I Need Help. Badly. :(

[danaf617]

Ugh.

I haven't checked in on here in a few weeks. Things are worse than ever. After my 3 month strict gluten-free trial, I did a one week challenge. Yeah, definitely gluten intolerant. My stomach symptoms got worse and I had the strangest new symptom. At the crown of my head, I felt like my scalp was tightening over my skull. It happened about a dozen times a day during my challenge and I haven't felt it since going back to gluten-free. Thank goodness cause it was very uncomfortable.

What would you call that? A musculoskeletal reaction?

I am still having stomach pains 24 hrs a day. There's never a break, it's unending. I worked with a naturopath and had a stool test done from Metametrix. I suspected candida overgrowth and the ND suspected a parasite or bacteria. The results came back that I am + for a parasite but the exact one can't be classified. Given my symptoms, we did a broad spectrum antiparasitic. My levels of good bacteria were also low despite taking a daily probiotic, so I also took a very very high dose probiotic for a week and now I'm on a maintenance dose.

Finished those supplements and I'm still in pain all day, every day.

I just made an appointment with a 2nd Gastroenterologist that works at Thomas Jefferson University Hospital in Philadelphia. The gastro/hepatology dept there has a great reputation.

My naturopath also mentioned an elimination diet cause she suspects another intolerance can be causing this. I'll speak more with her this week.

Here's my immediate problem that I need help with.

I'm scared to leave my house. Over the past 10.5 months of dealing with these stomach issues, I have been out and gotten stranded places, being unable to leave cause I keep going the bathroom. I guess my head had about enough of that because over the past 2 or 3 months, I give myself diarrhea if I try to go out. Even making plans to go out and getting dressed sends me to the bathroom. Looking up the phone number for the new gastro so I can call and make an appointment sent me to the bathroom, just because that means I'll have to leave my house to GO to the appt. It's that bad. I'm a SAHM to 2 toddlers and we stay home every.single.day. My husband even assumed the task of grocery shopping cause I'm too anxious to go.

I had enough today when I tried to run an errand and my stomach started rumbling as soon as I left my neighborhood. I'm calling my family doc in the morning and asking about anti-anxiety meds. I don't know what else to do. I'll never figure out what is giving my digestive tract such trouble if I can't get to the appointments.

I've never taken any things like this. It just shocks me that this has affected me so much. I made it through a having a stillborn at 24 weeks and having her twin at 28 weeks and in the NICU for 3 months better than I'm handling this. I've always been mind-over-matter but I just can't kick this. I've tried meditating to calm me and it doesn't work. My naturopath wants me to see this DO for Osteo Manual Therapy. I can't get an appt till December and I'm sure that's not something that will cure me in 1 appointment.

Has anyone else taken meds for this?

Thanks for reading if you made it this far.

[K8ling]

I would DEFINITELY ask for an anti anxiety med. I had similar problems pre diagnosis and post diagnosis I was afraid to go anywhere. My doc put me on Lexapro and it's working very well for me. I am on a VERY low dose and it takes the edge off.

I hope it gets better for you! I have a 2 year old so I understand how being in a house with a toddler can be XD.

[Dixiebell]

It sounds like you have your answer now.

Were you hoping for testing or was this your test?

I have taken small doses of benadryl before to help with anxiety, maybe you have some at home? Maybe you could take some imodium for the times you can't be at home or near a bathroom.

Hopefully this will pass quickly.

[cassP]

im so sorry you're having to deal with all this ... I hope that being gluten free and killing your parasite will get u normal soon!! I would suggest u dont do ANY dairy or coffee till you're done with the D.. ALSO i think you should definately get in with an osteopath even if 1st apt in december.. I accidentally got an osteopath when i crawled into a walk in clinic last month- with stabbing abdominal muscle spasms.. He adjusted my back, listed and felt my abdominal area.. He observed that my intestines were "hyper" like i was about to have D. He explained that tight back muscles can send excessive signals to the intestines causing D. You should def try that out even if you feel completely better

*forgive my mispelling... On my smartphone :/

[dilettantesteph]

When I get badly glutened I get uncontrollable D and can't go anywhere either. Sometimes I don't even make it to the bathroom even when I'm home. Well, sometimes, the kids need a ride somewhere, or something has to be done anyway. Finally I broke down and bought some adult diapers. I haven't actually gone in one yet, but it does give me some peace of mind to know that if it happens, it won't be the terrible mess it would be if I didn't have them on. Maybe that might help you too.

[cyberprof]

Dana, I too have had times when stress made me have to run and also to worry where to find a bathroom. I also have bad tummy trouble just from stress, even without gluten: I think it's from 20+ years of being undiagnosed.

On the not wanting to leave the house, I can certainly sympathize. I'm hoping Ravenwoodglass will pop in here in a bit and give you some help. There may be others but I think she has had a similar experience. Best of luck to you.

[T.H.]

I honestly don't know if my own experience has any relevance, but I will mention it in case it does, because if I hadn't found the answer, I would likely still be having trouble every single day, just like you.

For myself, my being sick all the time had to do with the fact that I am actually very, VERY sensitive to gluten. I had a few mild allergies that we thought might be going out of control. I was having trouble with all sorts of foods that the docs thought might be a hyper-reaction - intolerance or other issues - that would calm down after I'd been gluten-free for a while.

But now? It seems that it's almost ALL been gluten. I can react to gluten in pesticides sprayed on the produce, to the small amount of contamination that is present in pretty much ALL grains (even those from gluten free facilities, because they are contaminated by the shared harvesters, the shared trucks, the shared mills). I react to most beans, seeds, and nuts because they are either grown as rotation crops for wheat fields or processed with wheat or other gluten grains. I react to organic veggies that had gluten in the mulch used on them. To foods that had gluten free dedicated lines where there was a gluten source used in the soaps that cleaned the equipment.

