Recently Diagnosed with MC

[BusyMom]

Hello,
Hopefully I am posting this the right way. I am a 40 year old female in Denver, CO. Just turned 40 and actually spent my birthday in the hospital. I have been diagnosed for the last 10 years with IBS, but a recent attack of D for the last 2 months had my doctor refer me to a GI specialist. Had a colonoscopy/endoscopy done last week that looked perfect, except for a mildly red/inflamed stomach. I then ended up in the hospital last Sunday from abdominal pain that was beyond anything I could tolerate. It was in the hospital that my biopsy results came back that I had CC. I was told the pain that put me in the hospital was spasms in my intestines, that came from the long periods of D I've had. I got a prescription for Bentyl that I am to take if I have that type of pain again. (This is the 3rd time in about 5 yrs I ended up in hospital with those spasms.)

So I am brand new to understanding what I have and how to best move forward. My GI doctor prescribed Entocort (3 pills/3 MG) every morning and Pepto twice a day (I am about 3 days into this). I'm supposed to go back in 4 weeks to begin the process of weening off the Entocort at that time. As far as diet, was told by doctor to do low fat, low fiber, low lactose diet, and do not take any kind of supplements, powders, etc, that is not pure "food". I tested negative for celiac disease through a blood test and my doctor said I'm fine to continue eating gluten. I've been following these orders, although I have bought many gluten-free products and my gluten intake right now is minimal.

Other than the above, I have read many of your posts to try and understand if anything else, what I should be doing.

I'm one that has spent years living on salads, fruit and protein (chicken, ground turkey, fish) and I'm having a very difficult time adjusting to a diet of rice and potato (they are very unappealing to me). The last couple months I've stayed far away from most veggies and fruits; I'm almost scared to try them, especially hearing raw is no bueno. But I'm missing them terribly.

My D has improved; I suspect due to the Pepto, but I still have lots and lots of gas and suspecting that is what's causing the constant, dull, abdominal pain. Regardless of what I eat (could be chicken/potatoes), I have immediate gurgling and dull pain. So not sure what else I can do to help with this. Surprisingly, last night, at the advise of my Mom, I bought baby food veggies (peas, green beans and asparagus) and it was almost soothing. Is that something that folks have tried and has helped? What fruits and veggies are low triggering foods, because I'm going crazy not eating any (I'm eating bananas and applesauce, but that's about it).

I am thinking of ordering the Enterolab because I fear I get too impatient to handle the time it takes to test the various food triggers one by one. Although I have only known about my CC for less than a week, I've had the D for 2 months and have tried BRAT diet, low fodmaps, etc, and I can't seem to pinpoint anything that helps or hurts.

I'm glad to see this support forum; I feel I'd be much further from understanding any of this without you.

[Leah]

Welcome busy Mom. Your "IBS" was probably the start of your MC, but that is neither here nor there. This is a complicated disease and is triggered by many different things. Sometimes it's triggered by the drugs that doctors give us! Stress, NSAID use, Antibiotic use, antidepressant use…etc. What we do know is that many doctors are way off base with the food connection.

I don't know much about Bentyl, but I have been on Entocort. Most of us don't do Entocort AND Pepto at the same time. How do you know which is helping? What's important to know is that Entocort will help with symptoms, but will not cure you. The diet is what heals, not the drug. Plus, if you stop too soon, you could relapse quickly. It's also important to know that if you start to get constipated, THAT is the time to wean to a lower dose. It took me 6 months to slowly wean off of it ( and that was on pretty strict elimination diet)

The Enterolab tests are a fast way to figure out what your main triggers are. If not, it's best to take the "big four" ( gluten, dairy,soy, eggs) completely out while you are trying to heal. They can be tested back in later. ANd you are right, fresh fruits and veggies are too rough on an inflamed gut. For now, only eat very cooked ones. That's probably why the babyhood felt good. Even after over two years, I still can't handle much fresh fruit, but I can now eat raw vegetables and salad…. so there is hope!

The blood test for Celiac doesn't do most of us much good because we have "non-celiac gluten sensitivity". There is no such thing as going "mostly gluten free" if you are producing inflammatory IgA antibodies to it. You must go 100% GF to feel better. IgA antibodies is what the Enterolab test look for.

