having major acceptance issues (blame the doc)

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fluffypoodle
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having major acceptance issues (blame the doc)

Post by fluffypoodle »

hello, long time, no talk!

so here's an update of sorts--i've been on Asacol HD for months now--my doctor believes it is the best thing ever. The med stopped the big D, and the frequency and urgency--but i'd still get mucus and wet gas and horrible bloating. he suggested that was IBS.

i then noticed that when on Asacol, i almost get the opposite of D. i still have BMs, but not even daily, and when i do--i feel like they aren't much at all and the leftovers are sitting inside, making me miserable, heavy and bloated. that isn't fun--especially when you are overweight and trying to lose weight.

so last week i had my follow-up colonoscopy because he wants to see if the MC is gone--he trully believes that it could go away. I do not yet know the results of the biopsies, but of course my colon looked perfect to the naked eye. I explained my Asacol dilemma, and he suggested that I lower my dose by half.

even lowering it to 1/4 of what i was taking gives me the same semi-C situation. but stopping it for 2 days brings me back to my initial D stage.

my mom (who is my BFF) believes it is time for Enterolab. My doc and my husband both believe that food has nothing to do with this. i've been "gluten free"--and i say that lightly because i am terrible at being strict. as i said--i am having such acceptance issues, and the fact that the doctor doesn't believe it is food is making it worse.

i worry that i'll spend a bunch of money on Enterolab--much like I did on the ALCAT (blood) testing--and still feel that it was a bunch of non-medical bologna. I mean, i am starting to feel like ANYONE who sends their sample to one of these places can be senstive to SOMETHING.

do i sound insane yet? because i just cant get my logical, lawyer-mind around this. it is almot like i don't believe in this internet-based company. maybe it is because my ALCAT told me there are like 70 sensitivities i have. maybe it is because i feel like if this was legit--doctors would believe in this. maybe ii feel silly to "avoid normal things" and be that "special" girl in social situations based on something i was told by the internet.

i don't even know what i'm thinking anymore. thanks for listening to me ramble. please tell me what at least someone out there has ever felt this way. what made you a believer?
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Zizzle
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Post by Zizzle »

I ordered Enterolab tests all on my own, before I found this site, and when I was totally desperate with D. I didn't know anything about food sensitivities at the time. I honestly don't remember how an internet search got me there, but I was willing to try anything. A few weeks after I sent my samples away, I got "food poisoning." I was so sick, and I kept eating toast and pasta to settle my stomach. :shock: But the "food poisoning" was getting worse, not better. By day 8 I was ready to got o a hospital, and I realized this could not be food poisoning... Then my Enterolab results arrived. I immediately went gluten, dairy and soy free and was 80% better within 3 days. It was nothing short of miraculous how quickly I responded. I watched in amazement as my 4 month pregnant belly slowly flattened over the course of a few weeks. I could wear form-fitting clothing again!! I enjoyed diet-induced remission for several months, but alas, my autoimmune tendencies eventually came back and so did some mild D. I was also getting far too much gluten cross-contamination eating at restaurants, etc. But my MC has been manageable ever since I followed the Enterolab recommended changes (Gluten/dairy/soy - I was fine for eggs). I have since had a doctor order Cyrex labs Celiac Cross-reactivity testing which identified sesame seeds and buckwheat as problematic, then MRT testing which found 26 moderately reactive foods, several of which I cut out temporarily but eat now in moderation without much trouble.

I still believe Enterolab is the best of all the tests I've done, and I'm planning to order it for my daughter this year. I ordered the inexpensive gene test for my son last year. Incidentally, I showed Dr. Fasano, the well-known celiac doc, my cheek swab gene test results, and he didn't trust them. So he ordered the blood test...the results were exactly the same.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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tex
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Post by tex »

Hi Fluffypoodle,

Yes, you do have a dilemma, don't you. Clearly, since you wrote that post, you don't trust your doctor, and rightfully so, since he obviously doesn't know much about this disease if he actually believes that it is going to just go away on it's own. Further proof of his ignorance is the second colonoscopy. No GI doc who actually understands the disease would subject a patient to a totally unnecessary second colonoscopy, just to satisfy his or her own curiosity about the disease (he's using you as a guinea pig, to further his education).