When I grow food myself - I can eat it. Every last bit of it, so far. The same foods that made me really sick when I bought them organic at the stores. I have found a couple products that I seem to be able to buy okay at the grocery store, like buffalo meat and sweet potatoes if I peel them after washing them, then wash them again.

I have now met a few others like myself, and it has been a godsend to speak to them and get the names of farms that sell grain online from farms that ONLY grow one type of grain, or bean and nut sources that don't go anywhere near wheat, etc...

Also, one thing that makes me know it ain't just me? There was an interesting study (I'm still trying to find where I put that stupid link!) that showed many refractory celiacs who weren't healing did better when they went on a 'more gluten free than before' diet. so I'm thinking that some of us are more sensitive to gluten than some of the gluten-free products allow for.

Perhaps if you cut all grains for a short period, like a week, stick to veggies and fruits and high carb veggies like potatoes and sweet potatoes. Cut all the seasonings (even salt can have gluten, if it's processed with the wrong stuff). use only water to cook (oil can be contaminated because the seeds/nuts/grains making it were, or because of what it's processed with). Eat a meat that is not cut up at your deli (CC is real easy there), but from a factory where they tend to have JUST that meat to process.

And then...just see. If it helps, you'll know that you're getting something in your processed food that's getting you. Perhaps not gluten - there are other things that are common in processed foods, yeah? - but you can at least eliminate the possibility that it's gluten this way, if there is no change at all, yeah?

I'm sure there will be other great ideas, this one would just apply for someone who is a bit more sensitive to gluten. Even though I'm super sensitive, my daughter is not. But going hyper-gluten free for me, we've realized that she DOES react to many gluten-free products that we had thought were safe. So...it can definitely happen.

Oh, also? For my daughter - anxiety, anxiousness, huge bouts of crying are all the norm for her when she has gluten, even in amounts that are so small they don't set off her gut. When she gets completely off of gluten, these emotional problems disappear.

My son and I tend to have anger issues when we get gluten, and my son gets no gut issues at all, but again, when we're off gluten, we're happy campers.

And this is for two kids who lost all their fun snacky goodies, so I figure it they can lose their fun food and they're happier, that's saying something, yeah?

[danaf617]

Thank you so much for replying. It's so nice to come to a place to "talk" to people who know what I'm going through. My husband, bless his heart, just says things like "Don't think about it" or "What's the worst that can happen? You go in your pants? It's not the end of the world."

Uh, yeah, sweetie, that is pretty much the worst that can happen in my opinion. hahaha

It's enough to literally paralyze me with fear of leaving the house.

K8ling- A friend of mine just suggested Lexapro when I called her crying yesterday. She has major stress-induced IBS and recently started taking it. She said it helped her a ton!

Dixiebell- I don't want any more tests for this. My celiac panel was negative but I got tested by Enterolab and showed antibodies. That was enough for me to commit to a strict gluten free trial diet. The challenge was the test and answer I needed that my body does NOT like gluten anymore.

I have taken Immodium to go out before but unfortunately it doesn't do much when it comes to the bathroom urges due to nerves/anxiety.

cassP- I've been dairy free since shortly after going gluten free. It helped alot at first then I went downhill again after about 3 weeks.

I'm definitely going to keep the appt with the Osteopath. And actually, the new gastroenterologist that I'm seeing next month is a DO also. That's why I chose him out of all the docs in the practice. He was the only DO in a list full of MDs.

dilettantesteph- I've totally put one of my toddlers diaper in my pants before when I was out and needed to get home. lol I didn't need to use it, thank goodness, but it gave the peace of mind like you said!

T.H- Wow! It's crazy how sensitive you are! I'm glad you figured it out but man, that must be difficult. Your diet must be much healthier without processed foods, too.

Here's the quick summary:

I have always been healthy. With the exception of the occasional stomach bug, I've had no digestive issue my whole life. Until one day last December, when I got sick. Seemed like a virus or even a food poisoning. It came on fast and furious with severe stomach pains and diarrhea that lasted a few hours. (I was going every 15-20 minutes for a few hours.)

I haven't been right since. I've been in pain daily and dealing with a cycle of C and D for over 10 months. The only "good days" I've had were the first 3 weeks my gastro had me on Librax and the first 3 weeks I was gluten and dairy free. That's it.

My naturopath thinks that something else is going on that cause a leaky gut, resulting in the gluten intolerance. But what? My colonoscopy was good and the Metametrix test just showed an unclassified parasite. The ND even said that it could be a transient parasite that isn't causing the problem. There is something wrong and nobody is fitting the pieces to the puzzle together correctly. Hopefully it won't be ruining my life after I get on some anxiety meds but still... why am I in pain every single day for nearly a year?

Oh, the only other thing that has showed... the bloodwork my gastro ran in the spring showed that my TSH was low. He never said a word about it but my naturopath pointed it out when I saw her for the first time and gave her copies of all of my tests.

My mind has been running wild. Are my intestines twisted? Is my gallbladder dieseased? Is there a tumor somewhere? I just want to know what is wrong and why suddenly, in one single day, a switch got flipped and I went from happy and healthy to house ridden with daily pain?

[tea-and-crumpets]

I know you mentioned you take Immodium, but how much do you take? If I know I'm going out somewhere and my stomach is upset, I'll take two first thing in the morning and if I get sick I'll take another. The kind I take has a max dose of four a day but sometimes I've taken that in maybe two hours. Once I get to that point I'm set. I've been able to be out of my house for 14+ hours doing this.

Good luck... I know how you feel.