Recently Diagnosed with MC

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BusyMom
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Post by BusyMom »

I feel like I am finally making headway and want to thank you all for your wonderful info and advice. I am on my 4th day of feeling good; I'm sure Entecort and strict diet are both contributing. I'm being very strict about my gluten and dairy intake, and only eating cooked veggies, along with bananas for now. I'm down to only one pepto tablet and I think tomorrow I will stop any more pepto. I'm sure there will be set-backs when I try to add in more foods in the coming weeks, but it is SO NICE for just a moment to feel somewhat normal. And I feel like I won the lottery in finding out my exercise supplement is GLUTEN FREE!! So far so good.

I have a follow up appt with my doctor from my recent hospital stay and have explained to them exactly what kind of vitamin D test I would like, to ensure I'm covered from that respect. But as I'm researching, I have a couple more questions that came up.

When I was in my early 20's, I was diagnosed with hypoglycemia (I do not have diabetes and it was discovered because I kept shaking/fainting). I was told to opt for complex carbs (whole wheat), low-fat protein, and yes, lots of fiber. I remember being told that it was very important that I avoid "white" foods (potato, rice, bread, etc) and opt for whole wheat instead, and green veggies were best option for me. This is pretty much the lifestyle I had adopted.

So I'm a little confused with how to attack the fiber and whole wheat issue. I'm not sure how to balance the fiber need for hypoglycemia with the low fiber need for the colitis. Also, I am buying gluten-free whole-wheat breads, whole-wheat rice, but that seems to contradict what I can best be doing for my colitis. Any thoughts?
Leah
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Post by Leah »

Hi Busy Mom. So nice to hear that you are doing so much better. No need to add any foods in for now. Give your gut as much time as you can to heal. If you are going to add foods, they should be proteins.

Are you sure that you are still hypoglycemic? Have you had your blood sugar tested recently? The reason they tell you to eat fiber and "whole" grains is because these carbohydrates go into your blood stream more slowly then processed carbohydrates.…. BUT YOU DON'T HAVE TO EAT LOTS OF CARBOHYRATES at all. period. Vegetables are carbohydrates and we can all exist easily without grains. Many of us here don't even eat any grains., but if you wanted to switch to brown rice ( instead of white), I'm pretty sure that it would be fine. Sweet potatoes are more fibrous then white and seem to sit well for most of us. You shouldn't be eating any "whole wheat" though because if it's made from WHEAT, it's going to have gluten.

Keep us posted as to your progress.
Leah
BusyMom
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Post by BusyMom »

I need to correct myself. I said I'm eating whole-wheat gluten-free bread. I meant to say whole grain. I buy the Udi's Gluten Free and they have option of white or whole grain. I figured with the hypoglycemia, I should be choosing the whole grain.

I have not been tested since I was diagnosed. Is that a diagnosis that can change with time? I have not had any experiences of dizziness/fainting since I changed my diet in my 20's, so not sure if that is something that I can "outgrow"?

I am desperate in need of something to snack on. Any suggestions on something fairly safe to try? I pretty much live on chicken, ground turkey, potatoes (white and sweet), rice (white and brown), and gluten-free bread with cooked asparagus, cooked green beans and bananas. I'm scared to try something else. (I've tried cooked carrots, applesause, and eggs, but wasn't 100% sure my body was ok with it)

Michele
Leah
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Post by Leah »

Hi Michele. Now I understand the bread thing :)
Snacks are tough, but I have had good luck with "Simply Ruffles" potato chips which are low fat and only consist of potato, safflower oil, and sea salt. I also can eat organic corn tortilla chips. Since you are OK with the GF bread, then you probably can try some GF Chex cereals with maybe almond milk? I sometimes have them for breakfast, but I also just eat them out of the box . Besides peanuts, I was always able to eat most tree nuts and nut butters. When I was recovering, I ate rice cakes spread with almond butter and a tiny bit of jam. Avocado and black olives were also on my list.

We are all so different, so I am hoping someone else will chime in.
You are doing great. One day at a time. Just keep reminding yourself of how much better you feel.

