BRAND NEW TO CC - Questions galore!!

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TREESE
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BRAND NEW TO CC - Questions galore!!

Post by TREESE »

Good Morning - I will learn how to properly search for answers on this forum, but for today, my nerves are overwrought so I ask your kind indulgence: I'm 63, and was diagnosed just this June with CC. I have always taken care to watch my health. Very thin and normally ate about 6 times a day just to keep my 103 pounds on me. Lose weight Very easily. 30 years of Spinal Issues, but NEVER abused Pain Meds. Also, Osteoperosis. Doc doesn't know why this CC came on me. So... a few pressing questions in need of immediate answers, if you are so moved. And may I thank you ahead of time for your patience!

VALIUM... is it safe with Collagenous Colitis? I use it as a Muscle Relaxer in low doses, ONLY when needed. (Spinal surgery in 2010, plates and screws in spine)

Tylenol alone for Back Pain is useless. Can you Name a possible Med my Surgeon might prescribe in place of the Vicodin w/ Ibuprofen I now have? Not taking it presently, but have lost so much weight that I fear for the stability of the metal cage in the spinal bones of my Back (Down to 92 lbs from 103lbs).

Venlafaxine (Effexor) is an SNRI, I believe. I read in the Forum that SNRI's might cause CC. Is that true?

Trying to gain the weight back, so Any ways to ADD Safe Calories is what I am looking for.

For example: Is RICE Protein a good option for adding back Protein into my Diet or is it too brown-rice like?

How about safe fats...Flaxseed is a good source? Any others?

Almond Milk? Are the ground Almonds too harsh? Is Rice Milk better? Lactose seems to be an issue suddenly.

Presently doing the white rice, white toast thing. No Caffeine yet, no milk, no fried foods, Bananas work, oatmeal seems good, Chicken breast, cheerios, rice krispies, cooked carrots, chamomile tea, water, even no-fat plain yogurt with no fruit but the bananas I add myself.

Thank You so very much for your time! All of your Replies will be surely appreciated!! TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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twirlitgirl
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Post by twirlitgirl »

Hi Treese,
:welcome: :fam29:
You are in the right place, take a deep breath and read all the newbie and success stories from everyone to help and guide you along the way to find what works in your life and your circumstances and defintely your lifestyle. I was so happy to find this forum it changed my life and helped me when I was feeling very alone and lost in this misunderstood disease, you aren't alone anymore.
I hope you feel better soon.
:pigtail:
diagnosed with LC by biopsy
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
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tex
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Post by tex »

Hi Treese,

Welcome to our Internet family. To address your questions:
Treese wrote:VALIUM... is it safe with Collagenous Colitis?
Yes, it will not normally have an adverse effect on CC.
Treese wrote:Tylenol alone for Back Pain is useless. Can you Name a possible Med my Surgeon might prescribe in place of the Vicodin w/ Ibuprofen I now have? Not taking it presently, but have lost so much weight that I fear for the stability of the metal cage in the spinal bones of my Back (Down to 92 lbs from 103lbs).
Tramadol. Topical NSAIDs can also be safely used by many people who have CC. Narcotic painkillers will not exacerbate CC, but we have to be careful to avoid an impaction risk, because they can drastically reduce motility in the gut.
Treese wrote:Venlafaxine (Effexor) is an SNRI, I believe. I read in the Forum that SNRI's might cause CC. Is that true?
Yes, it's true. Not everyone is vulnerable to that effect, but many, many members here can trace the origins of their MC back to their use of an antidepressant, including SSRIs, SNRIs, amitriptylene, etc.
Treese wrote:Trying to gain the weight back, so Any ways to ADD Safe Calories is what I am looking for.
Farmers and ranchers use grains to fatten animals, and grains also put pounds on people. We need protein to heal the gut, however, so the emphasis should be on protein. Turkey, lamb, and white rice are the safest foods for most of us.

