Newbie.....sort of

[Rome]

Hello,

I say I am sort of a newbie because I found this forum years ago, but for some reason stopped using it and have now come back. I was diagnosed with MC about 5 years ago, but have been suffering for about 6 yrs. I was allergy tested for foods and was told I was allergic to about 10 different foods. Some foods I could tell affected me through elimination diet, and so I have been able to "control" flare ups by avoiding certain foods. However, I am a nurse working the night shift in a busy ER. There are still times (seem to be getting more frequent) that I can eat something that hasn't bothered me and then all of the sudden, an hour or so later I will start hurting and hope I can make it to the bathroom in time. I have been feeling really tired all the time, and decided to get a checkup to make sure I wasn't anemic again, and my PA asked me when the last time was I saw a GI (she was sympathetic because she has GI probs too) and I told her about 5 years ago, so she suggested I see them again, and suggested a new doc. Needless to say, I have made another appointment with a new GI doc (the first one really didn't seem to help me, or even follow up with me). I will see the new one in April. I am hoping I can get him to test me for gluten sensitivity. I know there are tests out there, and have really been tempted, but have decided to wait to see what they say. I will give a honest try to the gluten free diet to see if that helps after I see my doc. I want any tests he does to be accurate.

Any suggestions for questions that I should ask this doc when I see him?

Thanks for listening!

Romanita

[Stanz]

Welcome back, Romanita,

Being fairly new here, I am certainly not the most educated, but from personal experience I would highly encourage you to get the genetic testing done from Enterolab and I have no $ interest in recommending this, being a skeptic from birth. I did this only after finding this site last Oct. when I was dx w/both types of MC via colonoscopy and the solution was steroids, which I refused. My GI was typically clueless as to dietary causes of MC. My PCP was also clueless several weeks ago when I presented her with mounds of information on GS as a cause, even though her husband has CD. You cannot count on any tests your MD/GI does to tell you anything, IMO, nearly all of us here have been through the pointless western med tests for CD that are notoriously inaccurate. Not to damn your entire profession, but the reality is that MD's don't have the time - they rely on drugs.

I am going to post a link shortly about a very recent study that is very interesting. I hope you will read it. So, as to your questions about what you should ask the doc when you see him - ask him about diet. If he has nothing in his repertoire about diet, you need to move on.

Connie

[tex]

Hi Romanita,

Welcome back! I can't disagree with anything that Connie said - that's all good information. Be aware that the only way that you will test positive to gluten sensitivity, using one or more of the classic celiac blood tests, is if you actually have fully-developed celiac disease, (which a few members here do have, in addition to MC), otherwise, like most of us, you will get a negative test result, regardless of how sensitive you might actually be, to gluten. (Most of us are just as gluten-sensitive as celiacs, and yet we always get negative results, to the blood tests).

When it comes to testing for food sensitivities, Enterolab, (in Dallas, TX), has no real competition. Their stool tests are by far, the most accurate, and the most sensitive tests available, bar none. Unfortunately, though, most GI docs are either unaware of them, or mistakenly dispute the accuracy of stool tests when used for detecting food sensitivities. It is true, however, that Enterolab's tests are the only stool tests in the world, that have such reliability, and such sensitivity. They're a fully-accredited lab, and they hold world-wide patents on those tests, and no other lab in the world is licensed to use their testing technology. That's why they're so accurate - only one person, (who holds a PhD), does all the testing, so that interpretation of test results is never in question. That's the downfall of so many lab tests - different people interpret the results differently. That can't happen at Enterolab.

If you prefer drugs to diet, then ask for a script for Entocort EC - it's by far the safest, relatively effective medication available for treating MC. It's not as safe as the diet, of course, but unlike the other corticosteroids, the enteric coating prevents it from activating, until it reaches the ilium and the colon, so that no more than 15 % of the budesonide is ever absorbed into the bloodstream, thus greatly diminishing the potential for side effects. The 5-ASA meds that many GI docs like to prescribe, are comparatively poor for bringing remission - they're better suited for maintaining remission, after it is achieved. With the diet, of course, no drug is necessary, for maintenance - the diet will handle that, itself.

Be aware, though, that very few of us are able to achieve and maintain remission by eliminating only gluten from the diet. Most of us are also casein-intolerant, (the primary protein in milk, and all dairy products), and about half of us are intolerant of soya, the primary protein in all soy products.

Again, welcome back, and please feel free to ask anything that comes to mind.