Leah
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tex
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Post by tex »

Hi Michele,

I don't have much to add to what Leah suggested — she did a good job. I was just going to mention that I occasionally (very infrequently) have hypoglycemic symptoms. I have no idea why that happens, because I'm not a diabetic either. The odd part is that more often than not, when it happens, I will be taking a shower, getting ready for bed. I usually remedy it by eating a quick snack of Corn Chex, or Rice Chex, sweetened by mixing in a small amount of Vanilla Chex or Cinammon Chex, with almond milk.

I have never considered eating fiber for relief of hypoglycemic symptoms (of course, there's a small amount of fiber in the Chex cereals).

Be careful with brown rice (and other sources of fiber) because quite a few members seem to tolerate white rice just fine, but brown rice causes problems. As you are probably aware, the main difference between the two is that the hull (which is mostly fiber) is removed from brown rice in order to make white rice.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Heady
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Post by Heady »

Hello Michele
I was diagnosed June 2012 with type 2 diabetes(diet only). I get the diet dilemma. The colitis diet goes against everything dietitians teach us. To equalize blood sugar it is always good to eat a protein with carb as the protein will slow how fast you process the carb. Thus lessening the sugar/carb crash later when your blood sugar plummets. If you are having blood sugar prob. I suggest getting yourself a meter & do some testing to see how low your blood sugar plummets at different times during the day and after exercise or 2hrs after meals. It is also beneficial to eat balanced meal every 5hrs. Do not miss meals!! The bulk of my diet pre MC was meat& raw veg. Very small amounts of starchy carbs. Now the bulk of my diet is very lean meat with mushy veg and small amounts of starchy carb. I do exercise 30min 2X/day. My dilemma was to figure what type of snack to eat at night before bed. I have an organic brown rice cake with meat sliced on it. I'm only eating lean meat, white rice, potato(white&sweet),squash,green beans,carrot,SilverHills gluten free bread, and water. I have not added anything to my diet as I have now been 10days without the big D and don't want to upset healing. Best wishes on your MC journey
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014

I am thankful for my struggle because without it I wouldn't have stumbled across my strength.

What are you willing to let go of so you can live the life you know you deserve?
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nerdhume
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Post by nerdhume »

BusyMom,
I had low blood sugar episodes in my 20s bad enough to have seizures. I also had controlled this for 40 year with fiber and whole grain everything. Then had to switch to the white stuff.
It seems odd, but a slice of bread spread with peanut butter, or coconut oil and jam will not cause the blood sugar spike and rapid fall that is so familiar. A slice of bread alone will.
There is a world of information about the glycemic index on the internet. Try to use that when planning your snacks or meals.
I'm just starting to figure it out too.
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
BusyMom
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Post by BusyMom »

Well apparently I under-estimated how good I have felt this week. I ventured out tonight for a fish taco, and by fish taco I mean a corn tortilla w/grilled mahi mahi, plain. To be completely honest, I took a few drops of the cilantro sauce (mostly cilantro, onion and jalepeno) and just dripped a few drops on each one, I know I shouldn't but I was desperate to eat something w/a taste. Thought I was playing it fairly safe, but was wrong. The gas and abdominal pain kicked in about 20 minutes after I finished.

If MC is in the colon, how on earth do these food sensitivities start taking effect so fast? And is there any home remedies for making gas and pain subside? I want to put a heating pad on my stomach but thinking that since colitis is inflammation, that would just make it worse.

Happy streak ends. :cry:
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Heady
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Post by Heady »

During my horrid painful abdominal cramping and the 15 trips to the loo I did sit on a heating pad for my back pain and had a wheat bag on my abs to relax the muscle spasms. It helped me to relax a bit. Or sit in a warm bath with Epsom salts. My best advice is for you to stick to basic one ingredient foods that are not considered trigger foods. No spice. I even cut out salt &pepper. Before I found this site I had a spoonful of salsa on a couple gluten free nacho chips. I spent the entire next day in the can. So not worth it. I have been diligent in following a very strict diet(no meds)and am feeling the best I have been since last August. Entocort will mask most side effects of MC So eating a basic non trigger diet during this time is essential! Keep in mind that the healing time can take many months and that challenging new foods on a gut that is still in the healing process could set you back in your healing journey.
Keep on track and be patient. The rewards are life altering!
Diabetic DX June 2012
Diverticulosis/ MC DX Feb.2014

I am thankful for my struggle because without it I wouldn't have stumbled across my strength.

