I'm back again . . . sadly

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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Beth
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I'm back again . . . sadly

Post by Beth »

Hi everyone,

A few years ago I was diagnosed with LC, and after seeing an idiot doctor who told me my treatment was either pepto or steroids, I went straight home and found Sally's original website. I was really sick at the time, and when you all recommended that I try a GF diet, I was amazed to find that I was completely better in 3 days. I stayed relatively GF for awhile, and then slowly I started adding in a bit of wheat here and there. I got it so that I could eat Cheerios with no problem and could have about two slices of bread/day. My body always let me know when I'd gone too far, and I'd get back on GF until I felt better.

Well, for the past three weeks, I've been pretty sick again. Only this time, my GF diet, which I have been very strict about during these three weeks, isn't working. I was reading through a whole bunch of your posts, and I'm overwhelmed at the amount of information. I'm also overwhelmed at the idea of starting a paleo diet. That sounds like pure hell to me since I'm primarily a vegetarian (just don't like meat) and most of my calories come from rice and potatoes. What in god's name would I eat? But, for now, I know that's secondary to figuring out what I need to do first. Can you all give me some tips on what I need to ask my doctor about? Are there certain tests I need to request? (I recently had some blood tests done just to give myself a baseline before my DH and I try to conceive this coming summer. My thyroid levels came back low, which suggests hypothyroidism. My PCP wants to retest in a month). Anyway, is there anything I should be eliminating from my diet immediately, such as dairy or soy? I'm at a loss to know how to help my body or where to start. Any recommendations you have I would really appreciate.

Thanks so much,
Beth
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Post by tex »

Hi Beth,

I'm glad you found us. Sorry to hear that you're not having any luck stopping the current reaction.

One reason why many/most of us eat meat, is because of the fact that in addition to gluten, we are also intolerant of casein, (the primary protein in dairy products), and some of us are intolerant to soy, and that makes it difficult to ingest enough protein, unless we eat some meat. I would suggest that you try cutting all dairy out of your diet, since a high percentage of us react to it, and see if that brings some improvement in a week or so.

Soy would probably be the next item to try eliminating, and after that corn. Note that when/if we are actively reacting, many of us are intolerant to many foods that we can normally tolerate, when our gut is fully healed. For example, before my gut healed, I couldn't eat any corn, or corn derivatives, fruit, and many vegetables, especially leafy vegetables such as lettuce. After being strictly GF for over 4 years, I can now eat corn, fruits, and vegetables with no problems.

Frankly, unless you have a very exceptional doctor, I doubt that he or she will acknowledge that you can control the symptoms of LC by diet alone. If you want lab verification of certain food intolerances, the best choice would be a stool test with Enterolab, in Dallas. However, you can usually determine which foods you might be intolerant of simply by cutting them from your diet for a while, and if the improvement doesn't offer convincing evidence, you can reintroduce them again, and see how you react. Jean has some very good guidelines on food intolerance testing procedures in the Information On Diet forum.

Most of the members have probably already retired for the night, but with all the cumulative experience here, surely we can help you get back on track, and resolve your issues.

Welcome to our internet family,

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by kate_ce1995 »

Hi Beth,

Sounds like you need a short period of time at least free of most known allergans like Tex said. Maybe try the BRAT diet for a week and see if that settles your stomach/guts. I think one of our members used to add plain, unseasoned grilled chicken to the BRAT diet to make it a little more palatable, but then if you don't like meat, that won't help.

Have you considered Dr. Fine's tests for food sensitivities? Someone correct me if I'm wrong, but he now can test for gluten, dairy (caisin), soy, eggs, yeast. All common food sensitivities.

Katy
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Post by starfire »

:welcome: Beth,

Really glad you found our site but, of course, sorry for the reason.

I am not really "on" the diet right now (have been maintaining on Asacol after prednisone and entocort) I'd go back on entocort if I had to but hope I'm never on pred again.

Even though I am maintaining on Asacol, I do try to stay away from gluten although I'm not as strict as a person maintaining only on the diet would have to be. I do believe that, on the whole, I would feel better if I were on the Paleo Diet. I am following a fair amount of that diet also. Why not go all the way???.......Call me an idiot, I suppose.

Anyway, I know there is tons of support and knowledge available here if you choose to use it.

Good Luck and I hope to see more posts................... :grin:

Shirley
When the eagles are silent, the parrots begin to jabber"
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Beth
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Post by Beth »

Thanks for your initial advice, Katy and Tex. I was on rice and eggs and bananas and applesauce for two weeks, and my stomach seemed to get slightly better. Then I started adding in gluten-free bread and cottage cheese and peanut butter. And now, everything I eat is making me feel terrible. I think I'll try Jean's suggestion of potatoes, (chicken if I can stomach it), applesauce and bananas. Boy, I'm going to get skinny really fast!

Any other advice for me? I so appreciate this resource - this is invaluable. Otherwise, I'd be stuck with doctors who really know nothing about how to treat LC.

