Burning Skin, Burning Mouth, And Fatigue An Hour After Eating

[janiedelite]

I've had this problem since 2008. There are many things that can trigger my burning skin, burning mouth, and metallic taste including stress, talking, heat, or caffeine. But I've been noticing that after eating certain foods I have between 20 minutes to 2 hours of burning issues. These trigger foods include chocolate, cheese, alcohol, overeating, and sometimes I just don't have any idea.

Along with the burning pain, I also get fatigued to some degree (sometimes sleepy and sometimes exhausted), and have a BM (sorry). If I'm really flaring up, I also notice I get flushed and sometimes get usually emotional.

I do have elevated norepi on standing and have high BP, flushing, tachy, nausea on standing. I'm keeping a food diary. My mom has carcinoid syndrome and I've never tested positive in any of my 5HIAA's, CgA's, or CT scans.

I'm seeing an endocrinologist this week.

Any thoughts????

[juliegee]

Classic MCAD stuff. Try a benadryl or zyrtec during the attack & see what happens.

[lieze]

I have this problem too and I always take it as a sign that I'm showing an allergy to a food but I kind of am wondering if that is a false assumption.

If I continue to eat that particular food I then will start in with esophageal spasms that feel like my throat swelling up and really scares the dickens out of me.

The thing is give it 20-30 minutes and the worst of it passes.

It really has made eating difficult for me because I really don't know what my body is trying to tell me.

I am so hungry.

Want to eat desperately and I'm just not sure what I can eat...

Things that I seem to be able to eat safely for a period of time then also eventually trigger this reaction.

With the infusing of the iron and all the horrible things I felt with that it made me question if I'm getting a lot of mixed up messages with foods too and that just putting anything in my system at all has the potential to create reactions.

I'm thinking so but obviously my goal is to eat safely.

[Godsgal]

I agree with Mack's mom!!! You could also try claritin or allegra too if you don't like the drowsy factor of the meds Julie mentioned.

[janiedelite]

Benadryl does help quite a bit, but it's the only antihistamine that actually helps. I take zyrtec day and was taking zantac for a few months with it but didn't have any improvement (I took both twice a day). And to complicate things, benadryl only helps if I take it occasionally. Neurontin has helped with the burning as well.

My mom has this with her carcinoid syndrome and is on neurontin for it as well. Hers has been attributed to excessive serotonin which can cause irritation of the small nerve fibers.

I agree that there is a histamine component to this issue. When I'm burning really badly, my whole body appears flushed. Lots of carcinoid patients use benadryl for this type of burning as well, and carcinoid tumors can secrete histamine.

I did a 24-hr methylhistamine urine test at Mayo which was negative (the neuro didn't know to run the 1-time sample). I had a skin biopsy that I had the derm stain with tryptase and I'm negative for masto.

I do think that there is elevated histamine in my case, but I wonder what exactly is causing it since simply taking the antihistamines just doesn't cut it.

[janiedelite]

I forgot to add that taking paxil has seemed to worsen this burning issue somewhat. I'm going to try to wean off of it and see what happens.

[lieze]

The periactin is both a histamine and serotonin blocker. My allergist was suspecting carcenoid in my case I think you and I talked about it.

I only tried the periactin once but it was very potent.

If for whatever reason you would decide to ask for it take a tiny tiny bit.

It dried me up to the point I felt stuffy-I really didn't like that part but the other effects were pretty effective.

[janiedelite]

Thanks, Lieze, I never thought of trying that med!

[Katybug]

I agree with the other folks that it sounds like MCAD stuff. I have been researching (since we re thinking that may be my problem too) and found this website last night. I thought it gave a lot of good info.

http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm

[juliegee]

Hey Janie-

Think we've chatted bout this before... Your docs have ruled out mastocytosis (for the most part) but I would guess that MCAD is still on the table for you. It is VERY difficult to catch laboratory proof as the chemicals that are secreted from degranulating mast cells have a very short shelf life. A detailed history, the way you respond to meds, "a unique constellation of symptoms," etc. are all important pieces of the DX. I can't remember when you went to Mayo or which one, but their take on MCAD (and the way they DX) is evolving.

