Doctor's reaction to Dr. Fine's tests

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cludwig
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Post by cludwig »

Thanks Everyone,

I am definitely feeling the love and I can't express just how much I appreciate all of you.

When I was on entocort I wasn't on a gf diet as my GI told me diet didn't matter. So I was still having lots nausea and body aches which I attributed to the entocort. I now think a lot of that was the gluten. It did make me feel wired...and I had problems sleeping....but I was a lot sicker then...so maybe I could handle it better this time around.

So I'll wait to get the results of these tests this week and if nothing comes up and I'm still not getting control of the diarrhea...I don't think I'll have any choice but to give it another go. While I'm convinced beyond any doubt that gluten is the problem....my husband is starting to wonder....joked about force feeding me a pizza. He's been great...just has a strange sense of humor!


Thanks again for all of your wisdom...you are the ones who fought the battle and won.

Love,
Cristi
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tex
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Post by tex »

Cristi,

FWIW, once my symptoms started, I began to have sleep problems, and I wasn't taking any meds. Sometimes I couldn't sleep at all at night, (because of all the bloating, nausea, and body aches), but I would sleep almost all day. My sleep patterns became very erratic. After I resolved all my symptoms, and started feeling great again, I discovered that I couldn't sleep as many hours per night, as I had in the past, and that's still the case.

I average about five hours of sleep a night, and if I slow down during the day, (especially after lunch), I get sleepy. I sleep soundly when I'm sleeping, I just can't sleep enough hours. In fact, I can get by and function pretty decently with only 3 or 4 hours of sleep, but if I do that for a few days, then I'm able to sleep about 6 hours per night, for a night or two, but after that I drop back to the 5 hour level. This has been going on for about 6 or 7 years now, so I doubt that it will change. I suspect that gluten intolerance has permanently altered the sleep patterns of quite a few of us.

Anyway, what I'm trying to say is that the Entocort may not have been the biggest factor with your sleep problems.

Love,
Wayne
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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 cludwig »

That's really interesting Wayne. I am starting to think the side affects I blamed on entocort was just this disease or the gluten. Well, if things continue as they are, I will find out. That is too bad as sleeping was always a way for me to cope....that and exercising. If I can just get to a point where I don't feel sick...I'm sure I can find alternative ways to relax.

Thanks again. Love,
Cristi
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Post by starfire »

:grin: I'd like to throw in my 2 cents worth here. I had ALL those symptoms myself. Nausea, vomiting, body aches, bloating, sleeplesness (still have some of them) before I ever went on any med. I think it is definitely part of this disease. It may not be life threatening but it sure is life altering.

Love, Shirley
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Post by Polly »

Cristi,

You are on the right path, and one of these days the diarrhea will disappear.

I'm not exactly sure but I think Joanna took Entocort for the first 6 months that she was on the GF diet. And it took CAMary about 15 months on the GF diet to be able to stop her Asacol. After diagnosis I took Asacol for 2 months with no results, then stopped it and went DF/CF. It took me almost 9 months on the diet alone to see my first formed BM. I can't believe I kept at the diet without seeing results for so long. In retrospect it was only because of the love and wonderful support from the folks here that I was able to hang in there.

PATIENCE is truly necessary (and a little blind FAITH that our experiences here will apply to you - LOL!). It is much easier said than done, I know.
However, it is not at all unusual for it to take 6 months to a year before you see results from the diet - especially if one is multiply-intolerant. But you WILL. Repeat after me......I WILL see a fully formed BM, I WILL see a fully formed BM, I WILL, etc.................. :grin:

Love,

Polly
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Post by celia »

Cristi,

You asked if I eat a lot of meat and potatoes. This is what I eat for breakfast, lunch, and dinner -----

4 - 6 oz of fish or 4 oz of turkey, chicekn or beef. I minimize my intake of red meat as it is the most acidic and don't eat pork at all. I eat a whole array of fish including salmon, shrimp, scallops, and tuna on occassion. There are many different food families in the fish kingdom, so if you are dealing with an immune reaction to one type of fish, another may be just fine. I buy my fish at www.vitalchoice.com or at the health food store for the most part so it has reduced levels of mercury. I also buy my other meat and poultry at the health food store.

