Has a GF or MI diet failed you?

[harvest_table]

Hi friends,

I was wondering if there are any members out there who gave a GF diet (with no medication) a worthy try and you saw no improvement in your symptoms.

Also, if it did not help you, did you go on further to eliminate other things like dairy, soy, ect and still noticed no relief?

If you fall into this catagory, and gave up on diet what are you doing now to manage your MC? Appreciate hearing your experiences.

Thanks,
Joanna

[mle_ii]

Well, that wasn't me, but given what I've learned thus far I can see how this could happen. Even though the diet would help these same folks sometimes it takes more than just a diet change to get on the path towards healing.

[cludwig]

Hi Joanna,

Unfortunately, I guess that's me. I am starting my eighth month gf and dairy,yeast soy egg free and my seventh grain free. I am on my second round of Entocort..one round before diet and one after. I am feeling less ill than I was six months ago and believe that not eating any of my intolerances is the key to long term recovery for me. My D symptoms were never as severe as all of yours but it just keeps hanging around. I head to the Mayo Clinic Dec 5, so maybe I'll get some answers there. If any of you have any ideas about what you think I should ask to have checked please pass them on to me. Any ideas would be great.

Love,
Cristi

[m]

Joanna,
I've had success with a gluten free, egg free, corn free, soy free, yeast free, diary free diet. I adopted all except corn from the beginning after I kept careful log of how I felt each day and what I ate. I also had took some of Dr. Fines' tests but the proof was really in how I felt. I've had flare ups but no continuous symptoms. No I can't say for sure whether I would have gotten better eventually without the diet or not and I'm too afraid of feeling horrible again that I don't "test the waters." And when I need medication, I ask for it.
m

[harvest_table]

Hi PP friends,

Mike, I agree, sometimes it takes more than dietary choices. Looking back, in my situation having lived with chronic D, muscle and joint pain, fatique and depression for a couple of years before my DX I just needed relief and medications along with dieting did the trick in the long haul. I often wonder if I had only begun a GF or MI diet at the onset without meds if I would be where I'm at in my recovery today. I REALLY doubt it.

Cristi, I wish things were more clean cut for you. You are having to deal with other health issues that may have preceeded an MC DX and that makes it so much more complicated to wade through your options and find a solution. MC seems to be sort of a free range disease. I'm hoping that you will find total recovery with your diet eventually. Since your going to Mayo, we need help you get a checklist of questions to ask your GI for sure, and soon.

Melissa, I didn't realize you were on such a MI diet and glad to hear it's doing well for you. I have not had Dr. Fines tests done, just with trial and error with my body and have mangaged to figured that out after a couple years time. What meds do you take if your having problems?

Thanks again for your responses. We learn from each other.

Love,
Joanna

[MaggieRedwings]

Hi Johanna,

I went GF at the start of this 5 years ago ? and also since have gone raw veggie and fruit free, soy free, nightshade free, mostly egg free, being vegan I am dairy free with the except of a piece of cheese now and then, citrus free and God know what else free. Also no medications. I am so much better than I was in the beginning but I am by no means how I would like to be. Mornings are still a real trial and late at nights but I no long do the bathroom boogies 40+ times per day and am down to about 10. For that I am thankful and must say better.

Love, Maggie

[harvest_table]

I went GF at the start of this 5 years ago ? and also since have gone raw veggie and fruit free, soy free, nightshade free, mostly egg free, being vegan I am dairy free with the except of a piece of cheese now and then, citrus free and God know what else free. Also no medications. I am so much better than I was in the beginning but I am by no means how I would like to be.

Hi Maggie,

Since your Vegan, with MC and numerous food intolerences, do you think your getting enough protein in your diet? What are you eating for protein?

After 5 years of a strict diet do you still have D, 10 times a day? In general how are you feeling healthwise? Have you ever considered medication? It worked for me.

Love,
Joanna

[Jean]

I only took asocol for 2-3 weeks and it did nothing for me. I started the diet and after finding all of my intolerances; gluten, dairy, corn, soy and rice, I have been symptom free for three years.

Love, Jean

[MaggieRedwings]

Morning Joanna,

I have resorted to eating some tuna and salmon for protein. Not my choice but definitely the doctor's. After 5 years I still have the D and have learned to live with it. Since I am now taking Toprol for heart and Lipitor for cholesterol and not liking the world of meds, I will not add back any of the ones I took for this disease that did me no good at all.

I feel good most of the time but do get tired and I am sure the heart problem causes that - the meds cause drowsiness. I have also seemed to pick up 3 lbs. I cannot shed - old age I guess - and for the most part seem good.

Love, Maggie

[harvest_table]

I only took asocol for 2-3 weeks and it did nothing for me. I started the diet and after finding all of my intolerances; gluten, dairy, corn, soy and rice, I have been symptom free for three years.

