My first flare since being diagnosed 2 years ago!

tlras · Post by **tlras** » Tue Nov 04, 2014 10:44 am

Hi all!

Haven't been on here in a long time. Some of you know my story but most probably don't. I was diagnosed with Celiac and MC a little over 2 years ago. I was having tummy issues like nausea, bloating and stomach pains and the occasional acute D for a few years before the nausea and pain became more frequent. Then I visited my cardiologist alittle over 2 years ago for a heart issue and they put me on Toprol XL ( a beta blocker). I had taken this drug 14 years ago with no issues. Within 7-10 days, I started getting the D and it got progressively worse after the doctor trying me on other beta blockers in a 3 month time frame. I finally got off them but D continued for 3 1/2 months. In that time had gotten off Gluten. and dairy came later. Still had D so did the Pepto protocol and weaned myself off within 3 months and never had another episode of D.

Well my 2 years of no D ended 2 weeks ago yesterday, when I was rushed to the ER with bad chest pains...been having them for a month now. No heart attack or blockages..chest X-ray was good but ER doctor put me on Toprol....I took that evil drug mainly cause I needed some relief from the chest pains and I needed my heart rate to come down. Have had a heart condition for a long time. These are meds my heart definitely needs so I thought I would risk it and try the Toprol again but at a very low dose. Within 3 days, I had one bout of D...haven't had it in 2 YEARS so I knew it was the meds. But it's also a side effect of the med as well. So I took Pepto (only 2 doses) for 3 days and got off....still taking the Toprol as I was fearing an imminent heart attack....but D came back around Day 7. That's when I knew for sure that these drugs more than likely caused my MC and that if I didn't get off them, I would get worse and maybe even develop more food sensitivities and have to go back on a healing diet. So doctor has now put me on a Calcium Channel blocker called Verapamil ..main side effect is constipation. I've been off the Pepto for 4 days now and this is Day 6 on my new med, Verapamil...if I'm gonna react to it, it will be by Day 10. D has gone and BM's are normal again...such a relief and hoping this is my miracle heart med as I have to be on something or my heart is gonna give out on me.

It has been a rough last 2 weeks but I think the storm is subsiding. No side effect from the meds and my chest/heart spasms are less and my heart rate is down. Sure my heart is thanking me right now. But oh what a wake up call. Problem is it's so hard to eat super healthy when you have MC as most of you know. But I'm lowering my sugar and carbs and may do one Juicer veggie drink a day (crossing my fingers on that one). But I nearly freaked when I had the D again...wondering if I'd woken up the monster inside me. I seemed to hopefully have dodged the bullet on this one and put that evil beast back down to sleep. Now I know for sure what caused my MC and I won't be downing betas every again. A lesson learned. But I am braver these days...tolerating a lot of food and enjoying it. I expect a set back with meds sometimes but this was a scary test as I need to take care of my heart. But I'm feeling normal in the GI department again and can now concentrate on my heart and getting it better and not having to worry about D along with it...that would have been too much for me to bear.

I have learned so much from this forum and so grateful to have it at my disposal. Please pray for me tho that I keep tolerating this new med...I really need it! I'm assuming they will up my dose soon to get maximum benefit from it. Really want to exercise again. Thank you all for reading. I had actually forgotten what D felt like! Take care everyone!

Terri

Post by **tex** » Tue Nov 04, 2014 3:57 pm

Hi Terri,

I'm glad that you were able to find a treatment that seems to work with both issues. It's really tough being caught between a rock and a hard place, so I hope that Verapamil continues to work well for you. Since it has worked safely for you this long, that's a good sign that it may continue to work well.

Thanks for the update, and I hope that everything continues to go well.

Tex

Leah · Post by **Leah** » Wed Nov 05, 2014 8:49 pm

HI Terri, good to hear from you! I'm so glad you got this under control and I will be sending good thoughts your way that this drug is all good :)

Leah

UkuleleLady · Post by **UkuleleLady** » Fri Nov 07, 2014 7:50 am

Hi Terri,

You are in my prayers. What a harrowing experience to have this heart condition and have to take a med that aggravates MC. A terrible position to be in. I am so happy to hear they found an alternate med for you which seems to be working! And doesn't rouse the beast. I hope you are 100% again soon with your heart stabilized. Keep us posted on your progress.

Sincerely,
Nancy

tlras · Post by **tlras** » Tue Nov 11, 2014 3:26 pm

Just now seeing these responses! Thank you all so much! Yes, Nancy, always so careful not to rouse the beast! I'm on Day 13 with my new meds and they are causing no MC issues whatsoever! So now I can deal 100% with these awful chest pains and hopefully get answers soon....they don't think it's my lungs..but good grief you wouldn't think I would have to wait more than a month for an ultrasound and stress test...ridiculous..I guess they don't think it's anything serious but this is my last day on a 2-week Holter moniter...glad these wires will be off me. Just when I get my life back and energy after suffering with MC and Celiac then something else happens. But I'm just so grateful that my gut is tolerating the BP med.

Leah and Tex..hope you both are still doing well. Miss my Potty People sometimes. Need to get on more often. Nancy, you must be new...hang in there...it gets better! I've healed a lot in a little over 2 years. It's nice to feel normal again...well that area anyway..lol.

Nancy, just read your profile...now I remember you!! Another Texan! Hope you are doing well!

Love,
Terri

Post by **tex** » Tue Nov 11, 2014 4:21 pm

Terri,

I would assume that your doctors have considered that it might be costochondritis (Tietze's syndrome), but if that seemed to be the case, one would think that they could have at least mentioned that possibility to you. Of course since costochondritis has many of the symptoms of a heart attack, it's always necessary to rule out heart issues, thus the need for the monitor. Hopefully, your heart and lungs will be given a clean bill of health, and they will just need to treat a case of costochondritis.

Costochondritis (Tietze's syndrome)

Love,
Tex

tlras · Post by **tlras** » Wed Nov 12, 2014 9:10 am

Tex, they didn't mention that to me but I will be asking a lot of questions next time I see him. I'm familiar with that condition and it's on my list of possible things I might have along with Pleursy. Will be nice to get some answers come mid-December. Can't believe I have to wait that long! But thank you! Just praying it's not narrowed arteries!

Love,
Terri

Lesley · Post by **Lesley** » Fri Nov 14, 2014 9:12 pm

Terri,
Glad you found something that helps, and that you are doing well with your MC. A flare sucks, but you seem to be managing things well.