With that I have a LARGE portion of cooked non-starchy vegetables. Sometimes one type of vegetables or sometimes two. I mean big, like 2-3 cups. I put olive oil or flax seed oil (alternate days) on the vegies for the extra calories. I never eat raw vegetables. I never eat potatoes as starchy vegetables, grains, legumes are a problem for me. They cause loose stools. However, I've never had explosive D., just loose stools. Other people in the forum with serious D. had more problems with vegetables.

The key to not being hungry for me is being sure I eat enough vegetables.

I have at least one 8 oz or more glass of freshly juiced carrot juice each day, and some days I have had up to 3 glasses. I'm back down to one as I can tell when I have had plenty as it accumulates in your palms and you can see the orange color. It's not harmful but it's a good measure of when you have had a sufficient amount. There was a period when I thought I couldn't tolerate carrots, but I'm fine with them at present.

I might have some nuts or nut buttter with the above, but there have been periods when I couldn't tolerate nuts. I have some trouble with them now, as they are also on the acidic side. I find that body does its best job of healing when the diet is largely comprised of alkaline foods.

I generally don't eat fruit. I was trying it again, but find it's not working out so well for me.

It's not an easy diet, but it is very healthy and I feel very satisfied. Junk food and processed food no longer appeals to me! I now realize how harmful it actually is to our body. Not that I would be rigid about it, if I had the option, as I don't think that's healthy either!

Hugs, Celia
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Post by celia »

Polly, Wow...six months! What you wrote really gives perspective. You are so courageous! Everyone on this forum is. Love, Celia
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Post by celia »

Cristi,

Your naturopath may be right. It's hard to say without seeing the test results, perhaps the marker is only slightly elevated. However, you paid a lot of money for that test, so be sure to get the most out of it! Like I said, I always ask my naturopath to call the clinician at the lab to get the their analysis of the test result. Which is appropriate unless your naturopathic physician has many years of experience in interpresting these tests.

I don't know how long you have been seeing your naturopath or if you checked her educational background to make sure she has had solid training. There are only two or three good naturopathic colleges in the
U. S., I beleive they are located in Washington and Oregon but I'm not 100% on that. My acupuncturist told me not to waste my time seeing anyone from any other schoool as their training is sub-standard. My naturopath went to the National College of Naturopathic Medicine in Portland, Oregon.

I don't want to cast any doubt on your naturopathic treatment, but it's always good to make sure you have a solid practitioner! I'm glad she is treating your adrenal issues, it's part of the whole picture, but make sure she is addressing your gastrointenstinal issues too. That's the most urgent priority.

I also had a lot of the symptoms you speak about, but they didn't all go away on the gluten free diet. They got much better, some symptoms dissolved, but there were remaining symptoms which indicated other underlying problems.

Good luck! Celia
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tex
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Post by tex »

Celia,

Am I reading your post correctly? You consider your acupuncturist to be a qualified accrediting agent for all the naturopathic educational facilities in this country? Sticking up for one's old alma mater is to be applauded, but isn't that kind of taking it to extremes?

I'm not saying that she/he is not correct. For all I know, that might well be the case, and I apologize for even bringing it up, if that is inarguably true. I do think that it might not hurt to look for a second opinion from someone less likely to be so biased, however, before issuing a blanket condemnation of every graduate from all the other similar educational facilities in the other 48 states.

One should be a bit cautious when attempting to discredit the qualifications of others, especially with a blanket condemnation, if you know what I mean. I realize that you were just repeating what someone else said, but remember, anyone in the world can read these forums.

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 celia »

Tex,

I think you are not reading my post correctly or I made an error when I wrote it. I will go back and check it. To be clear, my acupuncturist did not graduate from the same school, and is not recommending his alma mater.

Yes, I did trust my acupuncturist's recommendation when I was considering seeing a naturopath. He's a very grounded, knowlegeable, and experienced healthcare practitioner. Why wouldn't I trust him? Actually, why would I see someone I don't trust? He didn't personally know of the naturopath I was considering, but he has familiarity with naturopathic colleges so he recommended that I check her training. Just like we all know that Harvard is a good college, why wouldn't someone in the health care profession know about colleges in a related field?

I also checked the qualifications of the naturopath I was considering with the integrative medicine doctor who was treating me. She wasn't able to treat heavy metal toxicity so hence, I needed to find someone who could. I try to be very thorough.

I'm not trying to discredit anyone. I know from my own experience that there are sub-standard natural health care practitioners. My only motivation is the wish for Cristi to have the best care possible. But perhaps it was something I shouldn't have mentioned.