But the fastest way to restore our ability to gain weight is to stop eating the foods that generate the inflammation that causes CC, so that our gut can heal. Almost all of us have a serious malabsorption problem initially, so that we are not able to absorb and utilize the nutrients in our foods. That's the reason why some of us continue to lose weight while the disease is active.
Treese wrote:For example: Is RICE Protein a good option for adding back Protein into my Diet or is it too brown-rice like?
I've never understood why so many people prefer to eat a processed food, when the real, whole food is so much healthier, and so much cheaper (to say nothing of so much safer for someone who has multiple food sensitivities). In general, rice protein would be safe, but most of these products are very risky because they tend to be loaded with so many unnecessary ingredients that it's almost impossible to find one that does not contain an ingredient (or 3) that will trigger CC or prevent us from recovering from CC.
Treese wrote:How about safe fats...Flaxseed is a good source? Any others?
Flaxseed oil is OK, as long as you don't overdo it (because any oil can become a laxative due to it's lubricating characteristics). Flaxseed hulls though are a very high fiber item, and ground flaxseed is used as a home remedy for constipation. Safer fats can be found in animal fat, avocado, coconut oil, and olive oil, for example.
Treese wrote:Almond Milk? Are the ground Almonds too harsh? Is Rice Milk better? Lactose seems to be an issue suddenly.
Many of us cannot tolerate almonds (because of the fiber, but almond milk is well-tolerated by most of us. Rice milk works for most of us, but Rice Dream contains a tiny amount of barley malt that is supposedly safely under the 20 parts per million limit for gluten-free labeling. Some of us who are extremely sensitive to gluten cannot tolerate Rice Dream, because of that trace amount of barley malt. Hemp Milk works for some of us, but for others it can cause minor bloating. We are all lactose-intolerant as long as our small intestine is inflamed, and most of us are also sensitive to casein, the primary protein in all dairy products. The casein is the main problem with dairy products, because it causes our immune system to produce antibodies to casein, and this promotes the T-cell infiltration that causes the inflammation and the collagen band thickening that leads to LC and CC.
Treese wrote:Presently doing the white rice, white toast thing. No Caffeine yet, no milk, no fried foods, Bananas work, oatmeal seems good, Chicken breast, cheerios, rice krispies, cooked carrots, chamomile tea, water, even no-fat plain yogurt with no fruit but the bananas I add myself.
If that white toast is made from bread that contains wheat flour, that is a primary source of your intestinal inflammation. Virtually all of us here are sensitive to gluten, even though the blood tests used by doctors are not capable of detecting it. Most of us here are also sensitive to oats (even pure oats). That means that cheerios are out. All ordinary cereals (such as Rice Krispies) contain barley malt, which is gluten, and therefore a no-no. Safe cereals that are free of barley malt are available in health foods stores, and General Mills makes at least 6 different types of gluten-free Chex cereals that are available in most supermarkets and also smaller grocery stores. Look for the Gluten-Free label on Rice Chex, Corn Chex, Vanilla Chex, etc. Yogurt is loaded with casein, and should always be avoided.

I made the same mistakes when I was just starting out to treat the disease. I thought that foods promoted as "healthy" were actually healthy. It seems that's not the case, unfortunately.

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

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.
TREESE
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CAN YOU ANSWER A FEW MORE QUESTIONS, PLEASE?

Post by TREESE »

Tex, I am just so shocked by what you wrote and also Thrilled to have some Insight into this whole mess. May I ask a few more questions, please?

Looking for at least a day of safe foods to start with:

From what you said, I realize Oats and White Bread are OUT. What kind of Bread can I use, then, and what kind of Stores sell it? I have Fairway, Stop and Shops, Shop Rites, and Whole Foods by me. Or must it be a Special Health Store like a GNC?

Cereal, I can now probably find based on what you told me.

Yogurt is out, then. What do I do for safe dairy? Or for Calcium. I was eating Swiss cheese and part-skim mozzarella. Since I have Osteporosis, I need Calcium. (I do take a supplement Caltrate-D)

Protein...Is Chicken Breast still ok? Or must it be Turkey Breast...or just any Turkey part?

What else can I add for Protein? is White Albacore Tuna ok? Any Eggs? Chicken Soup with noodles?

Vegetables... Cooked Carrots or another Vegetable instead? What vegetables are safest?

Fruits... apple sauce, baked apple, apple juice or no apple? Strawberry, pineapple? BANANA is good, right?

TEA - Can I drink any Tea with Caffeine or must I stay on Herb Tea?

I feel at a tremendous loss right now, so thank you for taking time to assist me!! I ordered the Book by Wayne Persky last week, but haven't gotten it yet. So, I'm rather frightened by this whole matter. Bless you and thank you!

TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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Post by jlbattin »

Treese,

Welcome! You will find a great bunch of folks that have either 1) already walked down this path or 2) are walking down this path right now. This place is the only thing that keeps me sane some days. Great folks on here! I was just diagnosed about a month ago after 5 weeks of diarrhea, bloating, pain, cramping, etc.

I can't answer all your questions, but I would start with an elimination diet. I eat only chicken and rice or turkey and potatoes and 1 banana a day. I have done that now for over 4 weeks. You have to find what works for you because all of our bodies react differently to different foods. If you do a search for elimination diet, there is tons of info about safe foods. I would not worry about bread or fruits. Most people with MC cannot eat fresh fruits while they are trying to heal, and some can never do it again. I'm not a big veggie lover so I tried green beans, but soon cut them out and found they were causing lots of bloating for me. Any veggie you eat must be really overcooked. The fewer foods you eat to begin with, you'll be able to tell if your body is doing ok with them, and then you can add 1 back in at a time for a period of 3-4 days to see how you do.

If caffeine didn't bother you before MC, then you're probably ok with it now, although I have seriously cut back my consumption. I drink 1 cup of coffee in the morning and sometimes 1 glass of iced tea in the afternoon. The rest of the time I drink water.

While you are healing, your body is not able to absorb nutrients so I wouldn't worry about anything except for the vitamin D3, which is critical for your body to heal. I also use some spray magnesium to help. You'll be able to fix your nutrients deficits once you start healing.

Many of us have done the stool samples food sensitivities tests from Enterolab. That tells you if you are sensitive to gluten, soy, dairy, eggs, and then there's another test that gives about 11 other very common food sensitivities. I did that and I have a place to start now.

Again, welcome. This is the only place where you don't feel like you are going through this all alone and can get the answers and support you need. Someone else will answer the questions I'm not able to!
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
TREESE
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QUESTION ON INGREDIENTS?

Post by TREESE »

I guess this is a PS to my previous Reply...

What DO I need to look for in a LABEL before purchase?

Reading a Label on this Huge Container of Rice protein I had just bought, thinking it was a good thing...INGREDIENTS are Enzymatically processed rice protein from certified organic, whole grain, sprouted brown rice. It says gluten free and without pesticides, herbicides, and no GMOs or PCBs. Also says, without soy, milk, eggs, wheat, corn, nuts or preservatives. NAME - NutriBiotic Raw Organic Rice Protein Plain - Vegan - 80% Protein.

Does THAT Label and THOSE Ingredients mean it Safe for CC?

How About in a PROBIOTIC? I am taking One Probiotic Capsule daily to help my stomach heal, as the Doc recommended I do. I chose Polyflora O. It's for my blood type as per the D'adamo Blood Type Website which says it's best. Is there a better one for this Condition?

I will learn, but for now, you are a God-send! Thank You, again!
TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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jlbattin
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Post by jlbattin »

In response to your last message, this forum was very helpful to me:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=52

It lists words for gluten, soy, dairy, etc. that you'll need to learn as you begin to read labels.
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
TREESE
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Post by TREESE »

To Thank You, Jari - I hope I am Replying in the correct way. I am trying to learn how to do this properly.

When I see my Doc next, I will ask about that Test you suggested. And thank you for your encouragement!

Elimination Diets - I assume you meant there is a Section on this Forum called Elimination Diets? Sounds helpful! How do I search for that?

Feel better, Jari!
TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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Post by Chemgirl »

You're getting lots of great advice!

As far as reading packages, at least at first, you are better off avoiding packaged foods. I know it's annoying, but packaged food has a lot of additives that can cause irritation while healing. Even deli meats can be a problem since they are injected with sodium and preservatives.

IMO, a true elimination diet should contain whole foods only. Things to try include rice, cooked turkey, homemade broth, cooked squash and sweet potatoes. Keep the list down to only a few things. To be honest I used chicken instead of turkey and it worked for me, so you can try it, but if you notice issues then switch out the chicken for turkey. Same goes for the rice and sweet potato. People react to different things, so if after a few weeks on the diet you don't notice improvement, then start tweeking it. Keep it simple so it's easier to identify problem foods.

