Still feeling horribly.....

[barbieAnn]

Hello all,

I just wanted to vent to someone - people who can understand because not too many people that I know understand what I am going through.

It has been well over a year and I am still feeling so sick. I have been on the gluten free diet for about 1 year now. I had the Enterolab testing and am staying away from my unsafe foods. I stick mainly to turkey, chicken and some beef. My diet is pretty much the same thing everyday. There are days I have to go to the bathroom in the morning at least 5 or 6 times, and other days when I go only once or twice, when I've been eating the same exact things - (I keep a food journal). I'm still having episodes of incontinence and the nausea is on and off all day on a daily basis. I haven't been to my doctor in about 5 months because he was treating me for IBS and no matter how many times I explained to him that it has to be LC, he kept insisting that it is IBS and nothing he prescribed had helped. It didn't seem to matter to him that I've lost almost 20 pounds and down to 95 pounds. My clothes are literally falling off me! So I was trying to be my own doctor and educate myself on this disease.

I am so depressed right now and tired of feeling sick. I honestly do not know how I am still working, but I am. I am going to make an appointment with another doctor and am going to try acupuncture for the nausea etc. I am just so tired of peoples comments, especially my co-workers - "You still feel sick?"; "This hasn't gone away on you yet?"; "Shouldn't the gluten free diet have worked already?"

This disease is wreaking havoc on my social life as well. I feel like a prisoner. There are times when I feel ok, only to get to my destination and suddenly have to run to the bathroom. The symptoms can come on so quickly - I am sure that anxiety does not help the situation. I have had to skip on several Christmas parties because I just don't feel well. Having to sit in front of all that food and watching people eat gets me crazy - I miss food so much!!!

Well - thanks for hearing me rant -

With that said, I wish everyone here a happy and HEALTHY New Year!!!

[tex]

Hi barbieAnn,

Looks like no one else is around, so I'll try to help if I can. My heart goes out to you — despite all your hard work and deprivation, something is obviously standing in the way of your remission.

Are you taking any vitamin or mineral supplements? They might be the problem. And sometimes it helps just to stop all supplements. Are you drinking anything other than water? Toothpaste and mouth wash can be a problem for some of us. Are you licking any stamps or envelopes? Do you take any medications? In cases such as yours, where sticking carefully to the diet doesn't bring remission, almost always, something being ingested every day is cross-contaminated, and the contamination level is sufficient to prevent remission. When we eat or drink something every day, we tend to assume that it's safe — that's human nature.

In severe cases, or cases that are resistant to treatment, sometimes a medication can help to kickstart remission. Are you taking, or have you taken budesonide, or have you tried the Pepto treatment?

I hope you can track down the problem. If we look close enough, surely we can find it. We've got to figure out a way to end your symptoms. There has to be a solution out there, somewhere.

Thanks, and I hope that the New Year is much happier, healthier, and kinder to you than the past year has been.

Tex

[barbieAnn]

Thank you Tex for your response!

I stopped taking vitamin D - right now all I'm taking is my high blood pressure medication. I have been adding sugar to my tea and occasionally eat gluten free muffins - I'm wondering if I need to eliminate all sugar at this point. My toothpaste is safe, as my husband has celiac disease, so he is very careful with everything he ingests. Do you think it could possibly be bread? I have been eating gluten free bread for lunch but there are times when I'm fine and then it will hit me as I said, after I've eaten the same exact thing on a different day.

I had taken the budenoside very early on in my diagnosis, and the diarrhea and symptoms became worse so I was advised to stop. I've taken Pepto only when I am extemely bad, but on a regular basis. Would you agree that I should see a different doctor at this point?

Thanks again -

[brandy]

Hi Barbie Ann,

Sorry you are feeling badly.

Ditch the sugar in the tea. After you are in remission I'd recommend stevia Sweetleaf Organic. For now
I would go with tea with no sweetener or sugar.

Make sure your tea is tea only. (No flavorings.)

Ditch the GF muffins and GF bread. Ditch any replacement milks. Ditch any product that has an
ingredient list. The problem with the GF muffins is that a lot of them are 30 grams of sugar and
the GF muffins and GF breads also have a lot of synthetic ingredients. The replacement milks
also have a lot of synthetic ingredients. You can have the replacement milk and the GF bread
once you are in remission. Replace the GF bread and muffins with sweet potato, rice, white potato,
turnips, beets, rutabagas etc.

