New to the Group

[naomicraver]

First of all I want to say thank you so much for this group. This is my first post but I have been reading all over this site for months and it has helped so much! I was diagnosed in April. I have been suffering with random bouts of diarrhea for years but around this time last year I went through a period of about 4 months where I was having watery diarrhea 7+ times a day. Basically any time I put any kind of food in my mouth I would be running to the bathroom within 15-30 minutes. It started to subside around February. I still have to urgently get to the bathroom 3-5 times a day within 30 minutes of eating meals but not regularly having watery diarrhea. I went through a round of budesonide which didn't really make much of a difference. I also am taking cholestyramine and sometimes dicyclomine but they also make very little difference. I just started magnesium and vitamin d but its too soon to tell. I also tried amitriptyline but it made me way too sleepy. I have other symptoms that are bothersome such as heart palpitations, nausea and gas (mostly after eating dinner), back pain in my mid to lower back, headaches, and extreme fatigue. My worst symptom by far is what I now believe to be BAM. It causes me a lot of pain, itching, swelling, and discomfort. I am a vegetarian and mostly dairy and egg free and the thought of eliminating gluten from my diet makes me very nervous. I am open to any and all advice and again I appreciate this group so much! I have learned way more here that by going to the doctor. Thank you! ~Naomi

[tex]

Hello Naomi,

Welcome to the group. Probably the cruelest, most life-changing problem with this disease is that it causes virtually all of us to be sensitive to gluten. While no one likes to have to change their diet, controlling this disease is especially tough for vegans and vegetarians, because most of us are also sensitive to soy, which also makes us sensitive to most legumes. It takes extra protein to heal the digestive system, so this presents a serious dilemma for vegans and vegetarians, to say the least. The fastest, simplest way to determine whether this dilemma applies to you, is to order stool tests from EnteroLab. Test panels B2 + C2 are specifically designed to determine the primary food sensitivities of vegans and vegetarians. These test results will eliminate all the guesswork, and show you immediately which foods are causing you to react without going through the trial and error involved with an elimination diet, and will allow you to get to remission relatively quickly. For your convenience, here's a direct link to the descriptions of those tests:

https://www.enterolab.com/StaticPages/T ... #PanelB2C2

To control this disease, we have to totally avoid all traces of the foods that cause our immune system to produce antibodies against them. Minimizing such foods, or mostly avoiding them, will almost never bring remission, and allow our digestive system to heal, so that we can return to normal health. And the problem with allowing the inflammation that causes this disease to continue, even if we can tolerate the symptoms, is that the long-term effects of the inflammation significantly increases the risk of developing other autoimmune diseases.

That said, I'm not sure how you view shellfish as a protein source. Unless we're allergic to shellfish before we develop MC, the vast majority of us can tolerate most types of shellfish, such as shrimp, prawns, clams, oysters, mussels, scallops, etc.

I hope this helps, and please feel free to ask anything.

Tex

[naomicraver]

Thank you so much for the help and advice! I was wondering...is enterolab testing something the Dr. orders? Or is it something that I need to do on my own? ~Naomi

[Gabes-Apg]

welcome to the group and sympathies for your diagnosis and that you had to find us

I have other symptoms that are bothersome such as heart palpitations, nausea and gas (mostly after eating dinner), back pain in my mid to lower back, headaches, and extreme fatigue. My worst symptom by far is what I now believe to be BAM. It causes me a lot of pain, itching, swelling, and discomfort. I am a vegetarian and mostly dairy and egg free and the thought of eliminating gluten from my diet makes me very nervous.

the pains, headaches, fatigue are all common symptoms when you are having a major trigger.
The pain, itching and swelling is also histamine issues and linked to a major trigger.

Why are you nervous about eliminating gluten from your diet?

sadly in MC world you can't be 'mostly something free'. in the early stages of healing, avoiding major triggers 100% is vital if you want to alleviate debilitating symptoms and 'get your life back'

If you have been reading over the site for months, you will see that making diet and lifestyle changes are strongly encouraged for long term wellness.
Have a look at the posts in the 'Guidelines to recovery section' and the subsequent discussions

another good area to read is the member success stories area - here you will see others that were hesitant about diet and lifestyle changes at first that in time realise the value of making the change.
hope this helps

[naomicraver]

Thank you so much for your reply! I appreciate it so much! My concern with gluten is if I’m a vegetarian who mostly doesn’t eat dairy of eggs and I eliminate gluten and soy then what do I eat? I’m sure everyone feels that way at first. I often feel that I don’t have a healthy relationship with food…maybe that’s where the nervousness stems from. Thank you for being there and listening. It’s taken me a long time to open up about any of this to anyone. —Naomi

[Rosie]

Eliminating gluten isn't too bad, as there are now lots of tasty gluten-free substitutes for bread, pasta and other baked goods. You can experiment around the various brands and find the substitutes that work best for you. Larger towns even have gluten free bakeries that make all sorts of items. My husband doesn't have to be gluten free, but in support of my journey he agreed to make our house gluten free. He has gotten used to the alternative items and they taste just fine to him. I found that after a month or so, I got used to the change and didn't mind at all.

Elimination of soy and the related legumes is much more of a challenge for vegetarians, especially if you don't eat eggs or dairy. Getting enough protein is an important part of healing from MC as well as general health. I would encourage you to get the Enterolab testing to see if you are sensitive to soy.

MC is a lifelong journey, but making the effort to eliminate the foods we are sensitive to is well worth it.

Take care,
Rosie

[naomicraver]

Thank you so much for your response! I appreciate all of the help! ~Naomi

[tex]

is enterolab testing something the Dr. orders? Or is it something that I need to do on my own?

My apologies — I overlooked this question. A few doctors will order the tests for a patient, especially some naturopaths, but most MDs will not order the tests because of a policy adopted many years ago. Traditionally, the medical community has essentially boycotted the EnteroLab tests, because they resent the online lab cutting them out of the loop, by offering the tests directly to patients, and even after a couple of decades, they haven't managed to get over their grudge. In fact, doctors in the states of New York and Maryland even persuaded their state legislatures to pass laws forbidding patients from ordering tests directly. But residents of those states can get around those laws, by having a friend or relative in some other state order the tests for them.

Consequently, most of us just order the tests ourselves, because it's easy to do, either online, or with a phone call. Some insurance companies will cover the cost of the tests, even when ordered by the patient, rather than a doctor. if you want to see if your insurance company will cover the tests, you can call or email the lab, and they can tell you the insurance codes for the tests you want to order, and then you can call your insurance company to see if they will cover all or part of the costs of the tests.

I hope this helps,

Tex