New to the forum and looking for some help??

[aggie97]

I am 35 years old and have had autoimmune problems since I was 19 - mother had Lupus and of my four siblings, I got the crazy autoimmune gene:
Hypo-thyroiditis, Sjordgrens, trying to rule out MS at the moment and was diagnosed with lymphocytic colitis 2 years ago. My GI, who is the chief-of-staff at a large hospital in Dallas, said he had not seen a case a severe as mine, especially in someone my age.

I have been off and on steroids for years (for some of the above and because my ANA is always very high even when bloodwork shows other problems are under control) and after watching my mother pass away from complications from30+ years of Predinose usage, I decided to not take the proposed treatment.

Over the past two years, the colitis has altered my life and my quality of living; I gave in and started taking 9mg of Entocort 7 weeks ago; not only have my symptoms not gone away, they continue to worsen. This along with the side effects, not sleeping, the 3 weeks bout with mouth ulcers and thrush, and the leg/feet cramps has me very frustrated.
I am in the corporate world and travel frequently; I am afraid for my job if my health continues to decline.

I am desperate to talk to anyone who has had a similar experience or advice.
(Note: I have tried gluten-free, probiotics, dairy-free, & natural remedies)
Amber

[JLH]

Sorry, my answer is in a new thread. Don't know how I did that.....

BTW, some of us have gotten control over our MC without the use of drugs. We are all different though.

[tex]

Hi Amber,

I'm sorry to hear of your autoimmune issues, but actually, your situation is not particularly unusual among the members here. Other autoimmune issues are quite common with MC, and most of us have found that our GI docs, (and rheumatologists, and endocrinologists, etc.), are unable to provide enough help to satisfactorily control our symptoms. That's why we compare notes on this discussion board, and develop our own treatment plans, to get our life back.

I am guessing that when you tried the GF, GF diet, you didn't try it long enough, and you didn't eliminate other likely food sensitivities and gut-irritating foods from your diet, at the same time. Trust me, diet is the key, but that doesn't mean that it's easy to make the diet work. It takes patience and dedication, and a lot of detective work, to ferret out the last food sensitivities, but it is certainly doable, and in reality, it's the only practical way to get your life back, when drugs are ineffective.

The good news is that not only can your MC symptoms be controlled by diet, but in all likelihood, the symptoms of your other autoimmune diseases can be significantly suppressed, or possibly eliminated altogether. Most of us have found that when we resolve our MC symptoms, we also resolve our other autoimmune issues, or at least bring them down to manageable levels.

To begin with, MC causes nutrient malabsorption problems. Since you have been reacting for so many years, be sure that you are taking a good multivitamin that contains the B vitamins, and is free of gluten, dairy, and soy. In addition, you may need a sublingual form of B-12 and folic acid, (they are lozenges that dissolve under the tongue, and go straight into the bloodstream, thus bypassing the malabsorption issue), at least 2,000 to 5,000 IU daily, of vitamin D3, and some form of magnesium supplement. That will help to eliminate your leg/foot cramps, and other neurological issues that might be a problem, but be careful not to take too much oral magnesium, because magnesium is a laxative. I take 250 mg daily, (plus 40 mg worth in a multivitamin), but some members do better with a topical liquid or spray, especially before they are able to achieve remission from the D.

Contrary to what most doctors believe, autoimmune issues are closely associated with food sensitivities, and vitamin D levels.

Not everyone can take Entocort. There is a possibility that it may be making your symptoms worse, but the sleep issues, thrush, etc., may be lingering issues from prednisone, or from prednisone withdrawal. The leg/feet cramps, for example, can be a symptom of corticosteroid withdrawal. However, those symptoms, plus mouth ulcers, are also commonly associated with MC, so they may just be symptoms of active MC, and not due to a corticosteroid.

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

Tex

[sarkin]

Amber,

Welcome. I'm so sorry your symptoms are so debilitating. Many of those AI conditions you mention are strongly associated with food intolerances, and specifically gluten. You've already tried the likeliest suspects - gluten/dairy. Almost none of us here can tolerate either... about half also have trouble with soy (and many other legumes become suspect in that case).

Enterolab testing can help you figure out whether you have antibodies to gluten, dairy, and other foods that cause reactions. A lot of us have a celiac gene, but have never been diagnosed with celiac; many of us have other genes that predispose to gluten sensitivity (I have one of each of those myself). (I'm guessing you've been tested for celiac and it was negative... those blood tests are only reliable when the small intestine is pretty severely damaged, and that is why the average time for a celiac patient to be diagnosed is a shameful 13 years of suffering; the Enterolab tests detect gluten antibodies in stool, which makes sense considering where the problem originates - and are far more sensitive, even for quite some time after gluten is removed from the diet.)