What are you eating with your lunch bread? Eliminate GF luncheon meats for now. Stick with chicken
turkey etc that you have made.

Ditch commercial mayonaisses for now. Mayonaisse has a lot of chemicals in it. For fats stick with bacon fat, coconut oil for now. When you stop having WD try California olive oil. When you are really doing good you can try ghee and one of the paleo mayonaisses but but that may be a year or so out.

Are you on any hormonal birth control or HRT? It can prevent remission.

Almost all of us are able to stop taking blood pressure meds once we are on remission and are
able to take oral magnesium glycinate. The magnesium glycinate will reduce blood pressure
and also reduce stress. I'm not sure how the blood pressure
meds effect going into remission? Maybe Tex can chime in on this.

Consider eliminating vegetables for a week or two and go with bananas, canned pumpkin, avacados,
canned pureed squash etc (LOW FIBER).

Put nothing in your mouth that has an ingredient list on it. Stick to about 6 foods for awhile.
Billions of people around the world eat just rice and beans for meals (2 foods) for their daily diet. You will be
fine eating 6 foods for awhile. Avoid beans LOL.

For your weight: Eat every 2-1/2 hours even if you are not hungry. Force yourself to take in calories.
breakfast, mid morning meal, lunch, mid afternoon meal, dinner, mid morning/afternoon meals should
be the same foods as your meals

I did not have nausea but I know some of our members do. Perhaps they can chime in.

Accupuncture is a good choice. I think several folks have had good results for nausea with accupuncture.

Work on stress relief: massage, meditation, easy yoga, tai chi, Qugong, prayer, daily, daily, daily,

Other meds to consider--cholestyramine, Uceris

Dr---maybe make appointment for several months out. You can always cancel it if you are doing well.
Sometimes you can get a prescription for massage therapy.

I'm not sure about blood pressure meds and MC??????????????????

Mom has celiac disease. I have MC. I have to eat much narrower than her. She can eat a broad
category of foods.

After you get in remission (no WD) you can retry foods. I can now have commercial almond milk,
GF bread, salads and fruits etc but I cannot have these when I am not in remission.

Happy New Year,

[brandy]

BarbieAnn,

I've gone into remission without drugs after a 9 month reflare. It really took narrowing down my diet.

Brandy example of foods when working on going into remission:

breakfast: turkey, canned pumpkin, rice (bacon fat or coconut oil)
mid am meal: turkey, canned pumpkin, rice (bacon fat or coconut oil)
lunch: turkey canned pumpkin, rice (bacon fat or coco oil)
mid pm meal: turkey, canned pumpkin, rice (bacon fat or coc oil)
dinner: turkey, canned pumpkin, rice (bacon fat or coc oil)

THis is an example. everyone's foods will be somewhat different.

Repeat day 2, day 3 day 4 etc --Kind of like the movie GroundHog Day.

Once no WD add in overcooked green beans, overcooked carrots.

Once I narrowed down my diet and stuck to it for awhile I improved pretty fast. (I was on
no other prescription drugs.)

Now I can eat a broad category of foods.

[Kari]

Hi BarbieAnn,

So very sorry you're suffering and frustrated. You have gotten excellent advise already, so I just wanted to chime in with part of my experience. Tex mentioned that it is often one thing that we ingest every day and don't think to question that prevents us from reaching remission. I have been working on the diet for 8 years now, and still find true remission elusive. Fortunately, I feel well in general and have come a long distance from nausea and WD.

Potatoes have been part of my diet forever; chips, sauted, boiled, baked, etc. almost every day . Never thinking to question them, I figured out recently that they are not my friend, and have been doing better after eliminating them, along with all nightshades. So I highly recommend that you question every single thing you put in your mouth and experiment with testing. You already keep a food journal, so this should not be too difficult for you.

Best of luck to you and wishing you forward movement with your diet and healing in 2019, along with a very HAPPY NEW YEAR.

Love,
Kari

[Gabes-Apg]

Agree with Brandys suggestion - avoid the baked goods, gf bread, gf muffins and anything with an ingredient list!!!

I was able to resolve blood pressure issues (and get off medication) with low inflammation eating plan, low inflammation (low stress ) lifestyle and the right supplements.

Vit D3 and magnesium are key to promoting healing and getting well.

[tommyboywalker]

I had taken the budenoside very early on in my diagnosis, and the diarrhea and symptoms became worse so I was advised to stop.

Hi BarbieAnn,

I like the others here can certainly sympathize with your trials and tribulations here.

