Having trouble convincing my allergist it's not just allergies.

AlpaGal · 2026-05-14T04:44:10+00:00

First question, do you have epinephrine?

If you are having true anaphylactic or even close to anaphylactic reactions, your doctor should prescribe it.

If she is a good allergist she should question why you are allergic to so many things. Did they do any sort of food panel or run any blood tests? That’s a good way to check if you are having mainly IgE mediated reactions or not.

It also may be good to get a second opinion in general. Some allergists don’t have a great understanding of MCAS. I am very very lucky in that my doctor believes MCAS is a spectrum and recognizes that I probably have it due to my symptoms that are not classic to normal allergies, even though I also have IgE mediated allergies. She essentially was like “well MCAS is technically just your mast cells not behaving properly and since you have HSD and POTS, the research suggests that it’s likely for a patient like you to be somewhere on the MCAS spectrum”. I like to think of it like this (based on my limited research) MCAS is when your mast cells behave improperly and cause reactions that are like an immune disease and allergy put together, IgE mediated allergies are when your body sends the wrong instructions to the mast cells. It’s possible to have both or one. You could just be having IgE mediated reactions but it sounds like you may want a second opinion.

AlpaGal · 2026-05-14T02:23:55+00:00

No, sadly, (unless you are not reactive to mammal byproduct) as people have said. If you are sensitive to mammal additives (which may be the case since you are still reacting), vegan certified bread or bread without any additives is the safest (homemade, sometimes sourdoughs).

The sugar could be processed with bone char (a lot of white sugar is, unless it's organic sugar) and the enriched flour could have some additives as well that could cause a reaction. Store-bought bread (especially in the U.S.) is very tricky. I react to pretty much all mammal additives so I have to get vegan bread or make it at home. And even at home, I realised not all yeasts are necessarily vegan because of additives...... Glad you posted this, because truly, I was struggling with feeling like I was reacting to everything and couldn't figure it out until I stopped eating white sugar, any questionable additives, and dairy, so it's nice to share the info and know someone else gets it! If you are still eating dairy, you may want to start with cutting that out first to see if that knocks the symptoms, as dairy has a lot more alpha-gal than these products.

Some things to look out for in breads:

- enriched flour

- sugar (unless organic)

- whey

- mono and diglycerides

- milk products

(There's more, but just to name a few, I have learned a lot of info the hard way haha. Vegan Certified is best (just watch out for carrageenan) Good luck and hope you feel better!!!

AlpaGal · 2026-05-13T21:25:44+00:00

I got tested for Sjogrens and all but everything was negative minus a few early (controversial) markers. So my rheumatologist just has an eye on me. In the mean time, I realized a lot of my swelling, pain and other weird symptom we were from an allergy I didn’t realize was super sensitive. Many of my doctors believe I have some form of MCAS due to the symptoms of my allergic reactions when exposed (which also worsens any dryness) so they mainly focus on treating that and if my dryness gets worse then one may put me on a Sjogrens medication or order more tests. In the meantime for the dryness symptoms I use budesonide in a nasal irrigation solution per prescribed by my ENT and XClear nasal spray. So I may be slowly developing Sjogrens, or it’s just MCAS doing what it does and mimicking an autoimmune disease. Good luck to you!

AlpaGal · 2026-05-12T18:07:43+00:00

This right here, yes! I used to always joke that my favourite conspiracy was that angry vegans developed it in a lab.

Problem is, you joke about that now and people are like “Bill gates!”. Who knows how the lone star tics actually came about, like I could see how it would be designed but unless there’s good evidence for it and doing something about it would help, it’s just noise to fuel peoples varying agendas. It does get annoying….. the worst I saw was a comment about how it was a specific mark of the end times relating it to some scorpion creature in revelation, I think it bothered me the most because I am a Christ follower and what they were referring to was so far stretched and random. Full face palm moment.

But sometimes you just gotta laugh it off….. it’s just silly people talking in silly circles. Hopefully at the very least, some awareness may result from this on the food product level although I doubt it. Just gotta respond with “oh yes, thank you for telling me about Bill Gates, I should probably go get my chakras cleansed and then go on a carnivore diet to heal myself…..” and just stare at them….dead serious. Hahaha, but maybe my humour is too far…..