When my symptoms were at their max, I did a short stint with a maximally limited diet. I ate nothing I did not prepare myself, no matter what it said on the label (actually my husband did a huge amount of cooking, and it was an enormous help). My mainstay foods were homemade chicken or turkey broth, bananas, and applesauce. I gradually added some well-cooked vegetables (and the meat from the broth-making). Although I don't know precisely what foods will work for you, I do believe removing every possible suspect food is the best way to let the Entocort do its job. (In addition to what Tex said about giving GF/DF a pretty long trial, many people have hidden sources of those foods sneaking in - and when you're truly in a flareup, as you seem to be, it seems as though just breathing air makes things worse, so it's hard to figure out which foods are the ones to blame.)

My other secret weapon was Pepto Bismol - 8/day, which is a regimen others have used. It's supposed to be for 8 weeks, but I reduced my dose pretty fast as soon as I started to improve. Not everyone can tolerate Pepto, unfortunately - I was lucky. Some people start with 6/day. I still have it in my toolkit, just in case.

I sincerely hope you don't have MS. There is a presentation online about diet and MS that should give you hope (whether or not you have MS, actually): http://video.google.com/videoplay?docid ... 5296745403 . I had the very beginnings of neurological symptoms I was attributing to middle age, or needing a better keyboard... and they are completely gone since I fixed my diet. I think I'm still working on the finer points, and may have another food on my list that I should remove (eggs were my big heartbreak, but now that I'm over that, I'm going to be fine with whatever diet makes me feel great).

Other common problem foods when symptoms are raging are oils (in excess) and fiber. I had a rogue vitamin supplement in my mix at one point - I dropped all supplements for a while to get back on track. A food and symptoms journal can be of enormous help.

Good for you for trying to avoid steroids - and good for you, doing whatever you have to do to get your LC under control. Many here have found Entocort to be of enormous help. And quite a few of us are winning our lives back via diet alone. As fierce and daunting as your symptoms sound, you are also young - as frustrating and debilitating as it is to be fighting this symptoms with the demands of a young active life/job (not that it's fun at any age), that youthful vigor can only be a bonus as you begin to heal.

Please keep us posted, and I wish you speedy progress toward remission,

Sara

[sarkin]

Amber,

P.S. - I meant to mention that at least one member here has had elevated ANA antibodies for some time - those numbers have fallen considerably since she got her diet under control, although her symptoms aren't "perfect" yet. I hope that gives you some additional optimism and encouragement. (In her specific case, she is GF/DF and mostly soy-free - soy being the most common food antigen that provokes a reaction - about half of us.)

--Sara

[Zizzle]

Welcome Amber!
Sara is talking about ME!! What a good memory! I've had highly elevated ANA for 7 years, along with Anti-Actin (Smooth Muscle) Antibody and Rheumatoid Factor. It was first discovered after the birth of my first child (I was 30) when I had a year-long itchy skin rash, sun sensitivity, malar rash, etc, but I tested negative for other Lupus antibodies. My ANA level started at 1:640. 3 years later it was 1:1280 and held there for a few years. But ESR and CRP were always normal. I only had mild IBS during that time and tested negative for celiac back then. 2 years ago the big D of LC hit and I was in the bathroom 6x/day. It's likely I had LC earlier, but the obvious symptoms didn't manifest for some time. I felt like a ticking time-bomb, and my rheumatologist basically treated me like one, ordering no vaccines or immune stimulating supplements...nothing to trigger the eventual autoimmune diseases I'm headed for. I figured this is the perfect time to do something to PREVENT Lupus, RA, Autoimmune Hepatitis (incidentally, sometimes referred to as "celiac hepatitis"), Sjogrens, etc. from ever happening. I've been on a gluten-free, dairy-free and mostly soy-free diet for one year, and my stubborn ANA is now down to 1:320. My LC symptoms are manageable through diet alone, although I still have D, but it's much less frequent and painless. No gas or bloating, no tummy rumbles. If your autoimmunity is tied to gluten-sensitivity, changing your diet could really help. My GI refused to test me for celiac this time around because I was tested 5 years earlier with bloodwork, so I did my own testing through Enterolab.com. That's how I learned which foods I needed to eliminate.

My internist follows me with yearly bloodwork now to check liver and kidney function, ESR, CRP, CBC, antibody levels and vitamin levels. My Vitamin D and B12 continue to be low-normal despite supplementation, so I agree with Tex, there is a link. I haven't seen a rheumy (or even a gastroenterologist) for more substantive work-ups, but I feel good, so I think it can wait for now. I truly believe my diet is the biggest factor contributing to my autoimmune status.

Welcome to our internet family and feel free to ask anything!