Hi Jean,

Asacol make me so sick, as well as the next couple meds I tried after that. It wasn't until I used Pred and Entocort that I found any relief at all. I'm so thankful to be living symptom free with diet alone now, like you and many others here.

Still very curious to see if anyone out there has really seriously tried dieting with no luck.


Maggie,

I certainly can understand your reluctance to add another med to the list your already taking daily. Somehow, we all just manage to adapt and learn to live with this disease one way or another. Hey, 3 pounds is no biggie is it?

Thanks everyone for your input.

Love,
Joanna

[bobh]

...Still very curious to see if anyone out there has really seriously tried dieting with no luck.
...Love, Joanna

Ah, well that would be me, Bob H.
I would LOVE to be one of the successful dieters, like Jean, Mathew, and others that have been absolutely dedicated to a non-med healing. I tried for 2 years - as best I could - to strictly avoid wheat after my Dr. Fine diagnosis (avoiding the "usual suspects" where wheat is used in various condiments, etc, etc.)

I simply did not get better, at all. My genetic profile (posted on this site a couple months ago when everyone was comparing inherited traits for celiac) say that I have the celiac gene from both parents, I had the antibodies to wheat in the test result, etc. I have a twin brother, he likely has the same genetic issues but has never had an issue with wheat, or "D" or any digestive problem at all (we are both 50 years old).

Anyway, back to your question, I strictly followed a GF diet, went through several nutritionists, spent $2,000 apiece as we did elimination diets living on the non-allergic powders made by Metagenics (largely rice based - in violation of Paleo or SCD theories) as well as the Thorne labs elimination diet. LATER I found this site, and Jean's excellent elimination diet, which may have been more successful, and less $$.

But basically, I would eliminate all dairy, wheat, eggs, coffee, etc. and live on sawdust for a couple weeks, then "introduce" things to see what caused a reaction. The problem was, the symptoms NEVER GOT BETTER so there was no way to tell what was making it worse as it was introduced.

Then in July 2006 I went onto a strict "no grains, no sugars" diet (the "Specific Carbo Diet" per the book "Breaking the Vicious Cycle", by Gotchal). I really, really wanted it to work. It had helped so many people with worse conditions than I have (Crohn's disease, and Ulcerative Colitis). After 6 strict weeks, I just felt zero improvement. Her book says if you don't see improvement after 30 days, "then this diet isn't for you". I was at the end of my rope, and considering meds.

As mentioned in my "honeymoon" posting on this site (15 years MC, should I consider meds?) I really, really wanted to stop the "explosive - pressurized paint D" that had plagued me for 15 years. I had chronic fatigue for 20 years. After all your input, I tried Asacol by itself with no result at all in 2 weeks. Went back to my MD, we did a SHORT but HARD hit with 60 mg Prednisone for 2 days, then tapering to none within about 10 days. Every 2 days we reduced the Prednisone dose, when it got to 20 mg a day we introduced Entocort. So there was another 2 days where the Prednisone was down to just 10 mg a day (with 2 Entocort). Then it was ONLY the Entocort - which of course is an "anti-inflamatory steroid" targeted to the bowels with it's delayed release. Safer than a long term use of Prednisone.

I started that protocol September 5th 2006, and the NEXT MORNING had a formed stool. I transitioned to "2 entocort a day, 3 if needed". So far, 2 Entocort a day has kept me free of "D" completely, for over 2 1/2 months. I can tell that if I stopped the meds, the "D" would come back, as there are occasional "flare ups" where my colon has that all-too-familiar irritated-inflamed feeling coming on, but NEVER flares enough to cause a truly loose stool. And typically I have one BM within an hour of waking, it is formed, and I have no attention on finding a toilet for the rest of the day.

It has been a night and day difference.

Again, I would have to assume that I have not been as "good" or "vigilant" as some of the "diet only" people who are enjoying remissions. But really, really, I just think I would be screwed without the meds. I briefly tried to add back in a low dose of Prednisone to get help with some widespread inflammatory conditions in the rest of the body - but quit that after 3 days due to side effect of feeling a bit "manic". I am just on the 2 Entocort a day, and tapered off the Asacol recently with no worsening of symptoms. The Entocort does it for me.

Knowing my body, if I ever had a bad flare up again, I would increase the Entocort. If that didn't work, I would ask my MD for another short, fast, hard hit with Prednisone (about 60 mg) to knock out the fire, quickly lowering the dose and passing the torch to 3 Entocort, then down to 2 a day.

For the winning dieters, this may sound like a crutch, but it keeps me from making "strange but true" noises in the bathroom stall next to yours in the restaurant.

PS: I got a new job, went out to eat last week with the new boss and my wife, to a PIZZA PLACE of his choosing. I decided to do a WHEAT CHALLENGE. This was a super-health food type pizza place, with no nitrates, etc, but TONS OF WHOLE WHEAT. I ate a moderately large amount of pizza - and had previously been avoiding wheat for several years. THERE WAS NO REACTION WHATSOEVER. None. You could say that the Entocort created an artificial world, where my reactions were masked, but diet alone never gave me a remission.

