New to the board, and struggling

[Yoga girl]

Hi everyone,
I am new to the board, but have been dealing with MC for nearly 6 years. I am currently on budesonide (for nearly 3 years), and would like to get off but my symptoms have been getting worse. (On 9 mg).

I have been diagnosed with anemia, fat malabsorption, LC (2009) and then CC (2013).
I have the HLA DQ gene for celiac, but my endoscopy was fine. I also have a high positive ANA (greater than 1:2560). And have tested positive for scleroderma (SCL70).

I have tried numerous diets, without much success. I know I have to eliminate gluten (been doing that sine November, but had mis-steps last month). How long do I need to be on a diet to see improvement?

This is making me very sad, as I never know what is safe to eat. I am now also eliminating soy, corn, potatoes, all grains except rice, and dairy. I started this back in November (except soy), and am now going to exclude it all.

I have also met with a nutritionalist, who recommends glutamine. I just started re-taking this (tried in November 2013, but it made my symptoms worse).

Is there any advice anyone can provide? I have read about the enterolab testing, but am a little leary. At this point though, I'm willing to try anything.

Thanks in advance for the advice!

[tex]

Is there any advice anyone can provide? I have read about the enterolab testing, but am a little leary. At this point though, I'm willing to try anything.

Hi,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease (including all but a handful of GI docs in the world) unless they actually have it.

Are you a GI doc? I'm sure that you're not — I'm just being facetious. But the reason I ask that silly question is because except for a few enlightened doctors, who are open-minded enough to actually think for themselves, GI specialists are the most likely of anyone on this planet, to be leary of the one lab in the world that offers tests that are the most likely to help us to get our life back. And of course, most GI docs insist that diet has nothing to do with MC, so that's the main reason why they tend to dispute the validity of those tests.

Trust me, this topic has come up on this board many times before, so rather than to try to reinvent the wheel here, please read the posts in the thread at the following link. Hopefully the discussions in that thread will reassure you that ordering those tests is the surest way to get started on a solid path to get your life back.

having major acceptance issues (blame the doc)

If you would like to get off the medications and stop your symptoms by preventing the inflammation from being generated in the first place, the EnteroLab tests will be a great help in doing that. But you can do it without the tests of course, if you are dedicated, and you are willing and able to properly utilize an elimination diet to determine all of your food sensitivities. Unfortunately, eliminating some of your food sensitivities will not provide relief. Controlling MC is much tougher than that — we have to eliminate all of our significant food sensitivities in order to completely control the disease, and get our life back.

And if you're like most of us here, as you begin to gain control of your digestive problems by fine-tuning your diet, and your gut starts to heal, you will almost surely be pleasantly surprised to discover that the inflammation in your intestines has been driving your other health issues as well, and those symptoms will probably begin to diminish, also.

Again welcome aboard. We've been there, done that, and we totally understand what you're dealing with. We're here to try to help in any way we can, so please feel free to ask anything.

Tex

[Heady]

So sorry you are having grief. I found this site April 1st. I highly recommend you order the book in the upper right hand corner of this site. It is a fabulous reference and great explanation of our MC bodies, treatments etc. The many experienced folks here and their recommendations have given me my life back. I have been D free for 4wks now & am fortunate to be on no meds! I only take vit.D , as many of us are unable to tolerate supplements during our flares. The old saying "Less is better" applies to us MCers. I can't stress enough how important it is to stick close to your elimination diet while your gut heals. It may take many months for your gut to heal but it is life changing! Keep in mind that everyone has their own individual MC journey. We all have food intolerances, some more than others. The diet may seem overwhelming at first but you just need to keep your diet basic one ingredient foods. As you progress with your diet you will become more creative cooking with the foods that your gut can tolerate. I can eat Meat,fish,well cooked veg like carrots,green Beans,squash,sweet potato,red potatoes,zucchini. I also tolerate almond milk,almond butter,rice,rice chex cereal,rice cakes, home made soup. Nothing raw or processed. nothing with skins,seeds,spice,fruit,sugar, artificial sweetener,nuts. Basic is best!!! Exactly what foods are you eating/drinking? There are many great minds here to brainstorm with to find a path to recovery! Everyone here has walked the MC path. Take one day at a time. Best wishes on your MC Journey. Keep in touch.

[nerdhume]

Welcome to the board yoga girl.
You have received excellent advice from Tex and Heady. Just wanted to add my 2 cents worth.
I had the enterolab test and found I had to go DF, SF, EF & GF. I am so glad I had the tests and got Tex's book. It saved me months of trying to figure out multiple sensitivities. Before I thought everything made me sick, after the test I realized everything I was eating had either gluten, soy, eggs or dairy.
It seems impossible at first, but with perseverance and great advice from this group you can get your life back.

