Still trying to figure it out

DebE13 · Post by **DebE13** » Sat Aug 16, 2014 3:53 pm

Still dealing with watery D and my stress level right now is off the chart for work reasons. I have my colonoscopy this Tuesday and am thinking about biting the bullet and starting over with my diet afterwards since I will be cleaned out anyway. I have not strayed but continue to have tomatoes and possibly more fruit in my diet than I should. I can't tell the difference with or without them but have found it difficult to eliminate due to lack of variety. I've given up my smuckers natural PB for a few months now along with nuts and baked beans after a bad bloating experience.

I'm trying to muster the will power to eat only rice and jenni o ground turkey until I see a change for the better. As far as I know, those two foods are safe. Is this something that would typically show results within days, weeks, more? The idea of that alone for breakfast, lunch, and dinner is a bit depressing but I REALLY need to see some improvements soon. Although, if stress is the cause of my worsening D then it may not matter. ???

It would be so nice to see something more solid and then start introducing other foods again over time. So far, I have not been able to totally eliminate entocort.

Gabes-Apg · Post by **Gabes-Apg** » Sat Aug 16, 2014 4:26 pm

Deb
I wish i could give you a fail safe solution and time frame,

going back to a low inflammation turkey and rice eating plan is great, given your journey this past year or so, IMO, its ability for success does have some limitations based on;

- the cause of the inflammation
if the inflammation causing your gut to react is not food triggered, but more so to do with thyroid, adrenals (reactions to stress) etc. then the ability to fix the gut will be limited until the other triggers are removed.

- body's reactions are due to nutrient/mineral deficiency / deficiencies
- if the inflammation is due to nutrient/mineral deficiencies, a really bland base level diet can only do so much to help. Good healing, and improvement will only occur once the deficiencies are identified and corrected. Short term deficiencies can take 6-8 weeks, longer term deficiencies can take 12-16 weeks to correct. this means that it can take quite a few months before you see a marked improvement

these two aspects might be why you are struggling to figure out if a certain food is causing you issues.
hope this helps.

Post by **tex** » Sat Aug 16, 2014 4:59 pm

Deb,

You're in a tough situation, with all that stress to deal with. Like Gabes, I wish I knew of some rock-solid recovery plan that would work despite the stress. One thing to keep in mind is that the cleanout process ahead of the colonoscopy sometimes brings remission (or at least improvement) for some of us.

So that might indeed be a good time to retry a very limited diet (limited to foods that are unquestionably safe). It sure couldn't hurt, and though how long it might take to show benefits depends on too many variables to allow it to be predictable, personally I would expect to see at least some degree of improvement within about a week (unless the stress is totally dominating your GI condition).

Tex

DebE13 · Post by **DebE13** » Sat Aug 16, 2014 5:47 pm

Thanks Tex and Gabes,

I know there is no fail-safe plan to remission (darn it!).

Sounds a bit lame, considering what we all have dealt with, but I don't want to put forth the effort and see no results. My magic ball has been a bit foggy so I was hoping yours would give me the answers. Haha.

The only time I have experienced remission was when I had my thyroid removed last year from the anesthesia. It wasn't really remission but I didn't "go" for a couple days since my guts must have been a bit sleepy yet. I was back to usual immediately after both of my previous colonocopies.

I've started using the magnesium spray since I've been having troubles with some leg cramping and a whole-lot of foot/toe cramps. Gabes I was happy to hear your earlier suggestion about spraying it on the stomach vs the legs. I sometimes use it as my deodorant since I've been avoiding regular deodorants since my thyroid cancer. Just paranoid I guess. I still remain on the chilly side so it works ok. When it is hotter out it gets sticky and feels gross. It does burn but hasn't been anything that isn't tolerable.

I've wondered how my thyroid has been effecting my D since I know my T3 is low. I was refused a higher dose after my labs and was told I have to wait until my office visit in September to talk about it. I am only taking 5mcg and requested to try one in the AM and one in the afternoon. If I am denied again I plan to look for a new endo. Keeping my fingers crossed I don't have to deal with that frustration.

I've also had my scalloped tongue return with a vengeance. For the past few weeks it has been causing considerable discomfort. I keep thinking it ties into my thyroid. I used to think it could be food related but I haven't ever noticed a correlation to something in particular that I eat. I've been curious to see if it will go away on e I feel my numbers are in the correct range for me.

My biggest concern has been my work environment- it is perpetually negative. With any luck, I will be making a change for the better. That will bring on its own challenges since I am currently in walking distance to work and eat at home everyday for lunch. I will adapt but it will take some serious planning. It's not a guaranteed change so waiting has been unsettling. My lessons in patience are on-going.

Hopefully in a few months or so I will be broadcasting news of no entocort and glimpses of Norman. It will more likely will be longer than that but once I can remove the negative people from my daily life the sooner I hope to find some bigger improvements. Plus, getting my T3 levels into the higher end of range (which doesn't fit me anyway) should help put some lasting spring in my step.

I seem to be on the hurry up and wait plan.