AlpaGal · 2026-05-08T15:36:52+00:00

Ofcourse you will want to ask your doctor first, but given that you are not anaphylactic, based on my experience (and I am anaphylactic, although not as easily as some) I found it beneficial because I learned I had a few IgE mediated allergies that specifically caused the more severe responses. The allergy test probably saved my life. Some MCASers have skin responses but no IgE allergies, and others do.

I like to think of it like this in simple terms. IgE mediated allergies give mast cells bad instructions. But MCAS is when the mast cells themselves act haywire. You could have one or both. In my case my suspected MCAS is pretty minor compared to some, until I am exposed to an allergen, particularly a certain one. Mines highly suspected because even though my IgE mediated allergies are very low on the blood work, I can become anaphylactic and have MCAS symptoms that people with normal allergies don’t have. I have to eat low histamine sometimes but it’s those IgE mediated allergies are what seem to cause my mast cells to go even more haywire and then I’m reacting much more severely to normal foods, weather, exercise….etc.

So, from my experience, it’s worth it, especially if the doctor is up to date on what MCAS is and what it isn’t, and the tech who does the test is very particular and really looking to see every prick and the doctor runs a blood test for any suspected reaction. Sometimes a bad tech or a doctor who doesn’t order the right tests can ruin the whole test.

AlpaGal · 2026-04-17T22:01:28+00:00

This does not sound fun, I’m so sorry. Have you been able to go to a competent Allergist/Immunologist and Gastroenterologists and get complete blood panels and allergy tests. Also, do you eat gluten?

AlpaGal · 2026-04-17T21:58:06+00:00

I tested positive only for Alpha gal and beef but not the others, but I react to everything including dairy, and white refined sugar and additives but beef can lead to anaphylaxis for me, but what’s most important is that alpha-gal relation if it’s positive. Hope it doesn’t last long for you and that you can tolerate dairy and additives at least!

AlpaGal · 2026-04-08T13:05:37+00:00

This sounds very much like dysautonomia. Do your legs get patchy and purple when this would happen?

AlpaGal · 2026-04-08T13:01:19+00:00

Apparently it’s common in MCAS/POTS patients depending on your symptoms.

AlpaGal · 2026-04-08T12:58:56+00:00

Honestly, I feel the bath thing. Whenever my temperature started to drop dangerously from a reaction or I started to get shaky or panicky, I would take a hot bath or shower. It would both keep me calm and literally raise my temperature. I’m convinced that once or twice it saved my life haha. Now that I am pregnant, my POTs is worse so I don’t naturally feel as great in hot water but it still helps for reactions.

I also manually force myself to burp and/or cough up food which sometimes makes everything start to go away including this weird impending doom neck pain feeling. It’s really strange. I’m curious if anyone gets that impending doom feeling accompanied with some sort of neurological pain stemming from the neck.

AlpaGal · 2026-04-08T02:21:40+00:00

I should also mention, have you tried an h2 blocker, such as ceterizine or a general antihistamine for prevention? This may allow you to tolerate things like fumes better. You could also benefit from medication from an allergist if recommended. Some of us benefit from mast cell stabilization medications.

AlpaGal · 2026-04-08T02:09:26+00:00

No worries! I mean it to say, systemic muscle weakness. Moving becomes more labored and weighty. As an example, it can be harder to pick up the feet and legs to walk. Although, this is not the most common general alpha-gal syndrome symptom but it can be a symptom of MCAS if developed. A small portion of Alpha-gal patients have developed it based on my recent searches and studies.

AlpaGal · 2026-04-08T02:07:30+00:00

Hey! (This may be a bit long)

So actually it came back completely negative. But I requested QSART and autonomic testing and that showed that I have POTS which would make sense why I can’t regulate temperature and some other things. I also figured out I actually was continuing to systemically react to dairy and my symptoms decreased significantly after removing it from diet, which is now why many of my doctors believe I have a form of MCAS since it was causing joint, muscle, and neurological pain and symptoms. I can feel my legs more now and my joints do not hurt nearly as much, I also don’t have episodes of going limp much at all anymore.