[Yoga girl]

Hi again, and thank you for your feedback! I am going to go ahead with the testing, and am curious which test panels are recommended? I'm thinking the A1 and C1 panels. I already know that I have the gene for Celiac, fat malabsorption, and that I need to avoid gluten from here on out (due to my other auto-immune issues).

I am really curious if soy, corn, potatoes, eggs, and some fruits are a being a culprit to my diet. Would A1 & C1 tests give me those results?

I have been eating a lot of whole foods (lean meats and fish included), and paleo baking. I love the cookbook by Danielle Walker -- a lot of great recipes in there!

incidentally, my nutritionalist stated that she has helped 3 people with MC thru the elimination of gluten.

Thanks again for your advice! I'm looking forward to getting to know all of you :)

[tex]

Those 2 test panels are the ones selected by most members here, and for most of us they provide the most useful information for the money.

Kudos to your nutritionist!

You're very welcome, and please keep us informed on your progress.

Tex

[Leah]

Welcome yoga girl. That's a good plan you have right now.
Eat simple, non-processed foods. RAW fruits ( and veggies) are too hard on the system right now. The fructose and fiber will most likely cause D. But know that down the road, when your gut heals, you may be able to add some back in. I have been slowly able to add many foods back in since I started my journey over 2 years ago. I can even eat a salad now… and beans! Right now, you just need to concentrate on eliminating what you are reacting to and healing your intestines. Sometimes it's good to know that some of the foods we have to "give up" may not be forever. I remain g,d,s free, but I even think I can handle a bit of dairy now! So buckle down now and you may be rewarded down the road. You CAN get your life back. You can do this!

Good luck and keep us posted
leah

[brookevale]

Yoga Girl,

Wow you sound like my twin with some of your struggles and symptoms. I have severe fat malabsorption (I've lost 25 lbs in five months and still losing). I wasn't diagnosed with MC but my GI doc suspects it and prescribed me Entocort. I've been on 6 mg a day for about a month and it's the only thing that's controlled the diarrhea. In the meantime, I have been terrible with sticking to a healing diet. I would do ok for a few days then throw my hands up and eat crap again as I expected instant relief and have little restraint when everyone else in the house can eat whatever they want but me. Well, over the past few weeks, the pain and suffering and weight loss became significant enough for me to finally commit no matter what. I am doing meat and well cooked veggies (low fiber/low residue) for now. My biggest trigger is casein protein, so dairy is off limits. Also, anything high in fiber or "scratchy" like nuts or even nut butters damaged my intestines even more. High FODMAP foods like broccoli and cauliflower and beans are the worst as well. I get depressed too that I'm never going to be able to eat normally. But, I know it will at least get better if I stick to a restricted diet for a time. I try to keep it in the here and now and not project. I bring meals with me to events and others' houses. I started buying the new Beech Nut organic veggie mixes to heat up on top of fish and meat. They are so much easier on my digestive system. I have to watch oils of any kind as they make me lose weight or halt any weight gain. I also have strange yet severe female symptoms that coincide with eating. I am pretty sure I suffer from systemic yeast and SIBO (small intestinal bacterial overgrowth) on top of the MC as I've been a sugar and carb addict for years and all this started right after several rounds of antibiotics and NSAIDs. This is definitely adventure I did not sign up for but have to make the most of.

I wanted to try the Glutamine again too but am scared. I can't do MSG and isn't glutamate glutamine anyhow?

Hang in there. Keep us posted.
Brooke

[Heady]

I found an article about the differences but am unable to post link here. If you google difference between glutamate and glutamine it will direct you to a site by DogtorJ.com he explains it well.

[tex]

I'm guessing this the article you were referring to.

Gluten vs. Glutamate (glutamic acid) vs. Glutamine

Thanks. That's a good article.

Tex

[jgivens]

Yoga Girl--
I do not have anything to add. Wonderful folks giving wonderful information from their experiences. I am wondering WHERE in Michigan you live? There are three of us on the board who are from Kalamazoo. It would be interesting to know where you have found your gastroenterologist and your nutritionist.

[brandy]

Yoga girl,

I found easy, meditative yoga to be helpful in addition to diet changes. Yoga Nidra and Amrit yoga have been most helpful. Brandy
They are mostly meditation with a little bit of yoga.

[brookevale]

Very interesting article about the difference between glutamate and glutamine. So, it's my understanding that if we have a diet low in glutamates, which "typical" MC diet is, then glutamine supplements would be beneficial. I may try the glutamine again and give it a whirl.

Thanks and keep hanging in there Yoga Girl. Eating "right" will be worth it in the end. It is so hard but you can do it!

Brooke

[brandy]

Heady and Tex,

Very interesting article. brandy