Question for you. You mention that you took Budesonide early in your diagnosis and the diarrhea symptoms became worse so you were advised to stop.

How much Budesonide were you taking and for how long were you taking it?

The reason I am asking is that I can understand why it was thought that the Budesonide may be contributing to symptoms. But do you think that there could be a possibility that your Colitis was just on an upswing of symptoms and that the Budesonide wasn't given enough time to reduce your inflammation, and that it maybe wasn't directly involved with your worsening symptoms?? I'm just brainstorming here and the reason is that Budesonide has been so very helpful to many of us here, including myself.

This is a very tough condition to figure out. All the best in your journey and please keep us posted.

[tex]

Hi barbieAnn,

I agree with Brandy, especially about the GF breads. Your comment (below) caught my eye because I had exactly the same experience.

I have been eating gluten free bread for lunch but there are times when I'm fine and then it will hit me as I said, after I've eaten the same exact thing on a different day.

The problem with GF breads is that they contain too many ingredients, some of which contain very small amounts of cross-contamination that keep our immune system activated (at a reduced level), and therefore they never allow our inflammation level to decline far enough so that we can heal. One batch may be just below the trigger level so we don't react, and the next batch may push our immune system above the trigger level. But even if they are all below the trigger level, our inflammation level will remain high enough that it is very easy for anything else to trigger a reaction. So GF breads and other baked goods are an accident waiting to happen if someone who is having trouble reaching remission continues to eat them. While we are recovering, our immune system is much more sensitive than it is after we are in remission.

And Brandy is quite correct about celiacs — we tend to be much more sensitive than celiacs when we are initially recovering. The bottom line is, I had to completely stop eating all GF breads and GF pastry mixes in order to reach remission. I'm sure I could tolerate them now, but I still avoid them.

Kari has a good point about potatoes (or any other class of foods, for that matter). Most of us can tolerate them just fine — but not every one of us.

The only research article that raises the possibility of hypertension medications triggering MC (that I'm aware of) is one that studied ACE inhibitors (and several other medications). They concluded that ACE inhibitors don't cause MC, but they might make the symptoms worse in a small percentage of cases. Here's a link to an abstract of the article:

Increased risk of microscopic colitis with use of proton pump inhibitors and non-steroidal anti-inflammatory drugs.

In my opinion, switching doctors probably won't gain any more effective medical treatment for you, but you might have to switch if you want a prescription for budesonide and your current doctor won't write it. Virtually any "new" gastroenterologist will probably insist that you have a new colonoscopy before they will prescribe a treatment, but you might find one who will accept the original diagnosis of MC, and write a prescription based on that.

Tex

[brandy]

Hi Barbie Ann,

When I wanted to try cholestyramine I asked my PCP about it and he had no problem prescribing it....and
he said he prescribes it to a lot of folks for D. My PCP considered cholestryamine to be pretty benign. I suspect if I wanted to renew budesonide he would re prescribe it for me.If you want to try another drug your PCP may work with you on a scrip.

My second gastro doc was willing to accept my pathology report and diagnosis but second gastro wanted
to do a mast cell count from my original slide. A second pathologist did a mast cell count from my original slide
under the direction of GI doc #2. GI doc #2 who is a teaching hospital/researcher doc does not require
her new patients to get another endoscopy and colonoscopy. She is willing to work with the results from prior
testing. She does not like to subject her patients to additional colonoscopies if it is not necessary. She is the exception.
Tex is right. We get a lot of folks on the board that have new GI docs insisting on new colonoscopies and
endoscopies even if one was done in the prior 12 months. Colonoscopies and endoscopies are not
without risks (think Joan Rivers) so be prepared for this discussion and be prepared to ask if they can work
from your original biopsy slides/ pathology reports.

If you go to gastro appointment consider have some kind of goal you want to achieve.

Med options for MC are generally:

pepto bismol protocol, cholestyramine (or some of the other bile acid drugs) budesonide, uceris
more experimental would be LDN--see thread at top

Not everyone responds to budesonide. If I recall the studies I think about 80% of folks with MC
respond to budesonide but the other 20% do no.

It is possible to go in remission on diet alone. A lot of folks have on the forum have. Both budesonide and
cholestyramine worked great for me but I had severe side effects on them such that it is not an option
for me to go back on them. To get out of my last flare which (was pretty rough) I did it by diet alone.