[mbeezie]

Hi Amber,

Welcome! You have found the right place for people with difficult cases. I can't add much more to what others have said except to reinforce the need for diet. As Sara mentioned many of us have done the stool test with Enterolab and found it helpful. Others of us discovered that we had a much longer list of sensitivities and did some additional testing called MRT. If GF didn't work at first it was most likely because you have other food issues as well, at least that was my experience. I encourage you to get your vitamin D level checked. You potentially could be severly depeleted and need large doses to turn it around. Deficiency is common with AI disorders.

Changing your diet may sound like a daunting task with a job that requires travel, but many of our members have learned how to travel successfully with diet restrictions. We've had many discussions on this topic. While it's hard to give up eating certain foods at first, getting symptoims under control trumps the taste of any food.

I see you are an Aggie from Texas. I live in Houston. Gig 'em!

Mary Beth

[MaggieRedwings]

Welcome Amber,

I too can not add much to what Tex and Sara and others have said but will reinforce that diet is the key. I, for one, could not take Entocort and it took me a very long time with diet to get the disease under control but now things are 99% there. I agree with the others that gluten and dairy are especially devastating to the disease and also inhibit getting better from AI diseases. Please feel free to ask any questions - someone here will have the answer.

Maggie

[aggie97]

Oh my goodness, I couldn't have imagined such a warm welcome! I really appreciate everyone's kind word, advice and wisdom :)

I am going to start another round of GF, DF and cutout as much fiber as possible; on that regime though, my question would be, what does one eat for breakfast, especially since eggs are a no-go??

I will be going back in to my neuro this week and although not his bailiwick, he can test my D levels and see if their off - thanks for that suggestion!

Happy Wednesday,
Amber

[Gabby]

Hi Amber,

Welcome!!

I like to have Larabars for breakfast.

I also like to have a protein shake made a rice protein powder and almond milk (that I just learned to make thanks to Gloria). My favorite shake is made with chocolate flavored protein powder, almond milk, some banana and some peanut butter.

Take care
Gabby

[sarkin]

Amber,

I hit the wall on "What's for breakfast?", too (I had been relying on eggs).

I enjoy a leftover boiled potato cut in thick slices and spread with almond butter, but my husband almost cried when he saw me eating that while he chowed down on some eggy goodness. If that thought makes you want to burst into tears, too...

We are currently rotating two breakfasts - I'm hoping to dream up more, but this is working great for now.

1) Today is bacon & sweet potato day! We have great duck bacon from a local farmer, and Applegate farm makes a turkey bacon with only safe ingredients. You could be a smart gal and prep the sweet potato the night before - we are not so organized. We chop it up small so it will cook fast, and simmer it with a little water and coconut or olive oil - very little water will do it, it sort of steams itself if you start on medium and go down to low. Or if you had leftover sweet potato... hash browns! Leftover chicken/turkey/steak/burger from the night before can be used the same way. (I am having trouble training myself to buy and cook larger amounts of meat.) We sometimes throw chopped greens in with the sweet potatoes, late in the cooking process so they're steamed but not overcooked.

2) Smoothies: there's a lot of leeway in these, and the main thing is not to add too many things till you're sure you can tolerate them. Bananas are safe for most of us (not quite all) - some people freeze a ripe banana or two. We use other frozen ingredients, so don't need to do that (you could also put in some ice).

*frozen turnip greens (not sure why I fell in love with those - you could use something else, fresh or frozen)
*a banana or two
*frozen or fresh fruit (I've found both high-end organic fro-fru, as we call it, and inexpensive Goya mango or papaya pulp that's great - no added ingredients at all).
*shredded coconut (optional, but actually... it's all optional!)
*Hemp protein powder (only ingredient is hemp - they make a version that dissolves better, so it's not so... powdery)
*a lemon or lime - we slice off the skin and throw it in whole (seeds out as much as we can)
*So Delicious unsweetened coconut milk (also have used my homemade almond milk)

Blend and drink! You could start with a small amount of greens, to keep your fiber down while your system settles down, and gently up them. We are now adding some fish oil - I was avoiding added oils till I felt better, and you might want to do the same.

If you tolerate corn, a GF corn tortilla with almond butter and banana is great - at this time of year, try fresh peaches instead of the banana. I was doing that before I was GF - another one of my tasty breakfasts that my husband thinks is sad ;)

One of our favorite pre-MC breakfasts was smoked salmon with - things I can't eat now. I'm now thinking, that would be great with sliced potato... and something I haven't dreamed up yet, will get back to you! I can imagine it with cucumber, Bibb lettuce, and maybe my homemade nut-cream... and fresh chives...

My husband mentioned tofu scramble - if, of course, you are sure that soy/legumes are good for you. (Soy and me - we're "on a break.") That can be tasty with turnip greens, too.

I actually think my breakfasts are better now than they were back in the Old Days. I feel satisfied longer, and am not ravenous at or before lunch. (Lunch has always been our weak link - we both work from home and are great at dinner, but always seem to forget that lunch is coming... working on that, too.)