What are you willing to let go of so you can live the life you know you deserve?
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tex
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Post by tex »

Michele wrote:If MC is in the colon, how on earth do these food sensitivities start taking effect so fast?
Because the disease was originally incorrectly described in the medical literature, doctors don't understand MC. Like Crohn's disease, MC can (and often does) affect any part of the digestive system.

Such a fast response indicates a mast cell response, due to an IgE-based reaction in the upper part of the GI tract. This isn't even on the radar of most GI docs, because MC is described as a disease driven by T-cell-based inflammation (in the colon).

IMO, Heady's advice is right on target.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
BusyMom
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Post by BusyMom »

Thanks Tex. That makes more sense. So that leads me to another question.

Can biopsy's be taken of the smaller intestine or stomach and find MC? My older sister had stomach issues her whole life, and about 3 years ago, had her colon removed. She suspects we may have the same thing going on, but commented that since her colon was removed, there is no way to find out. She is still having issues.
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tex
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Post by tex »

Michele wrote:Can biopsy's be taken of the smaller intestine or stomach and find MC? My older sister had stomach issues her whole life, and about 3 years ago, had her colon removed. She suspects we may have the same thing going on, but commented that since her colon was removed, there is no way to find out. She is still having issues.
Yes. The markers of LC (and CC, in some cases) can be found in other digestive organs upstream of the colon. But the doctors won't call it MC (because it is not within the domain of the official medical description of MC). Because of that, they typically try to associate it with celiac disease. They will call it "intestinal lymphocytic epithelioganglionitis", or "lymphocytic gastritis", or "intraepithelial lymphocytosis in the absence of atrophy", for example.

The primary diagnostic marker of LC is increased lymphocytic infiltration (aka intraepithelial lymphocytosis) into the epithelia of the colon. Consider these "other diseases" described in the small intestine and the stomach:
CONCLUSIONS: A subset of patients with gastrointestinal motility disorders exhibit the combination of intraepithelial lymphocytosis and myenteric ganglionitis in full thickness biopsy specimens of the small bowel. We suggest calling this entity 'intestinal lymphocytic epithelioganglionitis'.
Intestinal lymphocytic epithelioganglionitis: a unique combination of inflammation in bowel dysmotility: a histopathological and immunohistochemical analysis of 28 cases.
Lymphocytic gastritis (LG) is an uncommon chronic gastritis characterized by lymphocytosis of foveolar and surface epithelium. Lymphocytic gastritis is associated with celiac disease, Helicobacter pylori (HP) gastritis, and varioliform gastritis, but its topology and severity with respect to the associated entities have not been studied in detail.
Lymphocytic gastritis: association with etiology and topology.
Celiac disease (CD) is a chronic inflammatory disease of the small bowel that is characterized by increased intraepithelial lymphocytes (IELs) and villous atrophy of the mucosa. It is unclear how often intraepithelial lymphocytosis in the absence of atrophy is a manifestation of gluten sensitive enteropathy.
Lymphocytic Duodenosis and the Spectrum of Celiac Disease

This article provides a good overview of many of the other aspects of MC that most GI docs seem to be unaware of, and how MC and celiac disease overlap in the small intestine:

Microscopic Colitis: Clinical Features and Gastroduodenal and Immunogenetic Findings

These articles show how the markers of CC (thickened collagen bands in the lamina propria of the epithelia) can also be found in the stomach and the small intestine:

Collagenous Gastritis Associated With Lymphocytic Gastritis and Celiac Disease

Gluten-Free Diet and Steroid Treatment Are Effective Therapy for Most Patients With Collagenous Sprue