When I am doing poorly and I have to take a prescription or supplement I find I do better taking them at
the end of lunch after eating (instead of first thing in the morning on an empty stomach).

Hopefully my upstream thread was not too harsh. It makes me sad that patients needlessly suffer by not
getting any basic diet info from gastro offices. I needlessly suffered for 6 months because no medical entity
told me to avoid dairy, avoid raw, avoid fruit, avoid gluten and avoid processed when I was in an IBD flare.

[barbieAnn]

Thank you all so much for your responses.

I had tried the cholestyramine but it did not have any effect on me. I also took Uceris with no improvement = however, I'm wondering if it's because of my diet. My problem is that I am scared to lose any more weight. I have already been told that I am dangerously thin, and I know once I stop the bread, I will lose even more. Are there any other breakfast suggestions that you think would be safe for me - I will stop the cold cuts - I've been eating mainly Boars Head Turkey breast. That's about it. I've been cooking turkey breast almost every weekend, and then eat the leftovers for sandwiches. I've been sticking to potatoes - but I'm wondering now if that's the issue. It's so hard, because like I said previously, there are days where I can eat the exact same thing, with different reactions. How about eggs - should I avoid those as well?

It's funny because my last gastro doc told me to eat anything I wanted. This was because he thinks my issue is IBS. He did not believe the pathology report which I totally do not understand.

The budesonide - I took for about 2 weeks, and I was waking in the middle of the night with severe diarhea -worse than usual. I was also experiencing heavy duty nausea while I was on it.

[Gabes-Apg]

Weight gain is more likely to happen when there is minimal inflammation.

Eating items like GF bread for hopeful weight gain, but instead causing inflammation and ongoing issues is not beneficial.

as per the information in the stage one eating plan in the guidelines to recovery, best to avoid eggs at first.
Breakfast options: safe proteins and well cooked veges.

If you have read through some of the posts in the success stories area, you will see that eating safe proteins and 1-3 safe veges each meal is what others have done, and it works.
It is not forever eating plan, it is just a means to calm the inflammation cycle.

I think your previous attempts with medications were limited in their success due to eating plan and possible low Vit D3.

[tex]

The budesonide - I took for about 2 weeks, and I was waking in the middle of the night with severe diarhea -worse than usual. I was also experiencing heavy duty nausea while I was on it.

That sure sounds like an adverse reaction to budesonide. Some people simply cannot tolerate it. Uceris would probably have a similar effect (since it's also a form of budesonide).

Boar's Head Deli meats are safe for most of us as long as the slicing machine is not used for meats that contain gluten, or it's cleaned before slicing the meat that you purchase. I would think that Boar's Head turkey, especially, should be some of the safest turkey that you could find. But I can't say I've tried it because I've never seen Boar's Head meats in the small towns around here where I always shop.

You can get extra calories by eating fatty meat. Did the EnteroLab results show that pork was safe for you? If not, virtually all of us can safely eat lamb, and lamb contains a lot of fat. Can you eat avocados? They contain a lot of fat.

GF bread contains calories because it's made from grain. Farmers and ranchers have always fattened livestock by feeding them grain. To avoid the contamination in processed foods such as GF bread, don't eat the bread — eat the pure grain instead. Can you safely eat rice? Sensitivity to rice is very rare. Rice would be much safer for you (and it would contain at least as many calories as GF bread).

Anyway, you might consider some of these options.

Tex

[Tor]

I have been adding sugar to my tea [...]

Have you tried quitting all caffeinated drinks for several weeks?

Coffee and tea are my main triggers besides gluten. This was hard to figure out because the time it took for the gut to heal. I also had to quit both coffee and gluten, neither one alone did the trick. A cup of coffee or tea now gives me D. in minutes while I seem to be able to handle occasional gluten accidents.

I find stayin off caffeine very hard because of the fatigue that often accompanies an overactive immune system.

—Tor

[barbieAnn]

I've actually been drinking decaffeinated tea = if that makes a difference.

Tex, I wanted to ask you - would you say that corn tortillas would be okay in place of the bread? Yes I can eat pork and I am going to try the lamb - that is one of my safe foods as well.

I'm just at a loss as to what to eat for breakfast - I always have to eat something in the morning and it's usually 2 slices of toast, sometimes I have a hard or soft boiled egg, as eggs are also a safe food for me. Then mid-morning, raisin toast - lol - I know, you can see I like my bread. I just don't know what to substitute it with that would make me feel full.

Thank you all!