That being said, your Mom's medical history & your similar evolving symptoms are curious to say the least. I would guess that you've been thoroughly screened for carcinoid syndrome...but that's sometimes hard to find, right? Kind of scary with your continuing symptoms. Have any docs ever recommended that you have annual CT's or MRI's to scan for tumors? How about annual blood work? Here's a study that DOES show a genetic component: http://www.ncbi.nlm....pubmed/14629799

I've never been worked up for small fiber neuropathy, but have EVERY symptom. My local allergist (formerly from Mayo) says that mast cells travel on neural pathways- explaining the neuropathies and burning that many of us with reactive mast cells get. These nueropathies are a part of that "unique constellation of symptoms" that I referred to earlier. The bottom of my feet burn horribly at times, as do the top of my shoulders when I'm having a reaction. My lips and mouth also burn which is a direct indication (for me) that my trigger was most likely something I've ingested.

As far as your response to MCAD meds; I'd guess that you haven't found the regimen that works for you- yet. Many have trouble or lack of response from various antihistamines. Trial and error and careful documenting are the keys to figuring out what works for you. Starting small and titrating up is key. (BTW, lack of response usually indicates the dose is too low.) There are also mast cell stabilizers and antileuketreienes that you could try. It would be wonderful if you could find a good local allergist to work with you in finding something that helps.

Prayers for you & your Mom. I have an interesting observation" of everyone on the forum- YOUR symptoms most closely match mine Scary for both of us- huh?

Hugs-

Julie

[janiedelite]

Thanks so much for your input, Julie! I agree that we have such similar symptoms. I also agree that there is a genetic component to carcinoid (although no one prior to my mom has had a problem). But my brother most likely has come down with neurofibromatosis type 1 in his 30's which is linked to carcinoid by MEN 2b (multiple endocrine neoplasia). We've never had genetic screening.

My cardiologist trained under Dr. Grubb and is great. She's willing to try anything. The next appt I have, I'll bring up these episodes and questions regarding MCAD. I'll also talk with the endo about it this week and see if she wants to run tests for carcinoid again (it's been a couple years) and ask about histamine and its role in my symptoms.

One thing that my mom suggested today is to never overeat, which means just eating small bits periodically. In other words, back to the gastroparesis diet. It does help. Anytime I overload my GI tract (fiber, fat, or volume) I get these episodes.

Whatever happens, my mom is probably going to have a normal life span thanks to octreotide and her persistence in advocating for the best medical care for herself. It was too bad that it took her 8 years to get diagnosed, but at least we know what to watch out for. She remembers having symptoms since childhood.

Thank you for bearing with me as I re-hash all of this stuff. It does seem like these past few months have seen an increase in symptoms so I've started weaning off the paroxetine/paxil. It would be great if, as Mayo told me, I have "just" POTS... time will tell.

[juliegee]

So happy to hear about your Mom- what a blessing after such a scary DX. Wow- and your brother affected with neurofibromatosis. you know, I was browsing through Dr. Diana Driscoll's site the other day. She's a doc who's linking POTS, MCAD & EDS, etc. and neurofibromatosis is apparently often linked as well.

Have you looked at her site?

Julie

[janiedelite]

Update: I skipped my paroxetine today and guess what... NO burning at all. First time in months. I took it at night as usual and I'm burning like crazy now.

[icesktr189]

Zoloft made me burn like CRAZY! Lexapro didnt... maybe you could switch over to something else??

[janiedelite]

I'm not sure if I even want any more ssri's. It's not just the burning, but I felt agitated, had muscle twitches, fatigue, nausea, flushing, diarrhea. I had all this at the beginning of trying paxil but it was quite mild and I thought it would go away. Then life goes on and I forgot about my initial response to the paxil. All of these symptoms are ones that I deal with on a regular basis anyway, just to a milder degree. I've been on it for 6 months now at 25mg/day and these side effects are quite debilitating at this time. Because of my family's history of neuroendocrine issues and my mom's high serotonin levels, I'm staying off ssri's for now.

[lieze]

That's exactly how I felt on Zoloft.

I had to stop because I developed a rash all over and got flu like symptoms.

I called and reported it and was told it was just normal-so I took one more and the rash and flu like symptoms intensified and I stopped.

[juliegee]

Yay- you figured it out!!! I had a similar experience with turmeric. I felt great with it at first...then after a few weeks, the tops of my shoulders began to burn unbearably. When I stopped the turmeric, the burning stopped.

Many people don't realize that the burning CAN be a symptom of an allergic reaction. Sorry you had to learn the hard way- me too

Julie

[janiedelite]

Thanks, guys!