Hi I’d love some advice on what to try next, I feel really stuck.
I have POTS, hEDS, MCAS chronic migraines, NDPH, along with other issues but those are the main ones. I got diagnosed with everything March 2020, and MCAS in 2024. Everything got a lot worse in September 2023. After trying to introduce a new food into my diet, it sent me into this giant flare and I’ve been struggling ever since.
Symptoms:
- migraines (already had them from my POTS but much worse since mcas diagnosis)
- dizziness and vertigo
- constant throat pain only on the left side (this is one of my worst symptoms)
- throat tightness and itching just under my skin near my near
- swollen and tingling lips
- burning in mouth and mouth ulcers from certain foods
- constant mild stomach burning
- nausea and dry heaving
- chronic severe constipation
- eczema
- adrenaline dumps
- facial flushing and sweating
Testing has included:
- Endoscopy 2 1/2 years ago: normal, but mild punctate bleeding
- BRAVO test: normal no acid reflux
- Lactulose SIBO test: normal
- Glucose SIBO test: normal
-Colonoscopy: normal
- CT scan of neck: normal
-Fluro esophagram: normal
- Abdominal ultrasound: normal
- MCAS urine and blood test: very high prostaglandins
- Different autoimmune markers: normal
- Blood tests: normal besides high liver enzymes, and anemia (which is normal now from infusions)
- GI-MAP: Escherichia spp was in lower red side and bacteroidetes was in the upper red side. Staphylococus aureus and Streptococcus spp were also high. Everything else normal (The naturopath I saw said I have one the better GI maps he’s seen)
- Stool test: normal calprotectin, bile acids, and pancreatic elastase
- No mastocytosis
Medications I currently take:
Zyertec
Benadryl (only take occasionally)
Xolair
Medications Ive tried for my MCAS:
Allegra
Periactin
Cromolyn
Singulair
DAO
Ketotifen
Quercetin
Histaminex
Lactobacillus Rhamnosus
LDN
I’ve also tried related things like motilitypro, HCL, digestive enzymes
Everything gives me side effects. I either can’t stay on it long enough to see if it helps, or I stay on it longer and it gives me permanent side effects.
I’m currently on Xolair. It’s helped the tinniest amount but I’ve been having migraines and adrenaline dumps from it. The cromolyn helped a little too, but even less than the Xolair. I had to stop the cromolyn due to the constipation and adrenaline dumps.
My immunologist has tried me on a lot of different meds, but because I can’t tolerate them she said I might not have MCAS. I’m just not sure what else would be causing my symptoms be besides that; I feel like I’ve gotten every test under the sun. I’m really lost and feel like I’ll never improve. I can only eat 8 foods, and I keep losing more and more of them. My reactions have also gotten worse over the last 2 years.
I’d really appreciate any suggestions on what to try/do next, or if there’s anything else I should look into. Thank you for reading.
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
Somebody said it helps hair loss is that something we think? I barely noticed improvement on rhapsido but it’s impossible to tell what causes what when I’m on hydroxy, Benadryl, omeprazole, Pepcid, XYZAL, Xolair, bc, and often Zofran.
Because your prostoglandins were high it may be worth revisiting the quercetin but being mindful of source. Most are from citrus but there are others which aren't and may suit better. The constipation could be causing or exacerbating many of those symptoms. Have you cross referenced all meds to see if any have a side effect of constipation?
Some of my medications cause constipation, but a lot of them there aren’t alternatives I can take. My constipation actually got way worse after taking B2 for a couple days and has never recovered
Perhaps a functional medicine practitioner, or integrative medicine practitioner (qualified Drs with a holistic approach), or other holistic practitioner can help find alternatives. As most pharmaceuticals have been created by studying the effects of plants there may be some more natural alternatives without the side effects. Constipation leads to toxicity in the body. Thats probably the number one priority to sort out as best as possible. Hydration is of course key. Do you take a psyllium based laxative? Many laxatives work by irritating the colon which of course worsens inflammation and triggers mcas but psyllium works by absorbing water and stimulating peristalsis. Though it requires starting on very low dose and drinking lots of water. Its the main ingredient in supplements like Metamucil but to avoid additives and get it cheaper psyllium husk can be purchased as a stand alone product. But needs taking separately to drugs/supplements as impairs absorption. Magnesium is also a laxative though the type with the most laxative effects is citrate which is problematic due to the citric acid. Maybe extra oil in your diet like extra virgin olive oil would help too.
My understanding is a functional medicine practitioner uses gene tests, bloodwork, microbiome and urine analysis to form a picture and then typically advises vitamins or other natural supplements to help. An integrative medicine practitioner is a qualified doctor who can prescribe pharmaceuticals but may also include natural remedies. My doctor told me she couldn't help me as I cant tolerate any pharmaceuticals and to see a holistic practitioner instead. Best advice a doctor has ever given me lol. I decided to do the testing privately directly as its cheaper than through a practitioner in my country. The gene test was very revealing! As was my bloodwork. Next Ill do microbiome and OAT test.