Thanks,
Beth
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tex
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Post by tex »

Hi Beth,

If you're casein intolerant, then of course, the cottage cheese may be the source of your problems. I think that most of our members can tolerate peanut butter, but for some reason or other, it causes problems for me, even after my gut has healed. The same goes for almond butter. Others have had problems with nuts during flares, but can handle them after they are in remission.

Also, I couldn't eat bananas without getting sick, back before my gut healed, but now I can eat all the bananas I want, without any problems.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Beth »

So, based on your comments, do you think I should call my doctor? Or should I just keep experimenting with my diet? I know there's not much my doctor can do for me, other than prescribe meds, which I don't want - but is there any thing I may be missing that I should confirm through tests, etc? Seem to have a lot of the autoimmune/adrenal fatigue symptoms.

Thanks,
Beth
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tex
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Post by tex »

Well, I certainly don't want to advise you not to visit your doctor, because I'm not qualified to offer medical advice. However, as we both know, doctors are trained to prescribe drugs, and if you don't want to go that route, there probably isn't much that your doctor could do for you, other than to rule out any other issues that might possibly be causing the symptoms.

If you have been eating small amounts of gluten all along, on a fairly regular basis, and you happen to be a latent celiac, then you may have accrued sufficient damage to the villi of your small intestine by now, such that it may take a period of several months, or possibly longer, on a strict GF diet, in order for the damage to heal, and the symptoms to subside. IOW, it's possible that you may have become a full-blown celiac in the years since you've been diagnosed, if you were originally gluten sensitive, and have continued to ingest gluten. I'm not saying that's what has happened, I'm just saying that it's a possibility, and if that happens to be the case, then it may take longer for you to recover on the GF diet, than it did the first time.

One thing that you might want to consider, if you can't get relief from the diet alone, in a reasonable amount of time, is to do what several members have done, and that is to take a med, (Entocort, for example), just long enough to get your symptoms under control, and your system stabilized, and then taper back off it, and let the diet take over again.

There are other possibilities, of course, such as C. diff, or some other bacterial or parasitic problem, but in a case such as that, there will usually be more pain involved, and pathogens such as C. diff, or E. coli, usually result in blood in the stool.

So, if you suspect that it might be something other than LC, then a doctor visit might be worthwhile. The classic celiac blood tests require that you be eating gluten on a regular basis, though, in order to provide valid results, (otherwise you will get a false negative). Several of our members have had C. diff infections, but it was usually they who insisted that they be tested, rather than the doctor's idea. In fact, one or two had to practically twist their doctor's arm to get her or him to give them the test, since most doctors consider that to be a "rare" problem.

If I were in your shoes, I think I would start by cutting all dairy and soy products out of my diet for at least a week, to see what happens. Also, most commercial GF bread is so coarse in texture that it might irritate a colon that is already overly sensitive because of a flare. The only GF bread that we have found that's reasonably close to "regular" bread, is made by Anna Sobaski, and is called Manna From Anna

For many of us, MC tends to cause us to have all sorts of autoimmune type symptoms, such as hypothyroidism, adrenal insufficiency, chronic fatigue syndrome, arthritris, etc. Usually, the symptoms eventually go away after a strict GF diet has had sufficient time to work.

You're very welcome,

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Polly »

Hi Beth and Welcome to the family again!

Sorry to hear about your relapse. I agree with all that has been said so far. Katy's idea of getting Dr. Fine's tests is a good one, I think, if you are so inclined. You can check them out at www.finerhealth.com. That way you will find out EXACTLY what you need to avoid.

I have a few questions. I know that you're not fond of meat, but do you eat seafood and eggs? Whoops - gotta run - hubby needs computer. Will be back later.

Hang in there......you WILL get better.

Love,

Polly
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Post by Beth »

Thank you all so much for your feedback and support. I can't imagine where I'd be without this website - still sick, sick, sick! I've been staying away from dairy, and I think it's helping. Very wobbly, though. Got a migraine today - feel like my body's a bit of a wreck, but hopefully will get back on track very soon.

By the way, Polly, yes I do eat eggs and seafood. Good thing or I'd be very limited in protein sources.

Thanks again - I'll keep checking in with you all for more suggestions/guidance/support.

Best,
Beth
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Post by Polly »

Mornin' Beth!

Good news that eliminating dairy may be helping some! We'll take any success we can get - no matter how small, right? LOL!

With regard to diet changes, there has been somewhat of an evolution here. Way back on Sally's board, those who decided to go GF mainly substituted non-GF grains for GF ones and tried to avoid any processed food with gluten. I started this way, and it was time-consuming to read all of those labels, call manufacturers when in doubt, keep lists of "safe" foods, revise old recipes, etc. It was during this time that some of us began to realize that we had other food intolerances in addition to gluten, which made this process even more difficult.

Then along came Matthew, who had discovered a diet (by trial and error) that worked for him where he avoided all processed foods and relied mainly upon fresh, whole foods. His famous comment about "shopping the perimeter of the grocery store" referred to the fact that most of the whole foods are around the walls of the store, with most of the processed foods on the shelves in the middle. Gradually, some of us began to find that we did best of all when we ate no grains at all - not even rice.