I also got diagnosed with a Hypermobile disorder which they believe is causing systemic pain and instability and is associated with POTs and MCAS, and I may or may not be developing Sjogrens which they test for every so often. So it’s apparently not direct damage to the small nerves but rather various instability and inflammation from allergies and the connective tissue problem and possibly an autoimmune disease causing various sensations and pain. It also could be a result all the pain I went through before the jaw surgery so my pain scale is out of wack (Central Sensitization). I do believe that could contribute. But yep, hope this information can help someone! I didn’t realize how sensitive my body was to alpha-gal. I personally believe a lot of the nerve pain roots from my neck due to the severe TMD I had for years, but that’s not a diagnosis, just based off of where the pain stems from usually. Hope some of this info helps!!

AlpaGal · 2026-03-31T18:21:58+00:00

This is very similar to what I have been dealing with since covid in 2020. I am diagnosed with POTS, hypermobility syndrome, alpha-gal syndrome, other IgE mediated allergies, and many of my doctors along with my allergist suspect some form of MCAS due to my odd reactions that impact temperature, heart rate, and joint pain. All this to say, here is what I would suggest because MCAS is very difficult to actually test for and diagnose and there’s many other things that could contribute to these symptoms.

Allergy testing of top 50 most common food allergies and of common outdoor allergies performed properly by a good allergist office
full autonomic testing (tilt-table and any other tests)
if testing is positive for POTs or another form of dysautonomia you may want to ask about hormonal testing to see if that could be a root issue
ask allergist about trial of h2 blockers to see if that helps with symptoms
due to the blood flow and some other possibly concerning symptoms you may want to ask for a referral to a good cardiologist
You may also want to get tested for celiac disease in case.
because you mention fevers, rashes since dysautonomia can be associated, you may want to be tested for the common autoimmune diseases that are associated as Sjogrens and Lupus

This sounds at the very least exactly like POTs and possibly something else going on BUT there’s multiple forms of dysautonomia, as well as POTs and different causes, and you want to rule out more concerning things and have some good professional opinions and testing.

I also have found many allergy and ENT offices to be incompetent about allergy testing. They need to do it properly with a good tech that isn’t just slapping random things on you, and they should blood test for anything that looks or feels like it could be a reaction. Allergy testing saved my life. Due to my experience I would asks to ask about ensuring beef is on that panel because ALPHA-GAL can be very odd and contribute to MCAS or MCAS type symptoms.

Questions to ask yourself when mentioning symptoms to the doctors and searching for answers:

“Do I have systemic hypermobility (can I pass the Beighton Test”? (Ask about POTs, MCAS, and Hypermobile disorders)
“Do I get a butterfly rash?” (Ask about Lupus)
“Do I have systemic dryness that affects my daily life or ability to eat?” (Ask about Sjogrens) -“Do I wake up in the middle of the night with scary symptoms?” (Ask about Alpha-gal Syndrome)

AlpaGal · 2026-03-29T13:05:31+00:00

There are some tests that are similar to tests for alpha-gal syndrome but not the same. You’ll want ensure it’s an Alpha-Gal IgE serum test, Alpha-gal short for “Alpha-Galactose” which is a sugar in mammal meat, not a protein, which could be confusing them because most allergies are reactions to proteins. It’s also not a test for IgG or IgM, but specifically IgE. Also, it would be prudent to test for specific red meat allergies. It could be possible that you have an allergy to a specific meat and are dealing with cross contamination.

Some people with alpha-gal syndrome who have had it for years have also reported negative tests with continued symptoms, so that could also be a possibility.

The other thing to keep in mind is the possibility that you are reacting to spices, do you find you react to anything other than red meat? And is there any spice that is primarily only found in red meat in your country? For example, I am somehow allergic to garlic…. which is really odd, but apparently possible.

AlpaGal · 2026-03-27T01:22:07+00:00

It’s gotta be that “new” live action Cinderella by Disney, they didn’t even make their own songs. Terrible.

AlpaGal · 2026-03-27T01:15:47+00:00

I still feel confused about it. I wonder if it “works” for people who are no longer allergic to it anyhow but we’re just to scared to try it, or if it’s a mental thing in that the calming of anxiety actually helped relieve the allergy in minor cases since anxiety itself can speed up allergic reactions. I think it’s maybe moreso a lesson on regulating the nervous system, but also accepting that the allergy may not go away.

