Odd symptoms

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Alohagirl
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Odd symptoms

Post by Alohagirl »

Aloha all - I could use some ideas... ready to do a new round of searching. Dx with LC MC 4 years ago and been stabilized for over 3 years. I had other possibly neurological sx before - brief time of depth perception being off after trying to add in 2 foods one day and used to have numbness in my lower left leg which has abated. Colonoscopy 1 year ago no longer showed MC. I am stabilized due to very restricted diet and taking supplements without meds. Tired of restricted diet. What makes me nervous about expanding my diet is the very strong reaction I get 30 minutes after eating offending foods - dizzy, lightheaded. almost passing out, sweating until have D within 30 minutes and then I feel much better quickly just exhausted. The last time I had this was when I went off all of my supplements for 1 week 1 year ago just before colonoscopy. What was odd was that I was only eating foods that are normally safe for me during that week. Sounds like a mast cell issue? I don't know if I should consult with Mayo Clinic or some other place to get a better diagnosis (POTS? mast cell disease not MC?), medication / supplement plan so I can expand my diet. Any input? Thx in advance!
LC, strong reaction to cola, squash and D & C Orange #4; moderate reaction to sugar cane, sulfite, sardine, flaxseed, coriander, black-eyed peas and FD & C Blue #1. Enterolab Anti-gliadin IgA 6 units.
gcarlsen
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Joined: Tue Jun 25, 2019 3:30 pm
Location: Calgary

Odd Symptoms

Post by gcarlsen »

I often get light headed along with tingling on my lips & tongue. My whole face feels tingly off & on as well. I get quite agitated & don't sleep well during these spells. I feel tired & weak which can last for 2 - 5 days. I used to think I was getting flus all the time, but since reading on this post, I wonder if it is related to MCC?? Does anyone else get this? When this happens & I am not sure what caused it as I hadn't changed my diet, should I eat very limited foods until feel better? Or push through & continue as I usually eat?

I have figured out a lot of my food sensitivities but I am sure I am missing a lot. Does anyone in Canada know of a place to have food testing done? Or has anyone sent to Enterolab? I have not explored how to have mine done through Enterolab as I am sure there are issues sending between countries.

I was only diagnosed with MCC 1 year ago, but symptoms had been for 11 years. I still have WD & pray for the day I have some consistency to my stools. With food eliminations, I at least do not have the severe abdominal pain as I had for years.
So glad to have found this web page.
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tex
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Post by tex »

Hi,

Both of you appear to be describing allergy symptoms, rather than MC symptoms. MC doesn't cause a reaction within 30 minutes or so. A tingling sensation of the tongue or lips is an anaphylactic (acute allergic) reaction. Yes, these are IgE-based reactions, which are mast cell-based (histamine) reactions. MC reactions are primarily IgA reactions, which take significantly longer to develop. True MC reactions normally take about 3–6 hours, but may start as much as a day or two later. You need to see a good allergist who is familiar with food allergies if you want to track them down.

Regarding food testing, EnteroLab is the only lab in the world that is licensed to do stool testing that is actually accurate and reliable. There are no particular problems with foreign orders. We've had members from as far away as Hong Kong successfully order EnteroLab Testing.

You can see some of our old test results at the following links:

Food Sensitivity Test Results For Names A–J

Food Sensitivity Test Results For Names K–Z

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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