New here-hello!

[TaiaK]

Hello! I am new to the board although I have been reading and studying everything here for the last 2 months trying to figure out my plan. As others have stated-a wonderful wealth of information!!

So, I'm a 46 yr old female living in the Dallas/Ft Worth area. Diagnosed with LC early May of this year after an upper endoscopy and colonoscopy. This was after 4 1/2 months of diarrhea and a trip to our family Dr (take a probiotic and we'll run a stool test, don't stress). Test came out negative. Had a physical and was put on meds (armour thyroid at my request) but all else ok except LDL cholesterol. I finally got into a GI in April. After a long history discussion and review of blood work from family Dr she suspected either microscopic colitis or celiac. Well, I thought she was crazy because who had heard of microscopic colitis?? Also how could I have celiac?? She mentioned the thyroid issue and autoimmune link etc. Had the scopes and they called the next day-yes to LC, no to celiac. She put me on Budesonide which I knew from this site may happen and I decided I'd give it a shot. I did end up getting the meds though a compound pharmacy (Recept pharmacy) in Grapevine, TX. They do a lot of work for Baylor Hospital here and my GI office is affiliated with this hospital. My GI office was SUPER helpful in helping me get this drug at this pharmacy due to cost. Very good experience with the pharmacy as well-they even deliver to my door as well as anywhere in the US for free!

My GI does not feel strongly on the diet connection (was not surprised) but by the 3rd week of May I was gf,df and egg free. So, I am 9-10 weeks into diet and may not know yet if it's diet or meds or both but there has been improvement but my stool still run the gamut from very loose to "sandy" to pieces to maybe twice the closest I've been to normal but still not. I still feel like motility can be fast certain days but not others. I go crazy trying to figure it out but with all this and 1 imodium a day if I'm out to eat, I can cope. I do believe there is a hormonal component for me.

It's worth mentioning that I had a follow up GI appt mid June and I was feeling pretty good. I brought up EnteroLab and Dr Fine with her-aware of his former connection to Baylor-where my GI was trained. She is pretty young-middle 30's. Just curious what her reaction was-she feels that he is a bit of a "yahoo" and knew his name and his lab etc. She did mention that he was a pioneer in the diet/gut connection (how can there NOT be?) but she didn't feel the labs were worth my money and I don't necessarily agree with her opinion but have not done testing yet-not sure if I will. I'm aware of the Budesonide and diet affecting results although I'm sure gluten will still show. I may do it at some point.

The GI gave me the taper schedule for the meds-super slow over 9 months. I have already stepped down after 8 weeks at the upper dose. I go back to her early Sept. She has mentioned this diagnosis is not rare and they are seeing it more and more.

Meanwhile I was back at family Dr for a follow up cholesterol test a month ago. All I can say is she walked in with results and asked me what I was doing because my results were dramatic (LDL down 50 points). Talked about new eating plan and she was very supportive-she had not heard of MC but seemed interested. I am going back end of Oct for follow up cholesterol, thyroid and vit D (she supports supplementation and says I would certainly test low now).

So now we have a family wedding vacation on Monday including plane travel, lots of car and 3 cities. You all know where I'm going with this. I'm going to do the best I can and the first 3 nights in a hotel but last 4 with family who knows about dietary stuff so that is good. My husband has gone GF just for his general health-and he's feeling great. Very supportive but does not get my bathroom stuff/anxiety. Lol.

I'm tweaking my vitamins-doing fish oil, tumeric, Mag Glycinate as well as Epsom foot soaks when I can, b12 (but have the wrong kind and will be ordering Tex's mix when I return from my trip) and 6000 units of D3 a day.

Then, about 3 weeks ago I started getting TMJ symptoms-stop the madness! I am seeing this can be connected to MC as well. Jeez. So far it has just been a few fleeting 30 minute jaw popping on one side, clogged ear. Nothing worse-yet.....

So looking for encouragement since I know healing can take a long time and it's easy to go "mad" in that time, any advice on vitamins, the TMJ stuff and maybe what different types of stools mean-in MC language not the Bristol Chart.

Trying to keep my head up because it is what it is and I have to deal with it like it or not. Looking forward to "meeting" everyone and I'll communicate as I can with this trip coming up.

Taia

[tex]

Hi Taia,

Welcome to our Internet family. Wow! You're a fast study. You're pretty much doing everything right, as far as I can tell from your post. You are well on your way toward recovery.

Regarding the TMJ, I had it so bad that on some days I could barely get my teeth apart far enough to slip a teaspoon through so that I could eat a little soup. After my gut healed, the TMJ disappeared and it has never returned. The vitamins you mentioned should be sufficient while you are recovering. Many of us skip vitamins until we are in remission, to make sure that some ingredient in them does not derail our recovery. Be sure to read the labels carefully, because some supplements are notorious for containing soy, for example. Many/most of us are also magnesium deficient, and many of us use topically-applied magnesium in order to avoid the risk of magnesium causing diarrhea. That said, oral chelated magnesium (magnesium glycinate) seems to be safe, and no one has reported having any problems with it (except for "buffered" chelated magnesium).