Soon after, along came Karen and Joanna, who found through research that the "paleo" diet seemed to incorporate the principles of the diet that those of us with multiple intolerances were finding to be the most helpful. I think Karen was the first to jump right into the paleo diet..... and she surprised us all with how quickly her MC went into remission - without any medications. Did you see her recent post where she is now running MARATHONS?

My thinking is that those of us with MC and multiple intolerances (MIs) have hunter-gatherer genes, which have not yet evolved enough to be able to handle grains/dairy over the long haul. Most of us have ancestors who lived in the British Isles and other parts of Europe where the h-gs lived. (Irelend has the highest incidence of celiac disease in the world).

I think that by jumping directly to the paleo diet, improvement can occur more rapidly. Plus, I am convinced that it may be the healthiest way to eat! And of course, it is much easier to just eliminate certain foods like grains and dairy than to try to discover where they may in hidden in processed food. I know it seems overwhelming to think about it at this point, but those of us who are "paleo" will tell you that it becomes SO easy! If you wish to pursue this, I would recommend getting a copy of Cordain's book, "The Paleo Diet".

If you would like to try this approach, just say the word, and our fellow paleos here will be happy to help. We all feel so wonderful on this diet that we often seem like religious zealots! LOL! Of course, whatever you decide to do, we are here for you.

Love,

Polly
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Beth
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Post by Beth »

Hi everyone,

Today I ate a little bit of butter - forgot that it was dairy - and about six hours later I was almost doubled over in pain. At least I think that's what caused my cramping and D because that was the only thing that was different from yesterday. Oh, except I did also have a little bit of low-calorie syrup. The ingredients say, "High fructose corn syrup, water, cellulose gum, salt, natural and artificial flavors, caramel color, sorbic acid, and sodium benzoate, sodium hexametaphosphate." As I'm typing these up, I'm thinking, "Well, no wonder you got sick!" I'm not exactly sure what in the syrup would have caused such an intense reaction, but from what I've been reading "natural flavors" can be a problem, right? And also, I guess some people react badly to HFCS? Any thoughts on this?

Also, Polly, I was reading your post in the diet section about how you figured out all of your sensitivities. How did you do that? Did you get testing done by Dr. Fine? Or did you just do a process of elimination? Part of why I'm asking is because 1.) his tests are extremely expensive, and it seems a little crazy to me to pay that much money to confirm whether I'm sensitive to certain foods when I can just try the elimination diet myself; and 2.) I'm trying to figure out if there are other benefits to these tests that I'm not seeing yet. For example, do they tell you how much damage has been done to the colon? Or would I need to have another biopsy to tell me that? If anyone could delineate the benefits of these tests more clearly, I would really appreciate it.

Thanks,
Beth
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Post by tex »

Hi Beth,

Most of the stool tests at Dr. Fine's lab check for antibodies to the primary proteins in certain foods. While a few of us are also intolerant to certain sugars, (lactose in milk, for example), the main problems we have are caused by the proteins in these foods - gluten in wheat, casein in dairy products, zen in corn, albumen in egg whites, etc. With the exceptions of the tissue transglutaminase test, and the fat malabsorption test, (which check for damage, or potential damage, most of the tests are for antibody production.

I believe that most of us here have found our intolerances by trial and error elimination tests. In my case, for example, I found my intolerances before I had ever heard of Dr. Fine or Enterolab, and many of the original members of this group found that diet could control their symptoms even before there were any reliable tests available. So, there is absolutely nothing wrong with discovering your intolerances by using an elimination diet.

Your problem yesterday could have been caused by either the butter or the syrup, or it could have been due to both. If you crave something sweet, instead of corn syrup, use honey or maple syrup. For a while, before my gut healed, maple sugar, (or syrup), was the only sweetener that I could tolerate - even honey caused problems. You are correct - there are way too many questionable ingredients in corn syrup, not the least of which is the HFCS itself.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by mle_ii »

I'd say it was the fructose. Try again without the butter but use honey only. It's pretty high in fructose as well, but maybe not as high as the syrup. Apple juice is probably one of the worst "natural" forms of fructose, worst as in amount of fructose per grams of sugar.
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Post by artteacher »

Hi Beth, nice to meet you!

I'm like Polly, sensitive to lots of things. I just thought I'd suggest starting with a bare minimum diet, and adding things to it, rather than subtracting foods from a rather full diet. You might be able to shorten your experimentation time that way. I think just about everyone would agree potatoes, carrots, sweet potatoes, & beef are safe to start with for 3 days or so. Then if you feel better, add foods back in in order of their risk (maybe canned pears next, or applesauce).

And I had one other thought whne I read that you had autoimmune-like aches and pains. I do also, and went to an endochronologist last week who diagnosed Hashimoto's Disease, (a autoimmune thyroid problem) and after 2 months of being on a higher thyroid dosage he'll will test pituatary and adrenal gland functions. I've seen Rheumotologists and Gastroenterologists 'up the wazoo' who did not catch the hormonal connection to my symptoms. Anyway, I've digressed, but the original thought was maybe to consider a endochronologist.

Talk to you soon,
Marsha
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