Your continuing symptoms are due to your poor adherence to the diet. You're wasting time on the diet, and inconveniencing yourself unnecessarily, if you aren't in 100 % compliance, because the diet is not going to work without dedication and effort — there's nothing magic about the diet, it requires hard work and perseverance, in order to get results. And you are probably sensitive to casein, (which can be found in trace amounts in the lactose ingredient in Asacol). And to put the icing on the cake, you don't trust labs, because either you or your misguided doctor picked a lab that does blood testing to look for food sensitivities based in IgE testing, when virtually any experienced member here can tell you that such lab tests are a waste of your money, as far as gastrointestinal issues are concerned.

In short, as far as this disease is concerned, so far you have learned not to trust anyone, and that probably concurs with your need to be suspicious of most things in life, based on your professional experiences. Please be aware that you are in a different world here — we are not an assembly of lawyers and lawbreakers, and mendasity and deception are not a part of our daily routine.

Despite my rather brusque tone (which hopefully will grab your attention, and entice you to start thinking more logically), I totally understand your situation, and I sympathize with you, because virtually every one of us has felt at one time or another, the way you are feeling. None of us likes to be jacked around by the system, and misled by overpaid "experts" who don't actually know what they're doing. That's why we're all here, sharing information about this disease — information that's actually accurate and reliable, to the best of our knowledge, because it's based on the real-life experiences of many hundreds of people who have been there, done that.

Sooooooooo, in view of your learned skepticism, it would be pointless for me to mention that EnteroLab is a fully-accredited lab, with many, many thousands of satisfied clients, and with no complaints filed against them, and there would probably be little value in me pointing out that most of us here have used the information that we gained from their tests to get our life back.

The EnteroLab stool tests are accurate and reliable simply because they check for IgA-based antibodies in stool. The antibodies to food sensitivities are generated in the intestines, not in the blood, so why on earth would anyone be naive enough to look for those antibodies in the blood? IgE-based antibodies are readily picked up by the blood, but those antibodies are associated with classic allergic symptoms, not food sensitivities that cause GI issues. By the time that IgA-based antibody levels in the intestines reach the astronomical levels necessary for them to begin showing up in the blood, a huge (and intolerable) amount of intestinal damage has already accrued.

Zizzle said it very well, and I totally agree with her. I'd also like to point out that motivated members of this discussion board get their life back. As one of the member's tag lines on this board goes, "To get something you never had, you have to do something you never did." That can be paraphrased to reflect the subtleties of treating this disease to say, "To get our life back, you have to stop doing what you have been doing in the past, because that obviously isn't working."

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.
fluffypoodle
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Post by fluffypoodle »

thank you so much, both Zizzle and Tex! you guys are so helpful, as usual!

I think part of my 'issue' is the fact that my symptoms were never as bad as some people's on here. when i did have D--it was never more than, say, 2 times a day. i wasn't losing weight (goodness, i almost wish--instead i'm overweight and can't take it off!). i wasn't chained to my home or my bathroom. for the most part--i can function pretty well. yes, i have to wear things that are loose around the swollen belly. and yes, i carry Poo-pourri with me as insurance. but it's never been as severe as what i am reading.

the ALCAT blood test was actually my idea. this was before i've seen a rheumatologist, and i didn't know i could have something auto-immune (still unclear as to what, if anything, i have). i was feeling tired, cold, etc and found ALCAT on the internet. seemed like a good idea. as i said, it told me i had over 70 intollerances--not gluten, funny enough--but things like chicken, whey (but not cassein), turkey, cod.

anyhow--it makes sense about antibodies being produced in the intestinal track... i think it is time to take another look at Enterolab's website...
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Post by ladyathome »

Dear FlufflyPoodle,

It seems you have become exasperated with your doctor(s), spent lots of money on useless tests, and you aren't fully sold on diet. I was there five months ago.