Tex (Wayne)

[Stanz]

So, in the Drugs to Diet debate, please look at what I have done:

http://www.perskyfarms.com/phpBB2/viewt ... ght=#68897

This has worked very well for me. But, as often seems to be the case here, it would appear that recently soy may also be showing up as a problem for me. Still testing that.

[Gabes-Apg]

Hi there Romanita...

(greetings from Australia)
about 12 months ago i had a doctor wanting to test me for celiac. I ate wheat for 1 week so they could do the test
(as i had been avoiding wheat and gluten for 8 years or more)

they did the blood test and the results showed no gluten sensitivity, which was a load of bollocks. It took me two weeks to recover from having to try and ingest wheat/gluten, including having to take time off work

To reiterate what connie said, Most Specialists and doctors will follow the protocol they are given which is drug based. as most of us here have realised the drugs are a quickfix bandaid to the symptoms of MC, majority of us are aiming for long term 'whole of body' health which MC drugs can not provide.

From reading all the posts and comments on this forum, everyone is very different, what works for one person does not work for another. I wont lie, it is time intensive but self management is the key (diet/meds/natural). figure out what works for you that allows you work without having to dash to the toilet.
When i have to, i use loperamide mostly for the purpose of ensuring nothing bad happens when i have important meetings etc. but i am trying to my hardest not to have to do this.
and for most people it does change, what works now may not work in 12 months time

Good luck with your doctors visit. I hope they are supportive and open to your questions.
I think the key to a reasonable specialist is one that has diagnosed and treated MC patients before, if it was me that would be one of my questions.

Take care

[Rome]

Thanks Connie and Tex,

I will certainly consider the Enterolab tests once I see what the new GI says. After I was initially diagnosed I was prescribed an expensive medication (can't remember the name) that just made it worse. I tried Pepto as well with no results, just more pain. I was frustrated because the doc didn't follow up after the meds didn't work. Like I said before, I was tested for food allergies during all this because I did find out around this same time that my father apparently had many food allergies as well. Unfortuneately, I never found out what they were. The initial tests that were done many years before my MC diagnosis and showed a wheat and milk allergy, but when I did exclusive food testing, I was negative for wheat and milk. HMMM.....so, I have just been trying to eliminate foods on my own. I have been doing lots of research though to get ready for the big change. I just hope my girls don't end up like me. I have one that has a couple of food allergies, and the other complains of stomach pains when she eats certaintain foods. One has been tested for foods, the other only the basic foods they test for when they did the allergy testing for seasonal allergies. Anyway, I will continue to do research and hope my new GI will be MC savy and get me on the road to a "normal" life! I will definitely let you know what they say.

Thanks again!

Romanita

[Rome]

Gabes-Apg
Thanks for your reply! I have a brother-in-law in Australia. We will be visiting him next June. So excited! I am definintely anxious about my doctors visit. If at all possible I want to avoid drugs. However, as a nurse, I know that noncompliance means bigger problems down the road. (Nurses are the worst patients! ) Like I said before, gluten free diet is the next step. I will probably do the tests for Enterolab to determine my sensitivities. I am hoping my doctor will do some testing of his own.

Until next time!

Romanita

[Gabes-Apg]

Romanita

i think you will get great results from knowing the results of the Enteroloab and eating to suit that.
you will be surprised how different you will feel once you remove the offending foods from your diet!

where abouts in Australia is your brother in law?

look forward to the update once you visit the new GI

take care
Gabes

[Rome]

The name of the town escapes me right now, but I know it is not too far from Sydney.

I was just looking at the Enterolab tests trying to decide which one to order. Not sure if I should wait until after my appointment April 7, or go ahead and get it ordered. I am SO READY to get some relief! My husband's ex-wife was diagnosed with Celiac sprue a few years ago.....got very sick, but now seems to be doing fine. My husband is like "what are the chances that my wife and my ex-wife both be gluten sensitive!" Luckily his ex-wife and I get along great! Crazy huh? Anyway, looking forward to getting some answers. I just wish I would have been pushed this direction long ago. My PA is the one that suggested that I see a new GI and then try the gluten free diet to see if there are any changes. She said I have been suffering with the big "D" for too long! I agree!!!!

Til next time!

Romanita

[Stanz]

I did the full spectrum test, IMO it was worth every cent just to KNOW what I was dealing with here. I wasn't happy that I got one Gluten Sensitive gene from each parent, but knowing is everything. If you don't know - you don't know what to do.

It doesn't take much research here to see that almost none of us have been dx by our GI with anything other than MC - after that they have no idea what to do with us but give us drugs. It would be a true aberration from the norm if this new GI knows anything about food sensitivities.

