Introducing myself, hi!

[PauU]

Hello everyone,
My name is Paula, and I was diagnosed with MC in December 2021. To put a fixed date to when my problems started is hard, because I think I've been having health problems for years and I think it was gluten sensitivity related (constant headaches, joint and muscle pain, extreme fatigue, brain fog, which of course the doctors said it was all stress). However, my GI problems proper started with acid reflux back in 2019 or so. Doctors prescribed PPIs and told me not to eat acidic foods, and that's it for them. It wasn't. After a few treatments with PPI and almost non-stop use of gaviscon chewable tablets, my colon said "no more!". I must mention that like many of you guys, I am controlling and perfectionist and on top of that I am finishing my PhD, so when my crisis started, in the middle of the pandemic, I was trying to go back to my country to do fieldwork and I was very, very stressed. Acid reflux wouldn't let me sleep, no matter what I ate, and so I decided to take Nexium. I was so dizzy that I felt I would faint at any moment. I went to the doctor. She did an endoscopy and told me a had a mild gastritis. Prescribed yet another round of PPI, now an even stronger one: pantoprazole. As soon I as started with that I felt it was wrong. Every morning after taking it I felt dizzy and my heart rate would go up a lot (I am usually in the 60s and I was in the 90s with that drug). I told her what I was feeling but she said that that wasn't a side effect of pantoprazole. And then the diarrhea started. It wasn't good, as all of you know. But add to that that I was doing fieldwork in the middle of the most arid desert in the world, excavating with 100 degrees and no shade. After visits to too many doctors, to discard parasites, bad colon bacteria, and even cancer, they put the cherry on top and decided to put me on antibiotics, thinking it was travelers diarrhea. So, bye bye gut biota! Since the diarrhea continued, no matter my diet or medications, they decided I needed a colonoscopy, and then they found the MC. At that point I had already lost about 10 pounds (and I was already skinny), and I could barely leave the house, but I had to travel back to the US, and I did, feeling very scared and almost not eating anything for a day.
Once in the US, finding a doctor who would give me a treatment was very challenging. I had found your book, Tex, and I knew that the only thing that would probably stop the diarrhea at least temporarily was budesonide. They prescribed it for 3 months. I saved some money for the stool test from the Texas lab (living as sick grad student is hard!), and after a lot of suffering and 22 pounds lost, finding out that antihistamines helped a lot, finally I started feeling better, and regaining weight a year after my diagnosis. The weight loss is one of the scariest things I've ever faced. I looked at myself in the mirror and I saw a dead person. I felt I was slowly, not so slowly disappearing from this world.
My diet is so much better now, though! After reducing it to 5 food items, now my restrictions are only the main four allergens: gluten, soy, eggs and dairy, although I can withstand traces of them. I also only can eat red meat, and nuts are also not very good. But fiber, I can eat as much as I want now: fruits and veggies, all of them, except for bananas that trigger a histamine reaction.
Here is the thing. I was more or less in remission, with a couple Ds here and there after trying new foods or going to restaurants while traveling. But, last Sunday I had this strange episode of high fever and muscle and joint pain. I thought it was COVID, but I tested negative 3 times and it lasted only one day. Well, because of the fever, I forgot to take my Allegra, and decided, after 1 year of taking antihistamines every day (I live in Tucson, so pollen allergies are horrible throughout the year), to try and quit the antihistamine. On the third day, diarrhea and palpitations. So, here is my question: what do you guys suggest? Should I keep trying without the antihistamine? Should I take more vitamins? (Magnesium always gives me D, no matter the form, so I do Epsom salts foot baths), or maybe I could try taking the antihistamine every other day or 3 times a week?
For those of you who read all the way to the end, thank you so much for your help! I truly cannot express how much this community has helped me through, no doubt, the darkest time in my life. Thank you, thank you!

[tex]

Hello Paula,

Sorry to see that you're having a relapse. After reading your post, here are my thoughts:

MC does not cause fever. So the fever you experienced on Sunday was caused by something other than MC. At your young age, diverticulitis is not likely to be a problem. It's more likely that you may have picked up an intestinal virus of some sort, if the problem is not Covid. It's possible that you might just need a few more days for the diarrhea to end. If you can see blood in your stool, you may have picked up a C. diff infection, which would need to be diagnosed and treated by your doctor.

But if the virus has triggered an MC reaction, you may have to clean up your diet in order to end the reaction. In other words, you may have to eliminate all traces of your food sensitivities, and their derivatives, including cross-contamination possibilities. For example, if you eat out on a regular basis, there's better than a 50% chance that every meal eaten away from home is cross contaminated with gluten, let alone your other sensitivities, even at restaurants that claim to serve "gluten-free" food.

If the problem continues, and budesonide worked for you the last time you tried it, you may have to resort to a budesonide treatment, especially if you can't be absolutely sure that you're maintaining a squeaky clean diet. But if you have to resort to budesonide, don't make the mistake of starting with a reduced dose, as some doctors recommend, because that rarely works. Research shows that budesonide is less effective every time a treatment is ended, and then restarted.

It's even possible that your body may have been maintaining remission because of the daily antihistamine, because for some of us, a daily antihistamine works almost as well as budesonide. And if your diet has not been totally devoid of your food sensitivities, as your post suggests, I'm surprised that you were able to maintain remission (or at least, partial remission) this long, because most of us have to be very meticulous with our diet, in order to remain in remission indefinitely.

Welcome aboard, and please feel free to ask anything.

I hope this helps,

Tex

[PauU]

Thank you so much, Tex. I am very careful with my sensitivities, but occasionally I eat out, that's true. The times I know I've had some traces of gluten or even one time I ate a flour tortilla by mistake, have been very rare accidents and have induced headaches and joint pain, but not diarrhea. However, my kitchen is not completely gluten free because although I do all of the cooking, and I do it gluten-free, egg-free, soy-free and dairy-free, my partner still eats bread or pizza from time to time. All of my bathroom products are gluten-free and soy-free as well.
I will see what happens the next couple of days, maintaining an even more strict diet and not eating out at all, and without the antihistamine. You are right that maybe I caught a virus different than covid or even covid itself, and that that affected my gut.
Any recommendations on vitamins?

I hope you are doing ok, and I thank you again for all of your work and dedication to this community,
Paula.

[Erica P-G]

HI Paula,
Welcome :-)

My gut instinct is you caught a 24hr flu as it isn't the Cov because body aches are more common in flu and colds.

Magnesium in the early stages of healing may cause a little upset and I use ReMag Lotion by Dr Carolyn Dean. When you are ready see if Qnol Magnesium (carried by Walmart now) will work for you. I use the 200mg Glycinate capsule morning and night to get 400mg daily and it is very cost effective compared to ordering online. Finally a good magnesium I can get locally!

I wish you well on your food journey...as busy as you sound it can be rough but I know you will make it work for you
Erica

[tex]

Paula,

In addition to depleting magnesium, as Erica pointed out, MC also depletes vitamin D, so most of us take a sizable dose of safe vitamin D (at least 4000–5000 IU) while we're recovering (possibly more, if we live at a northern latitude), because vitamin D and magnesium are essential for the proper functioning of our immune system (our immune system is in charge of healing, as you're probably aware).

Tex