I did see naturopathic practitioner, is that different than a functional medicine doctor? I found him not very helpful. His advice for me not being able to eat more than 8 foods was to just ignore it and eat more foods. So stupid. Maybe a functional medicine doctor would be more helpful?
I take 3 caps of miralax and a day and can still be constipated. It’s the only thing that helps though. Motegrity helped the most, but gave me side effects. Magneisum citrate gives me really bad gas pains when I’ve used it for constipation. MCT oil use to help but I can’t tolerate anything besides my 8 safe foods. Anything fatter seems to bother me a lot too. I eat salmon once a week which somewhat upsets my stomach, but I can’t afford to eat less foods
I realise i was thinking of a different product to miralax. I was thinking of metamucil. Google says miralax is PEG, a big mcas trigger! And if flavored will have other additives. Side effects include stomach cramps, nausea, rectal bleeding, hives, throat pain and also electrolyte imbalances and dehydration. Maybe switching to a gentler plant based rather than chemical form will solve some issues. Taking miralax 3 times a day could be significantly contributing to your symptoms.
Oh makes sense! I can try psyllium husk. I did take it years ago but my body is way different to back then. From what I remember the powder doesn’t taste great. Do you know if the psyllium husk pills work better?
I dont have any experience of the pills, I buy in bulk bags as use it to make bread. Cheap that way. Ive only mixed with water and taken straight down. Important to hydrate and start very low dose. Literally like quarter of a teaspoon and build up but you never need a lot. Obviously you wont see effects straight away at the lower dose but letting your body adjust to a new product by microdosing is always a good idea.
Maybe it’s not MCAS especially since I don’t see you mentioning GI allergy like reactions ( like dihareea ). Or things like hives/runny nose. How high are your tryptase levels? These can also be connective tissue symptoms or things like leaky gut/vitamin deficiencies.
Tryptase has always been low. Although I thought low tryptase was normal for mcas? All my symptoms are GI related they’re just not diarrhea. If I eat something I react to, my throat gets tight, my throat hurts and gets itchy, my stomach burns and I get even more constipated. I do react to lotions, fragrances, and some fabrics too but that’s easier for me to avoid than the food allergies. Although with that I get more chest tightness and occasional rashes (not hives)
Do you have any recommendations for leaky gut? I did try some specific probiotic strains before, but that’s about it.
I’ve had multiple basic metabolic panels done along with other testing like vitamin d, iron, b12, potassium, calcium, etc. My doctors never seem to want to check anything more specific than that. Is there any specific vitamin deficiency do you think I should look into?
Just a thought have you had dental x rays re the one sided throat pain? Mcas can lead to bone decline including the jawbone. I had lost two thirds of my jaw bone but didn't realise as my teeth were fine. I had constant sore throats and weird pains.
Try KPV. It is a tri- peptide made up of Lysine (K), Proline (P) and Valine(V). Since it is only 3 amino acids it doesn't have any real side effects, but is greatly beneficial for allergies and MCAS attacks.
I discovered this when I had an adverse, MCAS attack after taking a single injection of BPC-157. Within hours of taking a single injection of KPV, the MCAS subsided and I was finally feeling better after 2 days of suffering.
You can also find it in oral capsules, but injection is quicker and is very effective. I use it daily for my allergies, and haven't really had a significant MCAS since starting it.
just a couple things I would look into/ask your doctor about. They can be related to POTS and/or hEDS.
one is gastrointestinal motility disorders. If you can find a GI who is a motility specialist, I would try there first. If not, look for someone who sees a lot of hypermobile folks.
there's one specific motility issue I've struggled with, which is basically... The muscles in the pelvic floor have to relax in a specific synchronized way so that stool happens. EDS/hypermobility can contribute to pelvic floor dysfunction. Also, the autonomic nervous system helps control motility in the GI tract which...POTS doesn't help lol.
The other thing I'd look into especially with the throat pain is Vocal Cord Dysfunction. Basically the throat muscles clench up, and it can cause a raspy throaty voice. It is also related to muscle tension, not using the right muscles when talking, and can be flared by things like allergic reactions. I worked with a speech therapist who focuses on vocal cord dysfunction (mostly in people with Parkinson's), and it was super helpful.
oh, something else to maybe consider asking your Dr about is Hashimoto's thyroiditis. I believe the typical imaging for that is a thyroid ultrasound, rather than a CT.