I had a colonoscopy in Dec. 2010. My GI said, "Looks like you've got some CC, but otherwise you are good. Some people have some luck with cutting gluten, but otherwise, I've seen worse." I came home and searched CC and got nowhere. I did cut gluten (about as much as you have). I suppose the fact that the GI made so little of an issue, my family doctor didn't make an issue, and the internet was no help, I really sort of forgot I had a diagnosis. After almost 3 years of going to my family doctor, a neuropathic doc, and an osteopathic doc, and having out of pocket expensive tests and food allergy testing done, I wasn't getting any better. I was certain I had something major wrong with me. I finally went back to the GI in February with mucous and blood in my stool. He did stool samples, and when all clear of any other issues, he says, "Remember when I told you you had CC? You're just having symptoms from that. There's really not a lot you can do. I didn't see where it was so bad we need to medicate, but if you want meds, I can prescribe them."

That's when I came home, found this site, and finally began to get answers and almost as importantly, support. I read every post I could, ask questions, then just went for it. I cut the big 4 and cut most of the things that others are intolerant of on here. I honestly can not believe how quickly I began to get well. I did the Enterolab testing after about 1 1/2 months. I was able to put back into my diet everything except G, S, tuna, and oats). For me, the Enterolab testing was the final piece of the puzzle, but also, I like to see things in black and white. With the limited diet, I was scared I'd go back to where I was without knowing for sure what I could have and couldn't have.

IMO and experience here, you have found the (only) place that has answers, not to mention support. I feel like I owe these people more than I could ever repay for their willingness to share their stories and expertise.

Enterolab was the best money I have ever spent. I'm living a normal life, and as of now, as long as I keep those 4 things out of my diet, I can eat pretty much anything. I'm exercising and feeling healthy for the first time in over 3 years!
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Post by fluffypoodle »

hi lady! oh wow, how similar is your story???

when i first had my colonoscopy in Nov 2011--i was told that i'll get a call if a biopsy shows anything, but no news is good news. i did not get the call. in Nov 2012 (so a year later) i went back to the GI doc who walked in and (thinking that my colo was just weeks ago) said "we found something called MC, we can treat this! here, have some Asacol." he also told me then, and every time since, that MC is not nearly as bad as, say, crohns, and that it can just go away.

this repeat colonoscopy was his idea, to see if the inflamation is now gone. after i had it, he told me he was glad to see it didn't "change into ulcerative colitis" as it can sometimes. if the MC is still there when i see him for the results, he wants to try different meds. when i again asked about gluten, he said "you don't have celiac, but if it makes you feel better--go gf."

yeah, i have trust issues.....
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Post by ladyathome »

They know what they know, but they don't know this! I want to take mine a copy of Wayne's book and say please read this! I actually did tell my neuropath doc about this site and Enterolab. She is recommending the lab now.
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Post by Zizzle »

fluffypoodle wrote: when i first had my colonoscopy in Nov 2011--i was told that i'll get a call if a biopsy shows anything, but no news is good news. i did not get the call. in Nov 2012 (so a year later) i went back to the GI doc who walked in and (thinking that my colo was just weeks ago) said "we found something called MC, we can treat this! here, have some Asacol." he also told me then, and every time since, that MC is not nearly as bad as, say, crohns, and that it can just go away.
I remember your story now...I wanted to sue your doc for malpractice!! Please, get a new GI doc!! Better yet, forget all GI docs (I did), fix up your diet, and if you still have issues, see an integrative medicine or functional medicine doc.