Celia

P. S. Just to explain the progression, my acupuncturist was consolidating his practice in his main location about 60 miles from me, and I needed to get treatment for heavy metal toxicity. That's why I was asking him about naturopathic practitioners to begin with. I also mentioned the college my naturopath attends in the message, because I think her training is exceptional.
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Post by Lucy »

Cristi,

Trust me! I had a list of autoimmune symptoms long enough to circle the globe when I first went gf as a last resort sort of thing as I couldn't stand it anymore.

From what I've read here and on other forums, plus the people I've met "In the flesh" with similar problems, I believe this is quite common, so please don't think it's not highly likely to be able to see all of them vanish in time with diet, even if it's not a particularly healthy diet, sometimes.

Sooo...if you definitely notice improvement in the way you feel (not necessarily with the fatigue part or even lesser amounts of diarrhea for the time being) then that should be your clue that you are on the right path.

If I hadn't had the severe flare of arthritis in my feet before I started just the removal of obvious sources of gluten, I might've been less motivated to continue on this path.
When all that went away, along with other major body discomfort,, it was pretty much a no-brainer, but many people don't have a barometer quite as obvious as that -- I mean, all of a sudden I could get my shoes on and walk without feeling like I would fall!

Without these definite quick signs, I would've still been having liquid stools for a while, albeit fewer with less volume, but then I'm not sure I would've been an accurate enough counter of trips to the potty to be as encouraged by that small difference. I may not have been encouraged enough by just the diarrheal improvement to stick with the program and this group -- I have no way of knowing what I would've done. I think that the main reason I was in such bad shape is because I'd been ill and eating gluten for such a long time, never dreaming that it had anything to do with any of my symptoms, much less ALL of them!
(Fatigue part, as I said, takes longer, due to the time it takes to heal, so be patient with that.)

Anyway, my experience is what makes me so amazed with those, like Polly, in this group, who didn't experience complete remission with diarrhea for soooo long, yet kept with it, as Polly mentioned, on "blind faith" with out seeing improvement in diarrhea for many months.

In other words, if I were you, I would concentrate more on the absolute removal of any traces of gluten and any other proven delayed food reactions by enterolab for as long as it takes than any other refinement of the diet. That should help to get the pressure off you just a bit.

I can't remember whether or not you have tested for dairy casein antibodies, etc., with enterolab, but if you have some results from those, go by them as if those are positive, you shouldn't be on them at all. That's enough of a pill to swallow at the moment.

Other than that, "easy to digest" foods in an easily digestible form may be needed for a while until you notice that you can gradually add some things back into your diet. You may be the best judge as to which foods and forms of foods without your allergens you are able to tolerate, and when you are able to tolerate them. If a food fails the test, you can always back up, and try again later.

I know that Karen will probably remember back when I was eating LOTS of frozen veggie mixes that I just brought to a boil in a little water, and then steamed to death.
With that, I would often fix some Uncle Ben's boil -n bag WHITE rice, and of course, any variety of meat, fowl, or fish. Occasionally, I'd have something like a peach or pear for dessert, but I never really felt like that part was necessary.

You'll notice that I said WHITE rice. At the time, it just seemed to me that I could tolerate white rice a little better than brown.
(Gee, I sure hope that brand and product isn't fortified -- that would be a no-no for sure! Best check the package on that one before purchasing.) Somehow, I just think that this gentle bulking up of the stool was helpful for my then flabby muscled gut, but everyone may not have the same experience.

Actually, now I'm perfectly satisfied to have a veggie and a little meat for a meal due to the fact that I get more starchy foods at other times. This is how simple a beginning diet can be, and it doesn't require as much nut oil as what you are eating now. I would often add a little bit of toasted sesame seed oil to the veggies on the stove, but just a few drops. Also, I would add some of the "Oriental Seasoning" that they sell at Whole Foods to the veggies fixed this way.
My mom likes the liquid from veggies made this way as a gravy for her meat.

Usually I would fix this with a special way I had of fixing those little thin center cut pork chops which I would trim even further than they were already. These were the pork chops from Whole Foods -- delicious combination.

Only a few people seem to be actually unable to eat things like legumes, rice, potatoes, and tomatoes, so if I were you, I wouldn't worry too much about those until things have cleared up so much off the definite stuff that it will be much easier to tell the remaining allergens, if they indeed are there, by elimination because you won't be having such frequent episodes of reactions. They will be, hopefully, more isolated, in other words.