Some of us can eat rice and corn, ( I can ) others have discovered that they do best with no grains. Some can eat nuts, others can't. Some of us even react to certain meat proteins while many of us can eat then all. The best thing to do is eat all fresh foods that you cook yourself. ALl the GF processed food should be saved for when you have some healing under your belt. They have a lot of ingredients that may not sit well right now.

Believe me, I know how you feel about salads and such. I was also one who ate that way ( I'm a certified personal trainer/nutrition specialist). I really had to switch my way of thinking. This whole process can be overwhelming at first, but it does get easier. And down the road, you may be able to test many foods back into your diet. I can even eat beans and spicy foods now!

We are all here to help you. Ask anything and keep us posted.

Leah

PS, you might want to buy Tex's book on MC. Just click on the picture of it in the upper right hand corner of this page

[tex]

HI,

EDIT: I've got a slow connection today. I notice that Leah posted while I was still trying to get this post entered, so some of this may be redundant.

Welcome to our internet family. You seem to be pretty much on the right track, except for the advice from your GI doc to continue to eat gluten. The celiac blood tests that the doctors use are not capable of detecting the type of gluten sensitivity that we have with MC. IOW, those tests are capable of detecting fully-developed celiac disease, but they definitely are not capable of detecting non-celiac gluten sensitivity, nor are they even capable of detecting earlier stages of celiac disease, before extensive damage to the villi of the small intestine has accrued. That's why the average time from the first onset of symptoms until an "official" diagnosis of celiac disease is handed down is still 9.7 years in this country, according to the latest published statistics.

The EnteroLab test can accurately and reliably detect gluten sensitivity as soon as it develops, so that's why we rely on their tests for modifying our diet. And since we are at least as sensitive to gluten as the average celiac, we have to avoid all sources of gluten, including the trace amounts found in many processed foods, pharmaceuticals, and supplements.

Your doctor's advice to minimize fiber is sound, but most of us are not just sensitive to lactose — the biggest problem with all dairy products is that we produce antibodies to casein, the primary protein in milk. Most of us also have other food sensitivities, soy being the next most common problem, and this typically includes a sensitivity to most legumes, also.

If you're wondering how you could suddenly become sensitive to all these foods, research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and this opens the door to other food sensitivities, because certain proteins in certain other foods contain peptides that are very similar to the peptides in gluten that cause us to react.

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

Tex

P. S. One of the top GI docs in the nation (as far as food sensitivities, and treating MC and celiac disease are concerned) is located in Colorado Springs, and he only accepts residents of Colorado as patients. In case you might be interested now, or in the future, here's his contact information:

Dr. Scot Lewey (The Food Doc)
Gastroenterology Associates of Colorado Springs
Colorado Springs, Co
(719) 387-2127
Note: Dr. Lewey will only accept residents of the state of Colorado as patients

http://www.peakgastro.com/staff/scot-lewey-do/

http://www.thefooddoc.com/index.html

[BusyMom]

Thank you both Leah and Tex for your replies. I am SO grateful for the help that is available on this support site.

I think I am going to request the Enterolab testing, as I'm very anxious to know what my food sensititivities are and at the very least, do as you suggested with getting tested for the main triggers.

Leah, being a personal trainer, you probably can relate a lot to my situation. In the last couple years, I've been very active, something I had put aside the last 10 years with having kids. Last summer I did a lot of races, triathlon, etc, and was so excited for this summer. So the onset of this happening right before summer has me depressed beyond belief (I'm already signed up for so much this summer). I am guessing stress was the onset, as I lost my father in Feb, and also found out I'm losing my job this May. I don't take Advil, Aleve, etc, hardly ever. And there are many nights in the last couple months, I've cried to my husband that I can't keep going on like this. I look forward to that moment in the day where I feel really good and run to the gym just to get a workout in before I eat and feel yucky again.

With that said, I have a dietary supplement that my doctor told me to stop taking. I am in LOVE with it! It's from the company Xango, called Favao. It's supposed to be an all natural energy supplement. Ingredients are: Panax Ginseng Extract (root), Green Tea Extract (leaves), Taurine, Mangosteen Fruit Powder, Apple Extract, Gotu Kola (leaves), Organic cane juice powder, coconut water, citric acid, natural flavors, stevia leaf extract and silicon dioxide. I am in the process now of finding out if there is gluten in it, and will 100% stop taking it if I find out there is. But simply in your opinion, would you stop taking this? My doctor got a little mad at me when I asked if this is the one thing I can keep taking. So I'm devastated to hear that I need to stop taking it. Would love both of your opinions (although I'm very frightened you are going to tell me to listen to dr).