I DO NOT plan on eating wheat as part of my normal diet, given my genetic type, and fact that my body appears to create antibodies to gluten. Why create an allergic battlefield? But - I mention this as it seems to reinforce my response to your initial query about diet, symptom relief, etc.

[tex]

Bob,

Thank you for the update, and all the useful information. I think I can safely say that you have managed to change the way that many of us think about treating this disease. I would be surprised if all those who have found relief of symptoms by diet alone, will warm up to your approach, but I personally feel that it's definitely an option that should be considered, especially in those extreme cases where relief remains elusive, dispite an extended and dedicated effort to gain control by diet alone.

In this game, the primary goal is to achieve remission, and get one's life back. After that, one can fine tune his or her lifestyle in any way desired. It's much easier to fine tune the details when you're feeling more normal, and not running to the throne every few minutes.

I realize that you're not planning on being a guinea pig on this issue, but one thing that I have always wondered, is whether or not someone who is gluten sensitive, continues to release antibodies to gluten, even though his or her symptoms are being controlled by an anti-inflammatory med, such as a corticosteroid. Presumably, antibodies would be detectable in a stool test up to a year after the last ingestion of gluten, (and therefore they would probably be detectable for a year after initiating the use of meds), since this is true of someone who cuts gluten out of the diet, but I wonder if it would be true, (after roughly a year), of someone who achieves and maintains control by meds, but continues to ingest gluten, even if on an occasional basis.

For gluten sensitive individuals, who choose to continue to ingest gluten, because a med program allows them to remain symptom free, that information would probably offer a valuable clue as to whether or not there would be a continued risk of further intestinal damage, additional autoimmune issues, or a continued elevated risk of certain serious issues, such as lymphoma, which untreated, or assymptomatic celiacs face.

Congratulations on the new job, and your continued success with Entocort. And thanks for continuing to share your helpful insights with us. Obviously, this is how we continue to learn new things about this disease.

Tex

[bobh]

...one thing that I have always wondered, is whether or not someone who is gluten sensitive, continues to release antibodies to gluten, even though his or her symptoms are being controlled by an anti-inflammatory med, such as a corticosteroid.

Yeah, those are some good issues to resolve. If I wasn't in debt up to my eyeballs I would do another lab test for gluten antibodies - perhaps I will do that up the road and post the results here. It may be more meaningful after I have been on the meds longer (not yet 3 months so far).

...For gluten sensitive individuals, who choose to continue to ingest gluten, because a med program allows them to remain symptom free, that information would probably offer a valuable clue as to whether or not there would be a continued risk of further intestinal damage...

Well - I did a single meal "challenge" of wheat, but would never include it as a routine part of my diet. I really shouldn't have done the "challenge", but it is interesting that it didn't worsen my symptoms.

I will abstain from gluten as much as possible, due to my genetic issues. Even for non-celiacs, like my wife, she avoids wheat because a nutritionist told her it was "inflammatory" and her joints feel better when she avoids it. So it's easy if we both avoid it.

In closing - you are right, life is a lot better without running to the throne. The month before going on meds, I had a few "accidents" where I couldn't run fast enough - and that is really not acceptable. I am thankful that I live in this century, where the meds are available. And for this group, providing needed info for the MC condition.

[artteacher]

Hi Bob,
I am so glad you posted. I'm one of the MI's and have a long list of foods groups that I don't eat. I also have had lupus (I think in remission), and Hashimoto's thyroiditis (autoimmune hypothyroidism), so I have autoimmune issues besides the MC (which my doctor says is no longer in evidence, either). That is due to my diet, I'm sure. I always wondered why my digestive problems didn't improve when I was on prednisone, but perhaps it's because the 20 mg I was on wasn't high enough, at least initially.
I'm going to be tested for adrenal and pituatary problems in January, and one of the drugs used to treat would be cortisone. So your description of your doctor's protocol has been really helpful. It's given me a lot to think about.
I hope you keep posting: you have a lot to offer. And even though cortisone is a drug to take only after knowing all the side effects, it's still a valid option that everyone should know about.

I am so glad you've been doing well. Thanks, again . . Marsha

[bobh]

I always wondered why my digestive problems didn't improve when I was on prednisone, but perhaps it's because the 20 mg I was on wasn't high enough, at least initially... Marsha

Yeah, I'm not medically trained, but all I can say is that when we started with 60mg Prednisone, it was like "euphoria". All the inflammatory conditions throughout the entire body STOPPED. The brain fog went away, the aching joints, all of it cleared up. I did feel "buzzy" and toward the end of the protocol I felt a bit "manic". But it cleared my inflammatory bowels pronto. My med info was posted here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794

Again, I really wish I could have achieved remission with diet alone. Aside from the "wheat challenge" I did last week, I continue to avoid wheat and all processed foods (the additives turn me into a zombie).