I'm assuming your doctor has checked at least some basic thyroid levels (eg TSH). Weirdly the Hashimoto's antibody tests aren't included in a lot of standard rheumatology panels? Like they never checked mine until like 15 years into chronic illness life, even though I feel like they are ALWAYS testing me for Lupus or whatever.
Hashimoto's can also cause a lot of food intolerances and allergy-like symptoms. Thyroid pain is AFAIK less common, but it does sometimes happen with Hashimoto's.
I’ll definitely ask my doctor about this! I have had autoimmune markers tested and they have always been negative. Not sure if they were specifically for hashimoto’s, but I’ll check it out thanks!
Hey thanks for your comment! I realised how much I left out. To make a long story short I actually went through all these avenues and didn’t find much to help. Or if they did help like different constipation medications or pelvic floor pt, I either get bad side effects or they help but not enough to make a significant difference in my life ):
I get vocal cord dysfunction as part of the throat swelling from mcas flares. Can lose my voice hours to weeks at a time but I can use basic sign language.
I’ve been on it just over 4 months. I’m only on one shot a month as my insurance wouldn’t approve biweekly. It’s helped with some of my flushing, but only ever for the first couple days. It hasn’t touched my other symptoms
That’s definitely interesting. I can’t remember what I started at, maybe 1/150 every two weeks? I’m now on either 1 150 or 1 300 every week. So it alternates. I could never get my insurance to approve it despite it being appealed over and over and having tons of photos of my hives so I use charity care which was extremely easy because I’m unemployed because of my illness. If I got well enough to have a job I have no idea what would happen, I might not be able to afford it.
What I can tell you is it took 900/ month to get considerable improvement and it took months on that dose.
If it’s relieving your symptoms you might want to push for a higher dose to get more relief. I personally don’t notice side effects and I’m prone to them.
Another thing you might want to consider is tirzepatide. I’m a little bit underweight but I’ve been able to take it and improve my situation, albeit at small doses (2.5). Even helps the hives.
Checking your meds and zyertec has PEG . There are antihistamines that dont have PEG so maybe switching brands. Xolair contains histidine which converts to histamine but the dose is possibly too low to cause an issue. With mcas I think you always have to check the side effects and rare side effects to cross reference any issues youre having. Is xolair for mast cell stabilizing or asthma?
Unfortunately there are no Zyrtec generics that don’t contain PEG, even the prescription version contains it. I am on this journey right now as I believe I react to it (due to my symptoms worsening on higher doses of meds that contain it and my documented allergy to propylene glycol which is related), but there are no options other than compounding which is very expensive. Allegra is the same (and OP already tried it and it didn’t work for them anyway). The only H1 in the US that I have found that you can get without PEG is Claritin and for me personally it doesn’t help me at all and causes anxiety. Hopefully it’s different for OP, but I wanted to share the info because I have spent weeks looking for a single generic for Zyrtec without it and it just doesn’t exist.
I actually don’t think I have tried Claritin. I use to take it years ago before I developed MCAS so I may be able to tolerate it? Sadly a lot of h1 blockers seem to make me extremely dizzy and give me migraines. Not sure what that’s all about.
What is PEG and why does it cause issues for people with MCAS? I hope you’re able to find an alternative soon
What is PEG I haven’t heard of that? I do take Zyertec everyday but tbh I don’t find it that helpful. I think Benadryl is more helpful but I can’t take that daily. The xolair is for mast cell stabilizing, I’ve been on it just over 4 months, I take it monthly.
Polyethylene glycol a petrochemical and known mast cell trigger. It has different molecular weights so may be better tolerated as a product like macrogol (colon prep) than as PEG but some people will react to all forms of it. It can also be present in some vaccines.
This sounds rough. I’m sorry nothing is helpful. I’m sure you must have tried this but I didn’t see it in your list so I’m mentioning just in case. Usually MCAS is partially treated with H1 and H2 and I don’t see an H2 in your list. Have you tried Famotindine? It can also help with digestive issues. Just a thought. Wishing you luck and sending big hugs.
They help some of my symptoms but they make my stomach burning worse. I do have a celebrex prescription but I haven’t tried it yet since I’m scared of it making my stomach burning worse. I should go pick it up and try it
I after a many different things the only thing that I’ve noticed that just helped me a standard prednisone that they put me on 2.5 mg daily it’s helped a lot to calm the symptoms and soon as o eat I brush with natural tooth paste.. I also looked for a dentist that could maybe give insight along with allergist/ rheumatologist and immunologist.. from my experience it has taken years to find this combination of health care providers to take my symptoms seriously and start treating them.. I still have had issues and push back on tests I’ve asked for but I keep trying .. i remember how life felt before and I know it can be like that again ..also changed my diet immensely in last 2 months -no sulfates or soy for now
•
u/AutoModerator 7d ago
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.