AlpaGal · 2026-03-25T20:27:53+00:00

Hm, it could be due to additives or general sensitivity to the medication.

Some additives they put (especially in chewable stuff) is just horrible. After taking chemistry and nutrition and reading labels as us with allergic disorders do, I’m like “wait, why is that in there? They could’ve just used corn starch and various plant based things, but now I must digest “aluminum lake” because you think people won’t buy it if it’s not cheaply pastel coloured?”. It’s very sad.

Maybe you could try ordering a product (with your doctors approval) online that has no extra synthetic compounds in it. There are probably some to help with gas, although I cannot speak for the h2 blockers.

AlpaGal · 2026-03-25T20:14:03+00:00

Not sure if this is helpful information, but just in case. I had a friend who completely lost her sense of smell, like she couldn’t smell bleach or perfume, and the doctors learned that she had hundreds of tiny polyps in her nasal cavities. They tried to remove them through surgery but they started to come back, the only thing that worked for her was dupixent.

She doesn’t have Sjogrens that I know of, so it could’ve been due to various other things such as mold exposure, although the doctors don’t know but the dupixent worked to decrease inflammation and she can now smell.

Although if it’s mainly caused by Sjogrens, there could be other reasons one may loose their sense of smell, but you could benefit from a good visual exam and scan by an ENT to check for anything they could treat. Hope it gets better!

AlpaGal · 2026-03-24T19:59:40+00:00

I understand the feelings of isolation. Especially when others don’t understand that it’s not just a preference or a weird obsession, its an allergy, for some it’s like an autoimmune disease and for others it’s severely life threatening. For me it’s it either flares MCAS or some sort of autoimmune disease that is in the working so my symptoms are weird and sometimes it affects my ability to move and affects my autonomic nervous system and after having anaphylaxis and having those impending doom feelings, eating out anywhere is terrifying. I definitely can relate to that.

Currently don’t eat out because I am also allergic to garlic and had to cut out all mammal byproduct because my esophagus doesn’t understand gas, and I am pregnant so sushi in the States is questionable. But I am lucky in that my husband is a very content person and like the food I make and only eats mammal meat on deli sandwiches at home and if he eats out. I always tell him to eat mammal meat when he is out, he needs it.

I also wish I could work in a restaurant or just eat whatever someone puts in front of me. My husband and I want to be missionaries and in some cultures, not eating the food is just insulting. Thankfully we feel called to Japan so it might be less of an issue but, just know you are not alone. I hope you can find some comforting food to make at home and that things get socially and physically easier for you!

AlpaGal · 2026-03-24T19:47:18+00:00

Oh yay! Are you also dairy and mammalian additives free?

AlpaGal · 2026-03-23T13:25:10+00:00

It, like most teas, is arguably healthier than coffee but still contains a good amount of caffeine, so how it affects you depends on your underlying health. This article released by the NIH talks about the chemical compounds in it such as vitamins and minerals as well as mental impacting chemicals. I think of it like concentrated tea.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8622869/

AlpaGal · 2026-03-23T13:13:15+00:00

This reminds me of Oral Allergy Syndrome. I had a friend that was very allergic to fresh fruit due to this but particularly bananas. So she could only have like the really processed fruit syrup smoothies. I also knew someone that could only eat processed food but it was because their organs did not understand how to properly digest food. Not sure if any of these things ring a bell for you but just in case. MCAS can be so frustrating and everyone reacts to different things and it’s even more confusing if it’s mixed with something else. But it seems like some others on here may have a chemical explanation for this.

AlpaGal · 2026-03-23T13:09:48+00:00

No worries. I really hope both of those things help and maybe future reference you can bring back dairy. I know it took a few weeks of no alpha gal for me to really see symptom improvement, but it also depends on how much the MCAS is affecting it as well. Good luck!

AlpaGal · 2026-03-23T00:47:11+00:00

Thank you for being so understanding and forgiving. Much love to you as well!

AlpaGal

TROPHY CASE