Yes, as I have pointed out before, a colectomy (removal of the colon) does not resolve MC, contrary to medical opinion. One must avoid the same foods, with or without a colon, in order to maintain remission from symptoms. This is true because (IMO), what happens in the colon actually involves only a relatively minor part of the full spectrum of MC.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Toritagg
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Post by Toritagg »

Hey Busymom! I am moving to Castle Rock next month and currently live in Colorado Springs- and Dr. Lewey is my doctor! Just got diagnosis last week after a lifelong battle of trying to figure all of this out! AND I am also an athlete. I absolutely LOVE to run and to life weights and spend at least 5 days a week at the gym etc. I have had a struggle with all of the bloating, gas, D and C back and forth-- and with the strict diet that I am currently keeping-- getting enough foods and carbs etc to fuel huge workouts has been a challenge. I totally get how you are feeling! Some days after I work out - I am SO tired and spent the whole rest of the day- no matter what I eat after/before etc. I have followed a paleo style diet for a few years already (because of digestive issues) and honestly it worked wonders in my life! I felt great! I would have the occasional gluten-free treat- here or there- but remained grain-free and DF and SF for years (still staying away from certain veggies like broccoli or cauliflower etc- that would cause reaction) - and then somtehing changed in January :( My symptoms all came back and the D started- and massive bloating and horrible gas etc. All of a sudden I couldn't tolerate eggs anymore, then all sugars (fruits inculded) then sweet potatoes went, then it was nuts, and then it was coconut :( WHich was SO hard for me! I literally live on meat and veggies right now. Dr. Lewey is great - and I actually go back to him in 2 weeks-- He has Rx me Budesonide but I have not started taking it yet- bc I am nervous about the reaction adn about it causing more C (since I keep fluctuating between the two at this point). I hope your races go well! I understand how important it can be to still be able to workout if you love it so much like i do! :)
BusyMom
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Post by BusyMom »

Hello Toritagg. We will be neighbors; I'm in Highlands Ranch. :grin: I am so sorry to hear everything going south for you this last January. I can only imagine how frustrating that is after having a limiting diet that seemed to be working. The Budesonide seems to be working well for me, no side effects and kicked in within a week of starting it. I was worried it would cause C, but so far I've been good (prob because of my granola bars below). I am nervous though to see what is going to happen when I start trying to ween off it, hopefully they can do it slowly.

My first appt with Dr Lewey is May 12th and I'm anxious to talk to him. I bummed however that Enterlab messed up the shipping of my food testing kit, and I will not have results by the 12th to share with Dr Lewey; hopefully will have a week after. Have you done the food testing yet?

How are you with bananas and applesauce, if they are cooked? I have been making homemade granola bars that seem to agree with me right now, probably because I'm cooking it all (3 mashed bananas, 1/3 cup unsweetened applesauce, 2 cups oats, 1/4 cup unsweetened almond milk, 1 tsp vanilla, 1 tsp cinnamon; I throw in 1/2 cup craisins for a little taste). Very bland, but I spread almond butter on top.

Other than the above, I'm still eating lots of chicken and ground turkey, rice and g-free bread. I'm starting to cook different veggies and eat them very last. I'm hoping my test results give me more confidence to try something else, cause right not it's just not worth trying. (I have a race this Sunday in the Springs so not changing anything right now!)

One more thing I have been doing when my gas and bloating was hurting tons, I started yoga before bed each night. I just googled "yoga poses to get the bowels moving" and it could be coincidence with the med's and the diet change, but I started feeling better each night I was doing them. I hope things continue to improve with you and thanks so much for reaching out.
Toritagg
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Post by Toritagg »

SO funny because I will be at Dr. Lewey the SAME DAY! May 12! Go figure.

I cannot tolerate any fruit or nuts currently. I also do not eat any grains at all (so that includes oats, rice, etc). Its a bummer. Glad to hear the budesonide is working so well for you. I am super nervous about the potential side effects and have not started mine as of yet. Thanks for the yoga info! Totally will try!
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