We each seem to have our own somewhat unique pattern of bowel movements while we are recovering, and it's very common to have bad days mixed in with the good days during the recovery period. Early on, the goal is to reduce urgency and frequency, and as we continue to improve, then we will begin to see more subtle improvements. Because improvement is not always continuous, it's often helpful to consider our condition in terms of monthly intervals, rather than in terms of daily intervals, as we heal. But attention to detail and perseverance pay off. Sometimes we have to fine tune our diet as we go (especially as we wean off budesonide), but hard work to do everything right early on, will pay off in a faster recovery, and the sooner we get the symptoms under control, the sooner we can get on with our life.

Regarding MC language for different types of stool, have you seen the Poop Room yet? For example, here is a list of descriptive terms for different types of poop sometimes seen with this disease:

The Poopies Files

You are well on your way, and you seem to have the right attitude to be able to kick this disease to the curb. Denial is not an effective treatment, and only prolongs the agony. We have to embrace the disease and look it right square in the eye, because it is now a part of our life, for better or for worse. And surprisingly, most of us eventually discover that it is for better (despite the fact that such an outcome seems impossible early on). You seem to be embracing the disease, and I feel confident that you will see what I mean (about life being better because of the disease) after you have the symptoms behind you, and your body has healed.

Again, welcome aboard, and please feel free to ask anything.

Tex

[TaiaK]

Thank you so much for your response Tex!

Why had I not seen the Poopies Files? Lol-that gave me the laugh I needed. I also found a thread "I should have worn a diaper". I'm laughing so hard I'm crying. Noone else would find this stuff funny.

A follow up on the TMJ issue-is it normal that it popped up 9 weeks after going GF? It just seems weird I've not dealt with it before. Does it have any particular meaning as to the timing. It sure doesn't give me confidence that I am healing......

Taia

[Deb]

Taia, I just wanted to mention that my total cholesterol dropped over 50 points after going on thyroid meds (natural desiccated) with no dietary changes. My PCP was surprised at my levels especially when I told her I was eating more fat than ever. Coincidence? Deb

[tex]

A follow up on the TMJ issue-is it normal that it popped up 9 weeks after going GF? It just seems weird I've not dealt with it before. Does it have any particular meaning as to the timing. It sure doesn't give me confidence that I am healing......

That's not typical, but I wouldn't say that it's particularly abnormal, either. TMJ is poorly understood by the medical profession, but it appears to be a side effect of autoimmune diseases. Some day they may decide to label it as an AI disease itself, but similar to celiac disease and MC (which IMO are side effects of gluten sensitivity), it is strictly a side effect of other issues, not a disease itself.

It's important to note that TMJ only seems to appear after an AI disease has fully developed, and clinical symptoms have reached a relatively high level of severity. My TMJ didn't show up until after I had already been having MC symptoms for several years. I have a hunch that researchers will eventually discover that TMJ symptoms are the result of the development of a unique antibody response, secondary to the primary AI issue or issues. That would mean that it could present at any point after a primary AI disease has "matured".

The fact that your TMJ showed up after you had already begun the GF diet is surely just a coincidence. It's time had come, and the fact that you had already made diet changes was irrelevant to its development. Most people believe that as soon as we change our diet that should quickly resolve our digestive issues, even if the digestive problems are due to an AI disease. But that's simply not what happens (in most cases). The diet changes certainly have an immediate and powerful effect on our attitude and our lifestyle (we don't like to have to make those changes, nor do we like the early effects and the inconvenience they cause), but the fact of the matter is, AI issues resolve very slowly.

Antibody production does not cease immediately, just because we stop ingesting the antigens that trigger the production of antibodies. The immune system remains on high alert for a significant length of time, just in case those antigens show up again. In the case of gluten, the half-life of anti-gliadin antibodies is 120 days, so it takes a very long time (years, normally) for a high antibody count to decline to non-detectible levels. And as long as the antibody level remains relatively high, production of new antibodies may continue (at progressively-reduced rates). Consequently, it typically takes a while for antibody rates, and therefore clinical symptoms, to decline.

Remember that the stool tests offered by EnteroLab can reliably detect anti-gliadin antibodies for at least a year after gluten has been withdrawn from the diet. And in most cases, the tests can still detect anti-gliadin antibody levels high enough to trigger a positive test result for up to 2 years after gluten has been withdrawn from the diet. This can result in a huge lag in response rates to treatment. That's why we have to be patient enough to allow the diet to work. But the point I'm trying to make here is that the persistence of anti-gliadin antibodies could make it theoretically possible for secondary immune system reactions to occur for at least a year or 2 after diet changes have been made. I certainly don't believe the window of opportunity exists that long in the real world in every case, but the possibility of a secondary AI event showing up during that time frame definitely exists for various AI issues, long after diet changes have been made. Vitamin D level is critical in this issue, because a vitamin D deficiency sharply increases the risk of developing additional AI issues. Many members here have been diagnosed with additional AI issues after the diagnosis of MC. But the sooner we adopt the necessary diet changes, and get our vitamin D level up in the middle of the "normal" range, the sooner we close that window of opportunity that allows additional AI development.