Oh, one more question.....if I am requesting the tryptase stain should I make an effort to eat high histamine foods before the clean out or won't that matter?

Gabes-Apg · Post by **Gabes-Apg** » Sat Aug 16, 2014 6:03 pm

Deb
based on my journey these past few years, while ever there are things like work stresses having a daily impact, healing is limited. My advice would be do what you can to 'get through' and the when the timing is right (work, family, finances etc etc) do a focussed gut/body healing protocol.

It is frustrating and exhausting that there are so many factors that impact our wellness, and that it is 'hard work'.
What i have learnt this past 6-9 months that in situations like ours wellness only happens when all the planets align. The medications have the body in balance enough that we can work on the root cause of the symptoms, our mental and emotional wellbeing, and how we approach this journey, being at peace with what is, being in unconditional okness with the elements of our journey and taking it a day at a time.
With a bit of science and alot of blind faith, work on the deficiencies, support the body, get the diet as a sustainable workable thing, the happy balance of enjoying eating, eating foods that will aid healing, without feeling trapped by it (unconditional okness)

Healing hugs

Post by **tex** » Sat Aug 16, 2014 6:27 pm

Deb wrote:I've also had my scalloped tongue return with a vengeance. For the past few weeks it has been causing considerable discomfort. I keep thinking it ties into my thyroid.

I believe that you are thinking correctly. You might have to see a good naturopath to recognize that symptom, though. Most endos are probably blind to it.

Deb wrote:Oh, one more question.....if I am requesting the tryptase stain should I make an effort to eat high histamine foods before the clean out or won't that matter?

That depends on your goal. If I wanted a representative test result, I would eat whatever I normally eat. If I wanted to boost my mast cell count, I would stop taking vitamin D and Entocort. According to my research, both glucocorticoids and vitamin D suppress the expression of mast cells. References for that will be in the book.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sat Aug 16, 2014 6:39 pm

You might have to see a good naturopath to recognize that symptom, though. Most endos are probably blind to it.

Agreed, naturopath, dietitian, acupuncturist
it can mean multiple things, B deficiencies (B12, B6), folate, iron, thyroid,
some function testing would be able to narrow down the root cause.

DebE13 · Post by **DebE13** » Sun Aug 17, 2014 10:34 am

Thanks again for your ideas. One step at a time will be the plan. Get through the colonoscopy (which will come and go), keep up with being watchful with my diet, get my thyroid meds adjusted, hope for luck in a job change and less stress/anger, take a look at deficiencies, eliminate entocort.

I don't plan on eating differently for the mast cells. I'm on a relatively low dose of entocort yet and will leave it as is since there is only two mornings left anyway. I just ate my breakfast of turkey and rice and my nose started running within the first few bites. Not sure if it's related but whatever is there will be what gets tested.

LindyLou · Post by **LindyLou** » Mon Aug 18, 2014 6:45 am

Hi Deb. A couple of thoughts. I also take 5mcg generic Cytomel. Initially, I took it in the morning and although it made a positive impact, I was still exhibiting symptoms. I went ahead and increased my dose by another 5mcg and ended up getting heart palpitations in the evening. I then came across an article about circadian dosing for T3 and switched to dosing 5mcg at 2:00 am. Yes it's a pain in the butt to wake to an alarm in the middle of the night but I haven't had to take a nap in a few months. I also found out I was sensitive to the blue dye in levothyroxine and I don't think it's a coincidence that my diarrhea started shortly after I started that drug. Was on it for 7 years!!! Yikes!!! Once I switched to a hypoallergenic form of T4 (Tirosint) I finally started noticing an improvement. Additionally, my primary care doctor prescribed LDN and every day I notice a pretty big difference. The LDN helps to elevate my mood and takes my bm's from a level of 7 to a 5 or 6. I'm going in tomorrow to have my AntiTPO levels checked. The last level was at 1600. I'm really hoping to see an improvement in that. I've come to the conclusion that I can no longer eat out at restaurants. Every time I do, it takes a couple of weeks to get back to where I was. Good luck Deb. I know your struggle. My doctors are now debating whether my thyroid needs to go but that's a story for another day.

Linda

DebE13 · Post by **DebE13** » Mon Aug 18, 2014 8:36 am

Thanks for the info Linda, I will definitely keep that in mind. I first have to win the battle of upping my dose to 10mcg. I was insistent about no dyes in my meds just in case. The Levothyroxine by Mylan has no dyes if you use the 50mcg pills. It's a bit more tricky with the dosing but can be done. I'm glad the tirosint is working for you.