A few tips: fiber is not your friend, so peel and cook any veggies you do try. Avoid seasoning for now. I know it's boring, but you don't want to irritate your insides with pepper etc. Watch out for injected meats. For example, the pre-cooked chickens at most grocery stores are injected with a brine to make them juicy. You might react to something in the brine so it's best to avoid. Also check packaging on raw chicken because it can be injected to make it look plumper.

This is definitely a challenge, but if you keep it simple at first you can eventually add in more foods until you are eating a reasonable diet. The key is to allow yourself time to heal.
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Post by Chemgirl »

I wanted to add that probiotics made me much much worse in the beginning.

Tex would be able to explain it better than I can, but basically they can cause irritation while we are healing.

If you try the elimination diet and are still having trouble, I would stop the probiotic if I were you.
TREESE
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The Section You Suggested - Excellent!!

Post by TREESE »

Thank you, again...I followed your LINK!!

TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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Post by Lilja »

Hi Treese,

Welcome to this excellent, knowledgeable and friendly forum!

You have received some good answers. I only have one: If you love coffee, make sure that you drink freshly brewed coffee, and not coffee powder (I don't know the exact English word for it); it is dried and put on jars. Many of us react to coffee powder.

Lilia
PS: It's called "instant" and I'm getting forgetful... :grin:
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
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Post by tex »

Treese wrote:From what you said, I realize Oats and White Bread are OUT. What kind of Bread can I use, then, and what kind of Stores sell it? I have Fairway, Stop and Shops, Shop Rites, and Whole Foods by me. Or must it be a Special Health Store like a GNC?
There are gluten-free breads. But as Jari pointed out, most of us do better if we avoid all processed foods, and cook from scratch. Baked foods in particulare are often sources of problems that cause setbacks in recovery programs. If you must have bread, the most popular brands seem to be Udi's and Rudy's. Or if you are up to baking your own, there are GF mixes that will produce better bread. If you can't find these in stores, they are available online. Examples are Breads From Anna and King Arthur Flour GF mixes.
Treese wrote:Yogurt is out, then. What do I do for safe dairy? Or for Calcium. I was eating Swiss cheese and part-skim mozzarella. Since I have Osteporosis, I need Calcium. (I do take a supplement Caltrate-D)
When a patient shows signs of osteoporosis doctors almost always jump on the "more calcium" bandwagon. They prescribe calcium supplements, and then they wonder why that doesn't seem to have any significant effect on the patients bone density ratings in the long run. But the truth is, almost everyone in all developed countries has plenty of calcium in their diet, and if they take supplements then they are virtually guaranteed to have too much calcium in their diet. Too much calcium can have worse consequences than too little, since it can promote heart attack and other cardiovascular issues.

The key to resolving an osteoporisis problem is to make sure that we have plenty of vitamin D and magnesium in our body. Our body absolutely cannot absorb and utilize calcium to strengthen bones without adequate vitamin D and magnesium. If we have plenty of vitamin D and magnesium in circulation, them almost everyone's diet contains more than enough calcium to build strong, healthy bones.

Most of us use Almond Milk, Coconut Milk, or Hemp Milk. It contains just as much calcium as cow's milk (in some cases, it contains more), and it is far less likely to cause inflammation problems.
Treese wrote:Protein...Is Chicken Breast still ok? Or must it be Turkey Breast...or just any Turkey part?
Chemgirl did a good job of answering those questions, and I certainly agree with her observations.
Treese wrote:What else can I add for Protein? is White Albacore Tuna ok? Any Eggs? Chicken Soup with noodles?
Eggs may or may not be safe for you. Ditto for tuna. About half of us react to a protein in egg albumin (egg white). You would need to order stool tests from EnteroLab in order to determine whether those foods cause your immune system to produce antibodies. The alternative is to do an elimination diet followed by trial and error testing.
Treese wrote:TEA - Can I drink any Tea with Caffeine or must I stay on Herb Tea?
Lilia had a good point about coffee. If coffee caused you to run to the bathroom soon after drinking it before your MC symptoms began, then it will continue to do the same now. If it was OK then, it will probably still be OK. Some of us can tolerate black tea better than herbal tea, but that's an individual issue.
Treese wrote:I feel at a tremendous loss right now, so thank you for taking time to assist me!! I ordered the Book by Wayne Persky last week, but haven't gotten it yet. So, I'm rather frightened by this whole matter. Bless you and thank you!
If you would like to have a PDF copy of the book, to read on your computer (using Adobe reader or Adobe Digital Editions, or some other PDF reader), or a copy properly formatted for a digital reading device (such as an iPad, Nook, Kindle, etc.), just tell me which type of device (or which format) you would prefer, and I'll be happy to attach a copy to an email and send it to you so that you can get started reading immediately.
Reading a Label on this Huge Container of Rice protein I had just bought, thinking it was a good thing...INGREDIENTS are Enzymatically processed rice protein from certified organic, whole grain, sprouted brown rice. It says gluten free and without pesticides, herbicides, and no GMOs or PCBs. Also says, without soy, milk, eggs, wheat, corn, nuts or preservatives. NAME - NutriBiotic Raw Organic Rice Protein Plain - Vegan - 80% Protein.