Remember that those who give up too soon typically feel that they have proven that the diet doesn't work. But that's simply not true. All that they have proven is that the time they allowed for the diet to work was not sufficient. Or else the diet they chose was not up to the job because it contained one or more foods that caused their immune system to react.

The time to remission after making diet changes varies greatly among members here. Some are lucky, and they see results within a week or so. Most are not so lucky, and it takes months before they see substantial improvement. FWIW, it took me a year and a half. And yes, I had TMJ symptoms that waxed and waned during that period.

Tex

[TaiaK]

Deb-interesting that your cholesterol dropped so much also. I was wondering if it was meds alone or diet or both. Dr. said she had not seen a drop like that with meds alone but it happened for you. I need to feel diet had some part-since the change has been rough. Makes it easier to think it's helping other things behind the scenes!

Tex-thanks for all that info! I think my issue is I feel like I've been dealing with this for so long, when in reality it's only been 3 months since dx so I have to plod along and be patient!! I like what you said about framing this on a monthly basis and not daily. As I collect more months, that will be easier to look back on. For now, the TMJ issue is low key and very fleeting and hopefully it will stay that way.

A constant thought in my mind is-how long did this all take to build up to this level without me noticing? Must have been quite a while. Ironically, the last few years I worked as a baker at a gf/organic cupcake shop and was exposed to all the customers and their intolerances including dairy, soy, gluten etc. I learned a lot about all of this there and from some co-workers who were very well versed in Paleo etc. I can't help but feel that job was part of my life for a reason and now here I am. I should have known this was coming since my mother and her sister are an AI mess-one thing after another for them.

Have a good weekend everyone

[Deb]

Taia, it's a challenge figuring this out. I had been GF for a couple of years without any changes in my cholesterol so I'm pretty sure the NDT made the difference with me. I too believe we get put in situations for a reason (your cupcake connection seems meant to be). Deb

[Gabes-Apg]

Taia,
welcome!

A constant thought in my mind is-how long did this all take to build up to this level without me noticing? Must have been quite a while.

the niggly symptoms appear so gradual that we dont really acknowledge them until things are chronic.
and in some cases we dont fully realise the symptoms are linked until we come to sites like this and read the posts...

I can't help but feel that job was part of my life for a reason and now here I am.

for most people here, it is a combo of inputs that brings MC into our lives, Genetics, lifestyle/work, medications, hormones, infections/bacteria, extreme mental/emotional stress event, etc etc
as you read through various posts and polls you will see the common inputs...

grab a cuppa do some reading of the posts/discussions.
take it one week, one month at a time...
you may even find some info to help your mother and sister! there are quite a few of us with multiple AI issues....

take care

[Erica P-G]

Hi Taia :-)

I'm learning to be patient as well...I am in my 4th month of All the changes and just when I thought I could ride it out a while my hormones have decided to get in on the act I started having fairly good 5's on the Bristol scale, but the body decided I must have been feeling a bit too good lately so I'm hovering around 6 for the longest time until I get this next phase figured out.

Hang in there, you sound like you are going to get to a smoother place sooner than later too. I honestly feel it is going to take up to a year maybe more to really feel I am understanding all the nuances that keep popping up from this MC stuff. I take it as it comes though, can't push a mule to go any faster than it wants to

I've tried to share my journey with my family, and they can only take it in bits and pieces, no matter how much they love me....so you are not alone.
Take care,
Erica

[TaiaK]

Gabes-thank you so much for the welcome!

Erica-I have been reading your posts on hormones as I know this is a big factor for me.

So i am currently on day 3 of an 8 day vacation. I was very nervous about this trip as there are 2 flights each way, lots of car time etc. We are in Toronto now and it has been pretty easy to find things to eat. Back to the states (NY) tomorrow and a family wedding etc. Trial by fire.

The day before we left I started getting nervous so the stress didnt help. I also ate very little prepping for a day of flying, then i ate little once we got here. I realized that i had to eat. I was beginning to get really bad gas and when i pressed on my tummy it felt like a bruise-painful in a way I wasnt familiar with. Today we had a little downtime and my son and I grabbed an actual meal, I ate it (Greek-all gf) and imagine that-I feel so much better. I was starving myself so i didnt have to deal with consequences. Man, this MC makes your brain crazy!

I have been taking half an immodium once or twice a day and its working well. Hoping to have a wonderful evening with a nice meal and a visit to an art museum

Appreciate the warm welcome. Taia

[Erica P-G]

Hi Taia

One thing for sure with MC is don't let yourself get too hungry, try to eat protein (turkey, chicken) if you get in a pinch (especially while healing). Our energy level gets really low and then before you know it we are feeling miserable.

The hormone thing I think has a mind of its own when it decides to mess with the symptoms of MC. So I hope I find a roller coaster on this trip that doesn't have too many bumps I will definitely keep posting new info as I come across it as I am sure lots of ladies may find some things pertinent in all this.

Keep enjoying your trip!
Cheers
Erica

[Leah]

You are doing great so far! Sometimes, it's best to not do too many supplements while trying to heal. I couldn't do fish oil. If after a while, you don't continue to improve, you might want to try taking an OTC antihistamine to see if that makes a difference in your stools.
good luck
Leah