If it comes to having a TT it is worth it if it's a means of improving your health, IMO. The docs all refused the idea that mine was causing my on-going issues. It wasn't until after its removal that the surgeon advised me to hold off on further investigation until I had some recovery time. Prior to my TT the endo had arranged a consult with a rheumatologist and neurologist to further investigate my complaints. My feeling of being on death's door is gone. I am still working out the side effects of improper dosing but that is a different issue. I had hashimotos with almost all the classic symptoms (which was ignored) and lab work that showed everything was A-ok according to text book numbers. I was given the option of having a partial thyroidectomy depending on what they found and I was clear that I wanted it all removed. It's a very personal choice, given the option, but I wasn't going to risk future issues and another surgery. The most important advise I would offer is to to your research and choose an experienced surgeon if you come to that fork in the road.

coryhub · Post by **coryhub** » Mon Aug 18, 2014 3:35 pm

Hi Deb,

When I read 'tomatoes and fruit' I recoiled because personally I can't digest roughage. Three years into having LC and just this year I managed to eat an occasional tomatoe blanched, peeled, and de-seeded. As for fruit, I can tolerate a peeled, cored apple but I can't digest even the tiniest seeds in blueberries or strawberries. I just wanted to share my experience with you. We are all the same yet 'different' and that's one of the frustrating things.
You are on the right path. This web forum is full of warm, caring people willing to share their ups and downs, and send hope and hugs.

Best,
Cory :bigbighug:

Lesley · Post by **Lesley** » Mon Aug 18, 2014 7:46 pm

Deb, I so empathize with you. Bloating is the one of the banes of my existence. I have about given up getting rid of this horrible "pregnant" belly.
I am working on motility, and having a hard slog. I don't know what is keeping me inflamed, and I am not sure, at this point, that I am likely to find out. I know it gets worse with stress, so I just have to accept it.

Good luck for your test!

lisaw · Post by **lisaw** » Mon Aug 18, 2014 8:42 pm

Hi Deb:

I know the thought of going on elimination diet is not appealing. Hope it will help, and you are able to identify triggers over time. If high stress levels continue though, it's very difficult to determine. Like you, I am not having success identifying any more triggers as my symptoms don't vary that much, or might be different on 2 different days with exact same foods, so can't tell.

Good luck with colonoscopy. Let us know about mast cell stain results.

Lisa

LindyLou · Post by **LindyLou** » Tue Aug 19, 2014 12:40 pm

I have a great surgeon thank god! It took a while to find one but he has done somewhere between 30,000 to 40,000 thyroid/parathyroidectomies. He removed one of my parathyroids last June along with a juicy lymph node that tested positive for squamous cells. The last 2 months have been a nightmare for me. Doctors are unable to locate a primary. I've had multiple CT's, a triple endoscopy which ended up clear but I developed a condition called Grisel's syndrome that could have left me paralyzed - thank god I sought immediate treatment. And I've also had a PET scan. The only thing that lit up was my right thyroid. Fine needle biopsies showed no cancer-only Hashi's, but my surgeon said it looked pretty ugly. I think he will leave it up to me as to whether it gets removed. The CT did show a fairly large adenoma on my left adrenal gland so we are now testing for that. Personally, if I could be guaranteed that I would be prescribed WP Thyroid, I'd probably have the TT done but my endo preferes synthetics over NDT.
Since they can't locate a primary tumor, this has the attention of the tumor board at the hospital. They have no idea as to the treatment protocol. It's amazing to see doctors actually throw up their hands and say we've never seen this. Crazy, crazy, crazy!!! But I will say that having the parathyroid tumor removed has greatly increased my quality of life. I feel like I'm at least 10 years younger!

DebE13 · Post by **DebE13** » Tue Aug 19, 2014 4:32 pm

Cory, I've been thinking a lot lately about fruit/tomatoes. What was a limited amount for variety has become much more and I didn't give it much thought since it doesn't seem to make a big difference but maybe I haven't allowed enough time. I resisted the urge to nibble a tomato (fresh from the garden) today with that in mind. What a bummer that it isn't something "bad" for you.

You are so right about the people here.......love 'em!

Lesley, i know your battle has been a bugger to figure out too. It is frustrating. Thankfully, bloating and pain aren't a regular part of my MC. The gas/cramping after this colonoscopy has been much worse than what i remember from the last two. But it's good to know it's cause and that it will pass. I've been frequenting the bathroom as much this afternoon as last night when I started the prep. Grrr.

Lisa, I've done elimination diets before and it is challenging. Years ago when I was first dx I did a rotation diet. This was before I knew anything about what I've learned here. I had a food sensitivity blood test done and it was a big struggle and I had no improvements. Nothing was indicated that I should eliminate soy so it remained in my diet, i drank at least two gallons of soy milk a week and continued to have severe stomach aches and fatigue. No wonder I felt sick every time i ate! Live, get educated from a good source, and learn!

I have only eaten ground turkey since the colonoscopy so I hope to keep up with just that and maybe some rice for a couple days to see if anything firms up. Then slowly add more in. It's easy right now because I'm not all that hungry.

Linda, WOW. You've been through more than me- hands down! Glad you like your surgeon. I made sure mine had many TTs under his belt too. It's such a delicate area to be poking around in. I ended up having one of my para thyroids implanted back into my shoulder area but haven't had any issues with that. My endo won't consider NDT- the whole facility bans its use. Trying to find one in my area that would has been a loosing battle. Hopefully that will change.