What autoimmune issues are your docs wondering about?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
fluffypoodle
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Post by fluffypoodle »

Zizzle,

i think we've discussed this before--but i have symptoms of a lot of things, specifically thyroid, lupus and sjogren's. the problem is that the only positive test i have is a high positive ANA. no other specific antibodies, thyroid labs are 'normal' (T4 is a bit low, but in the 'range'), etc. so--nobody is sure what's up. even my inflamation markers are usually normal. its like i have the "i am tired, fat, freezing cold and am falling appart" disease.

and i totaly have looked into naturopaths... The one i called wanted $600 for the first appointment, $400 for additional ones. Insurance will not cover. that's a bit excessive for my taste. You are in NoVa, no? where do you go?
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Post by Zizzle »

I see Dr. Gary Kaplan in McLean. He accepts insurance but balance-bills the difference. First appointment was expensive!! Haven't seen him in a year now that I see a rheumatologist and chinese medicine doc in DC. I am impressed that insurance paid for so many alternative tests through him (Genova Labs stool analysis, Cyrex Labs tests for intestinal permeability and celiac cross-reactivity). There is a functional medicine practice in Alexandria that looks interesting. Thought about it for my daughter. I guess the fanciest practice is the naturopaths on Wisconsin Ave - they don't take insurance at all.You could also try the Center for Integrative Medicine at GW.

I too had the tired, freezing cold, falling apart condition before it got worse and someone put a name to it. Dr. Kaplan firmly believes that autoimmunity is caused by permeable intestines and if I stay 101% GF and heal my gut, I will get better.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
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Post by Zizzle »

Most of my friends here have thyroid disease, and many kids I know are becoming gluten intolerant or wheat and milk allergic. I must be a magnet for this stuff, but I'm alarmed by how many people are affectedin NOVA and DC! I need to start charging for all my consultations!! :grin:

I was talking to a local pediatrician about the potential causes, and we both wondered whether our region's pollen types, pollution, eletromagnetic radiation exposure, and particular microbes in this area might be to blame. Then again, we get most of our water from the nasty, polluted Potomac River. The mid-Atlantic has the highest level of childhood food allergies in the country.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Post by fluffypoodle »

lol, i have no doubt that the water has some exotic, unexplainable bacteria in it. same with the air quality here. all of my office suffers from either migraines and/or sinus issues.

i really appreciate the thoughts on doctors! my rheum is also in DC. I will take a look at the other suggestions! i think it was the group on Wisconsin that i looked at--and almost fainted at prices. and i am not a price-fainting type.
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Post by JFR »

You have a decision to make. Either you can continue on the path you have been on or you can give a strict elimination diet a try, with or without the guidance you can get from Enterolab testing. I did the Enterolab testing and it came back that I was sensitive to everything tested. I wondered whether everyone just tested positive to everything but perusing the accumulated results on this forum I realized that that was not the case. Also I had already eliminated the big 4 and was already having significant benefits. My suggestion would be to put your skepticism aside for a few months and try strict dietary control. What do you have to lose?

Jean
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Post by gluten »

Hi, If the whole office has health issues the water should be tested. If you have an HAVC system it should be ckecked and cleaned every year. HAVC systems have an outlet and a inlet. I have heard of cases where the inlet was next to a parking garage and the exhaust from the vehicles were drawn into the system. Read the case of Legionaire's disease that effected many people at a convention. Jon
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Post by Leah »

HI there. I am here to also tell you that my cousin sent her sample in the Enterolab ( because she was having issues) and they all came back negative. Turns out that she is just lactose ( and all sugars to a degree) intolerant.

If i were you, i would just bite the bullet and do the Enterolab tests. It will give you the concrete answers you are looking for. I went cold turkey on most of the culprits while taking Entocort. (Asacol seemed to make things worse- probably the lactose in it) and felt better very fast. Down the road, I had to also take soy and peanuts out, but have been able to add other things back in since.

Your GI sounds like he doesn't know what he is talking about. I agree with Tex.

many of us have thyroid issues. I know when I am cold, my thyroid is off. That's another discussion, but you may need to be on desiccated thyroid meds. instead of synthetic.

Going gluten free only works if you go GF completely. If you are producing IgA antibodies, they can stay in your system for up to 4 months!

Keep us posted. I hope you find the answers you are looking for
Leah
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