Intro and advice for newbie...? :)

cptawesome · Post by **cptawesome** » Tue Jun 09, 2015 5:43 am

Hi all, after three months of lots of watery D I finally had a scope yesterday. We had already suspected MC and although we don't have the biopsy results yet, it appeared MC is probably the correct diagnosis. I was diagnosed with celiac 9 years ago.

Forum looks amazing! Would love and appreciate any and all advice- my dr has mentioned Pepto (3 chewables 3 times a day?), some local steroid which starts with a B, and I've already done one Prednisone burst (as a last resort before having to pay for the scope, haha!). The main things I know I can eat are white rice and chicken. Looks like I have a lot to learn!

Post by **tex** » Tue Jun 09, 2015 8:35 am

Hi, and welcome to the forum,

With your experience from treating celiac disease for over 8 years, you should have the skills and dedication needed to successfully treat MC by diet changes, also. In addition to gluten, the additional foods that may cause us to react include dairy, soy, and eggs. Not everyone reacts to all of those foods, but most of us do. Some of us also have additional food sensitivities.

Our intestines heal much, much faster if we also minimize fiber and sugar in our diet while we are recovering. It's especially important to avoid raw vegetables. Any vegetables and fruit should be peeled (to reduce fiber content) and overcooked (to make them easier to digest). Fruit intake should be minimized in order to reduce sugar intake. We have a problem digesting fructose, and it tends to pass through the small intestine mostly undigested, to the colon where it is fermented by bacteria, resulting in gas, bloating, and diarrhea. After we have been in remission for a while we can usually slowly add more fiber and sugar into our diet, and we will eventually be able to tolerate raw vegetables again.

If symptoms are debilitating, many members here take budesonide to help mask the symptoms while they are recovering, and then they very slowly wean off it after the diet has had time to heal their gut. The Pepto treatment is usually effective at bringing remission, but we have found that more than a few people have significant neurological side effects to taking it at such high doses. One of the risks is tinnitus, for example. It is an effective alternative to the corticosteroid budesonide, however.

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

Tex

cptawesome · Post by **cptawesome** » Tue Jun 09, 2015 9:31 am

Thanks so much, Tex. I have definitely noticed dairy, eggs and corn to be problems. I haven't noticed soy to be so hopefully it's not (because I adore soy sauce on all my white rice, haha!). I'll start keeping better track.

I am so grateful for all these tips!!! I had no idea about sugar! Is there a daily limit which is considered "ok" (like 4 grams or something) or is it something just the less, the better. Do you know, does this extend to artificial sweeteners such as aspartame, sucralose, stevia, etc?

Also good to know about cooked veggies and fruits, will keep that in mind. Sounds like I also need a probiotic. Was on culturelle for a while as they thought I had cdiff after some abx I started in Feb, time to get more!

Finally, is bacon ok?!?!

Gosh, thanks so much! Truly grateful this is here!

Post by **tex** » Tue Jun 09, 2015 11:46 am

cptawesome wrote:I adore soy sauce on all my white rice, haha!). I'll start keeping better track.

I assume you are aware that real soy sauce contains gluten.

We all have our own personal thresholds of tolerance for various items, and if we exceed them, a reaction may be triggered. Usually, small to moderate amounts of sugar are OK, but sugar-rich sources for example, such as most deserts, can be more than we can handle, depending on how much other sugar is in our diet. Serving size definitely matters. While some members here who have tried stevia have reported good results, virtually all other artificial sweeteners typically cause almost all of us to react.

Regarding probiotics, all but a handful of members here (out of a couple thousand) have found that while we are recovering, probiotics either have no noticeable effect, or they cause our symptoms to be much worse. Many members have suffered a relapse of symptoms after they decided to follow someone's advice to try a certain probiotic product too soon in their recovery. When the gut is inflamed, the immune system often perceives probiotic bacteria to be foreign pathogens, and it launches an all-out attack against them, resulting in a flare.

After we have been in remission for a while, probiotics seem to be much better tolerated. IOW, most of those members you see posting about using probiotics have been treating the disease for years. Look at the number of gold stars displayed under their avatar. Every annual anniversary of their registration, the system adds another gold star.

cptawesome wrote:Finally, is bacon ok?!?!

Maybe. Most of us can tolerate it just fine, Some members prefer to buy uncured bacon (without the preservatives).

Tex

Erica P-G · Post by **Erica P-G** » Tue Jun 09, 2015 4:26 pm

Hi,

If you find that you can tolerate Soy here is a wheat free soy sauce http://www.amazon.com/Tamari-Sauce-Whea ... B0046IIXTW, I'm hoping I can use mine again some day...but the verdict is out on that one as I am pretty new with my diet as well.

Cheers
Erica

cptawesome · Post by **cptawesome** » Tue Jun 09, 2015 4:38 pm

Oh sorry I should have specified, I am definitely a good little celiac and use gluten free soy sauce/tamari (eta: my last upper endoscopy showed no gluten damage and I get blood tests every year and they've always been negative. I know it's not 100% but I'm pretty careful!). Sounds like everybody has different thresholds for things so I'll just need to find out what mine are! I'll hold off on the probiotics.

I have found if I take immodium and pepto together it gets me through the day. After I get my official biopsy results I'll probably make a better plan of action! Thanks again for all the tips!

Gabes-Apg · Post by **Gabes-Apg** » Wed Jun 10, 2015 11:58 am

Welcome...
Sorry you got the Dx, and had to find us, but feel assured that answers to most if not all of your questions are here.

Take a few deep breathes, grab a cuppa and do some reading. Read the posts aimed at newbies and subsequent discussions, read the success stories are so you get an idea of what others did and how long it took...
There are a few of us, where gluten is not the main trigger, for me, I react to soy way way worse than gluten. And there are many foods that are high inflammation foods, ie takes more energy for the gut to process them. Sticking with low inflammation, low fibre, easy to digest meals is a good starting point for the gut to heal.

Best wishes for you MC journey.