I'm going to post a separate thread later, just to mention my observations of how we have changed our way of helping our first newcomers to the diet since our wonderful new board has been created. I hope that the oldies among the dieters will contribute to that thread, so that our first trainees will understand from whence we've come even better.

Uh oh, Mom's hallucinating badly now, so if you don't see me... Luce
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Post by tex »

Celia,

Yes, it appears that I was indeed confused about the ivory towers mentioned in your post, and about who passed through which portals of higher learning. Sorry about that, I shouldn't have even mentioned it, since it was irrelevant to the primary reason for my post in the first place.

The issue, of course, is the inclusion in your post, of your acupuncturist's unprofessionally biased statment of opinion, concerning the alleged inadequate qualifications of graduates of all educational facilities other than the few that he chose to bestow his blessings upon. I wasn't confused about that, was I? Here's what you said:
My acupuncturist told me not to waste my time seeing anyone from any other schoool as their training is sub-standard.
That's pretty clear, and it may well be good advice, for all I know. I'm not disputing that, nor am I concurring with it. If you had made that statement, it wouldn't have mattered, since you are not a licensed professional, so your opinion doesn't carrry the prestige of that license. You and I can state our opinions as much as we want, and as long as we don't get completely out of hand with it, never stir up much of a wave. A licensed professional, though, is held to higher public standards than a layperson, when offering advice to the public.

Expressing an opinon of that type in private, is not particularly risky. Disclosing a statement such as that in a public venue, however, is an entirely different matter, since such indiscretions can raise the issue of legal recourse for defamation of character. This is a public venue. The qualifications of your professional consultants are irrelevant to the inappropriateness of including that statement in your post, and I would bet that your accupuncturist's hair would be standing on end, if he knew that you were posting that statement for all the world to see, assuming that he is aware of the legal implications.

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 cludwig »

Hi Everyone,

Well, Ive been sticking to the poultry,carrots, potato,and cod diet. I'm not enjoying it , but I have to say I had a better than average day...so that's what is most important. Two things have changed...the diet and I halved my adrenal steroid dosages. I was having full blown panic attacks fo several days. They were much better today. Also interesting is the fact that without the fruit...i had less of the hypoglycemia feelings and intense feelings of hunger. I also tried some squash today, I'm hoping that agrees with me.

Personally, I really like my naturopath.....but I'm not sure she is the best person to help me with lymphocytis colitis. The reason why I keep questioning all of you to death about diet is because I don't think she's had the greatest advise in hind sight. I've been on a really restrictive diet for 6 months....but not the right diet for lymphocytic colitis. So if I seem really impatient with the diet ...it's because I've been working with incorrect info for 6 months. I have to keep telling myself that I've only had the gluten out for a little over a month.


While I am feeling better, I still have a lot of crummy days...I just haven't gotten the dramatic relief from going gf yet. Thats why I keep going in for more tests...which are coming back weird. I don't know if gluten can mess up the whole endocrine system or if something else is going on. But I'm still never going to consume gluten or any of my other intolerences.


I have my thyroid iodine uptake test tomorrow.So I'll let you all know how it goes. Thanks again for all your wisdom. I'm taking it all in. I know I'm at the right place.

Love,
Cristi
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Post by tex »

Cristi,

Don't feel bad about having to change your diet after 6 months. It took me over a year to realize that I would have to elimnate some other foods items besides gluten. That was before I found this incredible group of people. I could have saved a lot of misery, if I had found them sooner.

Good luck with your test tomorrow.

Love,
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 Lucy »

Cristi,

The gluten absolutely can mess up your endocrine system. That's why I no longer have a thyroid. And yes, my tests were all weird as well. It was right after having the thyroid out that I had the colonoscopy, so it was too late to save the thing, I guess.
If I'd have known about the gf diet much earlier, I might've been able to reverse this cascading situation. I'm sure that many of my other organs have healed from the huge immune reactions I was having.

Can't tell you whether or not your thyroid will reverse itself or not, but it seems as though I read somewhere (was it braintalk??) that some had begun to have to take much less thyroid medication once they were gf a while. At least you got on the diet before your gland up and died like mine!! We'll just have to follow your progress on medication, and see whether or not the diet can be associated with requiring less thyroid medication. If it's beneficial like that, I'll just have to be envious! I must say though, that having a good endo, I've not been bothered a whole lot by having to take the two thyroid meds. Armour is one of them, and it's dirt cheap!

Take care. Luce
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