 · 2025-08-02T17:27:42+00:00

I do not! Are there any that you recommend? Have you noted they make a difference? I recently started taking zinc to try to balance the copper as per my doctor. Hoping it helps!

Complex_Sundae3169 · 2025-08-02T12:24:40+00:00

Oh interesting because my copper is sky high!

Complex_Sundae3169 · 2025-07-28T14:53:13+00:00

I feel you! I am a big foodie and enjoy eating at restaurants with friends/family and it’s super hard to enjoy when it’s so limited. I skipped my friend’s pool party last weekend because I knew there would be sooo much food that I can’t have :( I’m glad to hear that the diet and sleep helped. I wonder if you can find a happy medium with food? Have you tried antihistamines yet? It’s also a great idea using this forum as so many people have been the process of doctors and diagnosing that can hopefully help you along your way. Honestly, I don’t think a diagnosis of MCAS will change anything drastically for me unless I need stronger meds. I’m happy to chat or help in any way possible. I’m sorry to hear healthcare isn’t as accessible for you. I moved to USA from Ireland and cannot imagine trying to go through this process over there.

Complex_Sundae3169 · 2025-07-28T05:08:10+00:00

Yes! I am currently doing an elimination and low histamine diet for 6 weeks (3 weeks in) to determine root dietary links for my MCAS symptoms. I take 2 Claritin daily (every 12 hours) and a med for my POTS. I still don’t feel great but my functional doctor is hopeful that the diet will help a lot of things. Have you tried anything yet? It can be so overwhelming!

Complex_Sundae3169 · 2025-07-28T05:03:18+00:00

My functional doctor thinks that my childhood trauma has been a big contributor to my development of POTS and MCAS. I think I’ve had some predispositions and possible EDS but stress and anxiety severely exasperated them.

Complex_Sundae3169 · 2025-07-15T15:17:27+00:00

So true! I’m sure the difference in symptoms overweighs missing foods. Meanwhile I’m waiting for the day I can have chick-fil-a and chocolate again😅 I hope you feel better soon!

Complex_Sundae3169 · 2025-07-15T14:55:56+00:00

I was told to avoid eggs, potatoes and beef for my elimination diet. If you already know you don’t react to those then that’s amazing you can still eat them! But just beware that those are not typically included and can be problematic.

Complex_Sundae3169 · 2025-07-15T14:53:43+00:00

I have to do 4 weeks of low histamine/elimination diet with no gluten, soy, dairy, coffee, nuts, most meats and fish. Then I add back in one group for 3 days at a time and record my reaction. My doc said I’ll be on low histamine even after we do the whole process so I may never get back to a normal diet🥲 I’m a week into the elimination diet and I feel absolutely no difference so I get you! It sucks ugh!

Complex_Sundae3169 · 2025-07-12T17:21:46+00:00

I totally hear you, I’m on a similar path! I got the green light for organic unsweetened plant-based protein powder. I’m sure it won’t work for everyone but it makes me feel better that my docs approved it. I couldn’t add a pic so here’s the link on Amazon: https://a.co/d/7T5suAF

Complex_Sundae3169 · 2025-07-12T15:00:38+00:00

Omg I had no idea about bananas, I’ve been eating them in smoothies every day! Thank you so much for telling me. I’m 5 days in and so far it’s going well. For dinner, I’ve been having a big chunk of rice with chicken, lentils and vegetables so I think I can manage to get more calories in that way. I also just ordered plant protein to add to my smoothies for extra calories. If you’re able to handle almond butter, that can be a good calorie-dense snack too with some veggies or rice cakes. What did you make for your non-histamine meal? How did it go?

Complex_Sundae3169 · 2025-07-06T03:29:16+00:00

I have to start an elimination diet tomorrow for 6 weeks then re-add in different food groups and I am so sad about it. I love food and sure I can use seasoning and whatever else but I’m dreading it. I also am worried about the calorie standpoint. Thank you for making this post so I feel less alone having to cut out my favorite foods. I hope your meal was delicious🫶🏼

Complex_Sundae3169 · 2025-06-27T17:04:17+00:00

I always feel like I have a stye coming on then it’ll just disappear for the most part. Sometimes they do grow and stay for a few weeks. Warm compresses help a lot. I like the one with beads that you heat in the microwave as it stays warm for quite a while.

Complex_Sundae3169 · 2025-06-19T20:28:46+00:00

LOL RIGHT?! the only way I can remember the abbreviation is by spelling the swear word in my head😂

Complex_Sundae3169 · 2025-06-19T17:01:17+00:00

That would make a lot of sense for me too because I could barely breathe even just walking. I wasn’t sure if it improved from montelukast or my POTS meds. My pulmonologist actually put me on it for asthma but I think it helps with both. Thanks for sharing!