Does THAT Label and THOSE Ingredients mean it Safe for CC?


The label of that product gives the impression that it should be safe for us, but anytime I see 2-dollar phrases such as "enzymatically processed rice protein", a red flag goes up. Why eat something that is so intensely processed when you can eat the whole food instead? The whole food is much safer, and far more nutritious than any highly-processed derivative of it. In this case though, eat white rice rather than brown rice. Brown rice contains too much fiber for most of us to handle while we are recovering.
Treese wrote:How About in a PROBIOTIC? I am taking One Probiotic Capsule daily to help my stomach heal, as the Doc recommended I do. I chose Polyflora O. It's for my blood type as per the D'adamo Blood Type Website which says it's best. Is there a better one for this Condition?
As Chemgirl pointed out, most of us do better if we avoid probiotics early on in our recovery. Early on, they either have no noticeable effect, or they make the symptoms much worse (for most of us). Only a small handful of us are able to handle probiotics early in our recovery. After we are in remission, we are much more likely to be able to tolerate a probiotic. But of course by that point, there is a question of whether we actually need any probiotics, since they are not generally helpful early on (when they should be most helpful, according to the people who promote probiotics).

In general, less is more when treating MC. The fewer unknowns we put into our digestive system, the faster it heals, in most cases. After our gut heals, then we are better able to experiment with our diet without disastrous results.

Tex (Wayne)
: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.
TREESE
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Do I Ask my GastroEnterologist???

Post by TREESE »

Wow... you are ALL so Very helpful! Tex, didn't know you were Wayne, sorry. Nice of you to offer a PDF. I have a small laptop I use. I can be reached at [spoiler]pureDzire@optimum.net[/spoiler] if you wanna send me anything. I should have the Book soon...I hope! But every day seems so important Not to remain in the dark if one can help it.

So. to CHEMGIRL, JARI, TEX and ALL who replied... I will read over every Reply several times, so I absorb every bit of your guidance to the best of my ability.

One more Thought...to whom do I go to see about that Stool Test you all spoke of? My GastroEnterologist?

Allright, one More thought... what is the difference with Black Tea???!!! I used to just drink Lipton or Bromleys. And Coffee...I use to use the KEURIG K-Cup Coffees, but I suspected even before all of this, that the French Vanilla Creamer, even though lactose free, made my stomach feel weird. Didn't really use a lot, either. Now, I'm staying away until I gain some weight back. Don't want to take any unnecessary risks.

Thank You all so Very much!
TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
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tex
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Post by tex »

Treese,

I hid your email address in your post so that computer spam bots can't see it. Hopefully that will prevent you from being flooded by spam emails. Actually, any member here who is logged in can open an email-composing window to send you an email, by clicking on the "email" button at the bottom of any of your posts. Those buttons are invisible to the rest of the world who are not logged in, however.

I've sent a PDF. Lemme know if it doesn't work on your laptop and I'll try a different file.

Most MDs don't believe in stool testing for food sensitivities and they are slow to budge from their stogy, obsolete preference for blood tests with inferior sensitivity, so I would be surprised if you can find one who would order the tests you need. Most of us order them direct from the lab, so that we can get on with our recovery (and our life):

https://www.enterolab.com/StaticPages/TestInfo.aspx

Most members choose this combination of tests, but tests can be ordered separately, if desired.

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

Lipton tea is black tea (but they do make a green tea, that's labeled accordingly).

You're most welcome,
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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