Tex, thank you so much for that Dr referral. I am looking him up as we speak.

[tex]

It seems that in general, the longer the ingredient list of a product, the less likely that we will be able to tolerate it. For most of us, the fewer supplements we take, and the simpler we keep our diet (while we are healing), the faster we recover. There are certain exceptions (because many of us tend to be low on vitamins D and B-12, and on magnesium), but taking most other supplements is usually better done after we are in a condition of stable remission, and after our gut has had some time to heal. We're all different in how we respond to various products, and that includes medications and supplements, so it's impossible to accurately guess whether a food or a manufactured product will be well-tolerated by someone, just because others can tolerate it.

But Leah is probably in a better position to judge that product than I am, because I've never used anything even similar.

Tex

[MBombardier]

Welcome, BusyMom, you are in the right place. I can totally identify with wanting to know everything right now so that whatever has to be done can be put into place, healing accomplished, and life lived again. You CAN get your life back, but it may take a little while.

Most of us don't eat anything with more than three ingredients. You just never know how the ingredients may interact with your gut, even when each of them may be just fine. I take quite a few supplements, but they are specifically geared to what i am probably lacking due to malabsorption, like calcium, magnesium, potassium, Vitamin D, the B vitamins, etc.

My suggestion is that you stop taking this supplement for a couple of weeks, then add it back. If you don't have a reaction, you are good to go with it. But if you do, something to be aware of is that sometimes the thing we think can't be the problem because we've been eating/taking it forever, is the missing key.

[tex]

My suggestion is that you stop taking this supplement for a couple of weeks, then add it back. If you don't have a reaction, you are good to go with it. But if you do, something to be aware of is that sometimes the thing we think can't be the problem because we've been eating/taking it forever, is the missing key.

That's great advice, and excellent insight.

Tex

[Leah]

I sooo understand you as an athlete. Your supplement sounds OK, but like Marliss said, we are all different with what we can and can not tolerate. I drink a "green drink" that has many ingredients ( but they are mostly powdered greens and veggies) and the only thing i changed all the way through my healing time is switch to an organic,gluten free brand. Maybe I should have stopped taking it for the first 6 months, but decided that the good of it might outweigh the bad ( because I was losing so many nutrients with the D at first and needed to keep working in the gym). I told myself that if I didn't progressively feel better with the strict elimination diet , then I would drop the drink and see if I got better. Well, luckily I didn't have to do that. I can't make that decision for you. How we each decide to tackle this diet thing is a personal one. However, more then two years later, I am doing very well drinking my green drink and working out as I was before. However, I remain gluten, dairy, and soy free.

If you do what needs to be done now, you most likely will be able to heal enough to be back to your workouts. Be patient. It takes time. There is a light at the end of the tunnel :)

Leah

Oh, and don't be surprised if your doctor won't order the Enterolab test and you have to do it yourself and pay out of pocket

[BusyMom]

Thank you all.

I already called insurance and found out they would not pay for the Enterolab and I'm willing to do it, even out of pocket.

Tex, I got in touch with the office of Dr Scot Lewey. I think he may have moved practices, here is his current info:

Peak Gastroenterology Associates in Colorado Springs
2222 N Nevada Ave
Colorado Springs, CO 80907
(719) 636-1201 (Office)

The great news is that they now have a Castle Rock office, which is a 15 min drive for me. The bad news is that he's booked up till late June!!! I guess I'll keep working on this (with the awesome help of you guys) until I can get in to see him.

One more question I do have. I heard people talking about lacking in vitamin D; how do you know if you have a deficiency? Also, since a low fiber diet is suggested, does that mean your body should not have it otherwise? I'm confused as I thought fiber is something your body needs? I apparently have a lot to learn!

[tex]

Oops!

Yes, I discovered that he had moved, and I finally located him and updated the links that I had for him, but I forgot about the contact information. Thanks for pointing that out, and providing the new contact info so that I can update his listing.

Your PCP (or any doc) can order a blood test to check your vitamin D level. Be sure that she or he orders the 25(OH)D test {not the 1,25(OH)D test}, because if your doctor mistakenly orders the 1,25(OH)D test, and your test result is high, your doctor will assume that your vitamin D level is fine, when actually a high 1,25(OH)D result typically means that vitamin D is deficient. It takes some background information to understand why this is so, but you can find an explanation in the thread at the link below, if you are interested. This is a very long thread (4 pages long), but it contains a huge amount of useful information for anyone who has an autoimmune disease (such as MC). Incidentally, the 25(OH)D test is also referred to as the 25 Hydroxy D test.