You can surely wait, as this will most likely be an out of pocket expense. but the likelihood that you will be "prescribed" the Enterolab tests is practically zero. The Prometheus test (which Mayo Clinic owns and most MD's prescribe) only tests for the main celiac genes and statistically it is 1 of 100 w/CD, and new research shows 1 in 4 w/Gluten Sensitivity and I believe GS is just the baby stage of CD.

Having been dx w/MC 5 years ago and knowing the odds that you have gluten issues - I think the last I saw was 63% - I wouldn't wait, but again, that's just my opinion.

[Rome]

So the stool and genetic panel is the way to go? It will tell me if one of my parents had the gene? That would be great. If that turns out to be the case, I guess it would be safe to assume that one of my kids may become GS? I am still trying to find a good "reliable" list of foods that I should avoid besides gluten that may help. I keep reading a high fiber, whole grain diet, but yet all my new MC friends say otherwise. Getting confused.....

Also, does anyone think my allergist might be the person to go to for answers about sensitivities? Just wondering.

Romanita

[Gabes-Apg]

Romanita

TEx and quite a few of the others are the guru's on this type of thing.

From what i have seen the Enterolab tests are the most comprehensive as it provides the ranges of the reactions (tex can expand further on this)

i have done allergy testing via a naturopath and accupuncturist. they willl indicate a reaction but not to the extent of the enterolab tests with the ranges etc

[JLH]

I went to an allergist and both he and his allergist son did not have anything nice to say about stool testing. Also, my skin prick allergy tests didn't show anything.

We are all different.

[Polly]

Hi Romanita and

How nice to have another medical professional here (I am a pediatrician with MC)! You already have lots of great advice, so I'll just emphasize a few things.

The Enterolab stool tests are definitely the best way to determine food sensitivities. Skin testing for "food allergies" is generally not helpful to MCers, since the food sensitivites that go along with MC are not of the anaphylactic type - they are mediated through a different mechanism. Our sensitivities are more appropriately called "food intolerances" and show up readily on STOOL tests.

Dr. Fine's lab is certified by all appropriate state and federal licensing agencies. Some here have been able to get coverage through their health insurance for Enterolab.

I can't emphasize enough that you will have to take your health into your own hands in order to get well. Hopefully your doc will work with you, but don't expect any understanding or interest in the food intolerances that go along with MC. And the blood test that docs do for celiac disease is usually negative, even though we may have significant gluten sensitivity. Mine was negative, and I am extremely sensitive to even the tiniest amounts of gluten.

If you have been sick for 6 years, you probably have quite a bit of inflammation in your gut. Thus, you may find it helpful to take a medication like Entocort initially along with diet until you can get the MC in better control. Later, you can wean off the medication and go with diet alone. I did it without medication (Entocort was not available 10 years ago when I was diagnosed - my doc suggested prednisone, which I was NOT going to take - LOL!). It took me almost 9 months to go into remission with diet alone. I hear you about not wanting to take meds, though!

It sounds as if you have started on the path to remission, and I look forward to further chats.

Hang in there - better days are ahead.

Polly

[tex]

So the stool and genetic panel is the way to go? It will tell me if one of my parents had the gene? That would be great. If that turns out to be the case, I guess it would be safe to assume that one of my kids may become GS?

We inherit one gene from each parent, and the gene test will show what you inherited from each of your parents. It will also show which genes you had available to pass on to your kids.

I am still trying to find a good "reliable" list of foods that I should avoid besides gluten that may help. I keep reading a high fiber, whole grain diet, but yet all my new MC friends say otherwise. Getting confused.....

Doctors generally recommend a diet high in fiber for IBS, and many of them confuse IBS with MC. Fiber is contraindicated with MC, because when the gut is hypersensitive, due to the inflammation of MC, fiber tends to irritate it, and it can not only prolong a flare, but it can cause one, if the gut has not had sufficient time to heal. Many fruits and vegetables are high in fiber, and their use should be severely limited, until remission is achieved, and the gut has had time to heal. During the healing period, all fruit should be peeled, (most of the fiber is in the peel), and it should be well cooked, (overcooked - virtually cooked to mush). The same goes for vegetables - no raw fruits or vegetables, with the possible exception of bananas, (some of us can tolerate bananas, while we are healing).

Also, does anyone think my allergist might be the person to go to for answers about sensitivities? Just wondering.

You may find that your allergist knows more about food sensitivities than your GI doc, (which isn't saying much, really), but as Polly pointed out, most allergists are accustomed to dealing with histamine-mediated reactions, and they're not acquainted with digestive system issues caused by food sensitivities.

Tex