I hope you find your magic breakfast potion,

Sara

[tex]

Amber,

Please always be aware that we are all different, and not all of us can tolerate some of the things that others thrive on. For example, I'm not sure if the frozen turnip greens that Sara adds to her smoothies are raw, or not, but many of us would have problems with that, if they were raw. In fact, many of us have problems with any veggies that are not over-cooked.

Lemon or lime is another thing you may have to watch out for. Citrus fruits/juices would practically turn me inside out, back when I was reacting, and many/most of us here have to avoid them, while we're trying to recover. Like Sara, though, at one time, I bought a smoothie-maker, and had a smoothie or two virtually every day, while I was recovering.

In general, though, I agree with Sara's excellent suggestions. It can be tough to figure out breakfasts that are both safe and appetizing. I avoided eggs for a while, when I was recovering , and so I tried things such as Van's frozen GF Waffles, (which are quite tasty and convenient), but I soon stopped eating them, because they contain soy, and I wasn't sure if I was sensitive to soy.

If you don't mind eating livestock feed, (oops, I mean grains ), there are a lot of GF cereals available in health food stores, and Gluten-free Chex, (in several flavors, including Corn, Rice, Honeynut, etc.), can be found in most supermarkets. Envirokids Panda Puffs, Koala Crisp or Rainforest Crunch should also be safe. By now, Post Fruity Pebbles and Cocoa Pebbles should also be GF, (if you don't mind eating over-sweetened cereal). Almond milk, or hempmilk, can be used in place of cow's milk. Rice Dream is probably safe, also, since it contains only very slight traces of gluten, (below 20 ppm, according to the manufacturer).

Like many of us who are avoiding eggs, I often ate leftovers for breakfast, such as pork chops, sausage, steak, etc. A few times I even nuked a few pieces of leftover, deep-fried, catfish for breakfast, (breaded with either corn meal, or a GF flour/meal mix, of course). I suppose that could be interpreted as the southern redneck version of Sara's suggestion of smoked salmon for breakfast. I have to say that I certainly didn't feel deprived, when I did that - it was excellent.

Incidentally, a lot of celiacs are all bent out of shape because back in December, when Post announced that Fruity and Cocoa Pebbles would soon be certified GF, most celiacs assumed that this meant that they would be certified GF by an independent testing agency. In the real world, that's not the way it works, because an independent testing agency can only certify that a particular sample that they have tested, meets certain standards. No matter how often an independent testing agency might sample a product, there is no way that they can legitimately certify that all of the same products produced by that company meet the standard - that's pie-in-the-sky thinking. Testing is based on a sampling process, and to guarantee certification of compliance, all of the cereal in every box of product would have to be tested, and that's impossible, because the testing requires a destructive test. Therefore, the best that any company can legitimately do, is to self-certify. IOW, the company certifies that the product is gluten-free. If the product is out of compliance, then it's the FDA's job to do something about it, (or USDA's job, depending on the product type). Anyone who has a problem with that, simply doesn't understand the testing process. They should start their own company, and see how much luck they have incorporating such demands into their own production process.

Anyway, sorry to get side-tracked - the point I'm trying to make is that, like your overall treatment program, you may have to custom modify any meal suggestions you see here, to fit your own particular situation.

Tex

[Zizzle]

Amber,
I eat a lot of bananas with breakfast, and just bought the NEW Gluten Free Rice Krispies! They are GREAT!! I suspect they will quickly outsell regular rice krispies, since they are made with brown rice instead of white, and people are into the whole grains thing. They were only $2.99 at Hannaford! I eat uncured bacon whenever I can - it has a way of satisfying all cravings. Rice cakes or Udi's bagels with nut butters and jelly or honey are good options too. You might try a latin american breakfast combo of beans and rice, perhaps with a corn tortilla. Carribean style cooks the beans and rice with coconut milk...delish.

[Gloria]

Welcome Amber!!

I can't eat eggs either and struggled for a long time with breakfast. I have eaten the GF cereals with almond or rice milk. When I could eat potatoes, I would have potatoes with either bacon or ham. If you can eat tomatoes, they can be added. Potato pancakes are also great. Since my choices are so limited (I can't eat fruit either), I make my own EF waffles and pancakes. Using GF grains is tricky, however, because they require a combination of several GF flours. If you have a reaction, you won't know which GF flour is the culprit.

Zizzle,

I bought a couple of boxes of GF Rice Krispies a few weeks ago for $2 on sale. I haven't eaten them because they are made with brown rice and I seem to not be able to eat brown rice at the moment. It's nice to read that they taste great. I agree that they will probably outsell other brands.

Gloria

[Zizzle]

Gloria,
Although they are made with brown rice, they are very processed, so i doubt the rice bran portion will affect people the way eating regular brown rice would. I am enjoying them tremendously with coconut and almond milks, as are my kids. They love the snap, crackle, pop noises!