Paging Tex - re mast cells

Or, you can order a vitamin D test yourself from this site:

https://vitamindcouncil.zrtlab.com/

Several of us here use those test kits, because our doctor either forgets, or isn't willing, to order a vitamin D test for us. Many doctors don't seem to understand the connection between IBDs and vitamin D deficiency. The test kit requires pricking the end of a finger to get a few drops of blood on a sample collection pad, and the sample is allowed to dry and then sent to the lab. The test is rated very highly, and I have a hunch it may be better than the one used by my doctor. It's certainly no worse.

Most of us also used to think that fiber was an essential part of our diet, but some of us have changed our minds after studying some recent research. You might be interested in this blog written by Dr. Michael Eades (a close friend of paleo diet expert Dr. Loren Cordain):

A cautionary tale of mucus fore and aft

It's also interesting to note that whenever someone ends up with an ileostomy, following abdominal surgery, the main point of the dietary recommendations is to avoid fiber as much as possible. As someone who has an ileostomy, I can assure you from my own experience that fiber is definitely not an essential part of the human diet, as so many "experts" claim.

Tex

[nerdhume]

I would absolutely recommend the Enterolab test. Just got my results a couple of days ago and it has saved me from months of trying to figure out my triggers (at least for the big 4).

[DebE13]

It seems almost comical that your GI would be so insistent about the supplement but give you the thumbs up on gluten. I would go with the suggestion of giving it up on the short term then it won't feel so final. If you find you feel better without it, it won't be such a hard choice to give it up. I did that with coffee. It was a real bugger without it because I enjoy it so much but I found absolutely no change so I was able to add it back in.

Did you ask your insurance if it would be covered with an order from your doctor? My insurance covered my enterolab tests with a script from my GI. I was not successful in talking him to expanding it to include all the testing, I had to pay for some out of pocket, but my insurance picked up most of it. Enterolab was wonderful to work with and went out of their way to coordinate with my GI to get the orders. I had to submit the paperwork to my insurance myself but that was no big deal. Enterolab gives you a detailed, coded statement that meets all the insurance requirements to process. On a side note, my GI never even once commented on the results when they came back. It was disappointing but I wasn't looking for his thoughts on the subject because I knew I would get good direction on what I didn't understand here.

I've been on entocort since 2012. I am at a very low dose now but the slow tapering is a must. Slooooow tapering probably slower than what your GI will recommend. I've tried the Pepto and never did much for me but surprise me with tar black D. Although, it does work for some. Good luck!

[Leah]

No, we don't "need" fiber. And if we were to choose a type to add back in, soluble is the way to go ( apposed to insoluble)
Leah

[BusyMom]

The one thing about pepto I didn't mention, was she just wanted me on it for only a week. I will be off that in a couple more days and only taking 2 tablets at this point instead of the 4 I started with.

The way my insurance explained to me, is that Enterolab is Out of Network to my plan, which means I can run it through insurance (which I will) but it will go all towards my (very high) out of network deductible, basically causing me to pay for it regardless. The only way insurance would have paid is if I had met that deductible already, and I haven't. I went ahead and ordered the main 4 panel (gluten, milk, soy, eggs).

Good to know on the fiber; and thanks for the reading materials.

I still haven't gotten an answer on if there is gluten in my supplement. I decided to stay on it for the moment (I actually had one very good day with my stomach yesterday and did take it before working out), but if the panel comes back that I'm gluten intolerant AND it's in the supplement, I will obviously give it up. ~ Leah, I may need some suggestions on alternatives if so.
If there is no gluten in the supplement, I will keep it in my diet for a little while and see if my stomach improves without giving it up yet. I have some races coming up in 2 weeks and really want to be ready for them; of course, I'm running the risk of not being able to race at all. Fingers crossed. Thanks so much for your thoughts on the matter. I really appreciate it.
Michele

[Leah]

Michele, I will keep my fingers crossed for you when it comes to your drink. The two things I see that could cause issues is the amount of sugars… and green tea which has caffeine. We will see :)

Keep us posted on your progress!
Leah