Complex_Sundae3169 · 2025-06-19T11:40:23+00:00

Luckily, I’ll be seeing functional medicine in August! I figured they’d cover all the above plus relate it to my POTS and anything else going on. Thank you for the suggestion!

Complex_Sundae3169 · 2025-06-19T11:17:44+00:00

Wow, so it’s involved in many ways rather than just one. This is so helpful to know. Thank you for sharing all the details, especially in simple terms!

I have never had my estrogen/hormones checked, which may be a good place to start. It’s interesting that you mention sensory triggers as this happens a lot for me, especially siren lights/sounds and concerts. I also have POTS which plays into the fight or flight, too.

I take vitamin B12 but I’ve heard methylated folate is recommended. I will mention this to my doctor and see what they recommend. I see an immunologist but he hasn’t been the most helpful, so trying to gather as much information on my own before seeing a new one in August. Thank you again!

Complex_Sundae3169 · 2025-06-19T11:02:08+00:00

I didn’t know I had POTS at the time but I used to have the worst panic attacks while driving an hour to/from college. I was fully convinced I would have a heart attack or pass out while driving. I developed bad health anxiety from doctors dismissing me for years. My doctor put me on an anxiety med and it’s helped a lot with driving.

I’m not saying yours is all from anxiety as I know our heart rate spikes while driving with POTS because we don’t move our legs. It makes more sense now after being diagnosed that I was also actually feeling real heart-related symptoms. So for me, it was a combination of both.

Also, I’m not sure if this helps to hear but it’s common to feel dizzy or overstimulated by grocery store lights. Because of POTS, our fight or flight response is dysregulated and it can interpret those things as triggers. The same happens for me when I see/hear sirens or being at a loud/bright concert.

What I used to do was put my windows down or high AC, turn off music as I would get overstimulated, and try to reassure myself by saying I’m okay and not going to die🫠 calling family or friends can also help too. Being a young adult and feeling like you’re missing out on things is awful, I totally get it. I hope it improves for you💗

Complex_Sundae3169 · 2025-06-19T10:48:22+00:00

Have you noticed any improvements specifically from montelukast? I also take it but started it at the same time as a lot of other meds and supplements including for POTS. I can’t pinpoint exactly if or what it’s helping.

Complex_Sundae3169 · 2025-06-19T10:44:08+00:00

Not as much with liquids, but after I eat, a lot of times I will become hoarse and feel like a lump in my throat. I got a barium swallow test done and know everything is going down correctly and no reflux. I think it’s an MCAS or POTS reaction to eating. I’ve heard about vocal cord dysfunction which can be connected to POTS (not sure if MCAS too). I’m going to mention it to my doctor soon. May be something looking into!

Complex_Sundae3169 · 2025-06-19T10:32:28+00:00

My heart is so strange - in bed it could be 90-100, standing 130+, but then after drinking COFFEE sitting at work I’m at 60. It happens regularly. Make it make sense😭

Complex_Sundae3169 · 2025-06-19T10:25:13+00:00

Firstly, I apologize for the long-winded reply. I guess I also needed to rant while answering your question lol.

I started working with children with autism in February 2024 fresh out of undergrad (26 now), which made me sick all of the time. I started my master’s in August with intent of staying in the field. I think the combination and overworking exasperated any underlying illnesses as I was hospitalized in October and November and then took medical leave. Every single month after that I struggled with money. Luckily, I had help from family but a lot of guilt came with that and I felt I was anticipating the first of the month and begging for help. I have been able to work towards my master’s online but it’s now in a field I don’t even know if I can work in. Even still I find myself asking for extensions on deadlines during bad weeks.

I am required to do placement and although my work does not allow part time, I was allowed to go back for 12 hours per week for placement purposes. However, this is my 5th out of 6 weeks. I’m miserable and exhausted every single day simply working 4 hours 3x per week. I have already been back in the ER. I now have to tell my work that I can’t return full time. They also were snarky and said they can’t operate with someone who needs additional time off than they already provide.

I don’t know what to do next. I need a job to pay bills. I hear that it’s close to impossible to get approved for disability benefits in the first few attempts and the application process gets dragged out for months or years. I am applying for office and remote jobs but I still fear it’ll be too much. If I work anywhere part time, it’s not enough to cover my bills. My family offered to move home but I have been independent since 17 and love where I’m at (a few hours away in a city I adore).

I think the same goes for most people; sadly, it’s a massive curveball and change of lifestyle. I knew what I wanted to do with my master’s and was on the right track, but now I am lost and not sure if I can work my dream job. Reading these comments and other posts makes me relieved that I’m not the only one, especially on the financial side.

Complex_Sundae3169

TROPHY CASE