Crohn's and Celiac/Gluten free

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MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 6/30/2009 8:31 PM (GMT -6)   
I am asking for words of wisdom from people who have gone through this. I really need your help!
So I have really been debating going on a gluten free diet. My mom has been bugging me to NO END about it! I have had the blood test done and it came back negative(so i am supposed to be in the clear for Gluten) I was diagnosed in December 08 and have been on Pentaza and Entocourt. I was taken off my entocourt then put back on because my symptoms got worse. I recently started Remicade, I have had 2 infusions. (I know its still early to REALLY be feeling my best yet) So I am currently on Pentaza, Entocourt and Remicade...My big issue is I am still having some symptoms. My Doctors keep saying "Eat whatever you want" But I have cut out "heavy milk products" I opt for Soy Yogurt and Soy Milk on my cereal in the morning and have been buying more Organic items. From many of my"friends of friends with a brother who has Crohns" they have taken Gluten out and it seems to be the only thing that works...
So if my Dr. is saying, eat whatever and I am still saying "Ouch! and Oh No!"...as I rush to the restroom, what am I to do? I have a feeling I already have my answer but need the guts and support to suck it up and take the plunge.....
23yr old Female. Diagnosed December of 2008 after 2.5 years of CD symptoms. 
Currently on Pentaza 2pills 4X daily.  Also a Multi-vitamin. Recently put BACK on Entocourt...
Started Remicade 6/1/09, Two treatments in, praying I continue to feel better.
Multiple back problems that are worse when flairs...Deteriorating disks, Scoliosis, and Arthritis.
Looking forward to my wedding in July. I have a wondeful supportive family and fiance!


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/30/2009 9:29 PM (GMT -6)   
most doctors ignore any link of anything to diet, especially when it is gastrointestinal and would rather instead push pills cos that is what they get paid to do.

even if you do not have gluten sensitivities via bloodwork, it does not mean that you cannot benefit from trying a gluten free diet. i dont know about you, but knowing what i know now, i'd rather opt for dietary changes than take a pill and hope for the best and deal with the side effects. sure taking a pill is way easier and making dietary changes is difficult, but once you get used to it and begin to feel the benefit, you'll stick to it and it becomes easy because it is a habit. this can take several months though...

dont do soy. seriously, it is not a health food. Soybeans have been cleverly disguised as health foods and wrongly championed by the health industry as the near perfect food. As tragic as it may sound, if you take a good look at the research you will find that soybeans really are not that good for you. For starters soybeans are the number one genetically modified (GMO) crop in America. Roundup Ready soybeans have been genetically modified to include the herbicide Roundup in the actual soybean itself. Soybeans are high in phytates, which prevent the absorption of minerals. Soybeans contain natural toxins called “anti-nutrients” which are essentially enzyme inhibitors. Many research studies have linked soybeans to a long list of problems, including impaired thyroid and immune system functions, reproductive disorders, impeding the sexual maturation of boys while accelerating that of girls, promotion of kidney stones, and even cancer and heart disease. Soy milk is actually a waste product from the tofu making process. Someone figured out that if this waste product is processed some more with added ingredients they can sell it as a milk substitute. Soybeans are marketed to you at Japanese restaurants as edamame. The Asian culture, particularly the Japanese, can live just fine on soybeans since they have been doing so for generation upon generation whereas the rest of us have not. Plus they eat a much healthier diet that includes more vegetables, and they generally eat fermented versions of soy (tempeh, miso, natto, and tamari) that negates most if not all of the negative effects of soy. The unfermented version of soy is the one to stay away from. Unfortunately it is the unfermented version you will find in tofu, soy milk, soy protein isolates, soy ice cream, soybean oil, and many, many other soy derivative food products. And steer clear of hydrolyzed soy protein, which is a common ingredient in imitation foods.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/30/2009 11:58 PM (GMT -6)   
Taking out gluten is easier than you might think. I've gone the extra step and eat SCD (no gluten, starch, sugar, or lactose). I even think SCD is pretty easy to follow. You've got nothing to lose by trying it. Good luck!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/1/2009 12:05 AM (GMT -6)   
Doctors are going by old research that studied high vs low fiber diets. They found no benefits from that kind of diet modification and so diets don't work as far as they're concerned. Of course, no researcher is going to risk their credibility by doing a trial of the SCD - that's just some amateur hokum diet. So diets don't do anything - unless you listen to the dozens of people on forums like this who have had good results from diet modifications. Then there are dietitians. The one I talked to was trying to get me to add lots of fiber to my diet. If I hadn't had a bunch of experience with the stuff that she was pushing, I might have tried it and been left wondering why the diet didn't help. When you get "experts" feeding you wrong information, you really have to have guts (no pun intended) to go against them, or to even think that they must be wrong.
/end of rant

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/1/2009 6:15 AM (GMT -6)   
You have nothing to lose trying it and everything to gain, yes?
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/1/2009 6:26 AM (GMT -6)   
Give it a try! I should probably do the same.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 7/1/2009 7:46 AM (GMT -6)   
Thanks for all the support guys! Harry, I can not BELIEVE all of that information about Soy! Regular milk gives me D in the morning. So I was thinking soy would be a good choice but I guess not! Thanks for the links Kiwi! I will need to check them out when I have a bit more time.
You guys have helped to push me to switch my diet. I WILL do this! Thanks again!

:)
23yr old Female. Diagnosed December of 2008 after 2.5 years of CD symptoms. 
Currently on Pentaza 2pills 4X daily.  Also a Multi-vitamin. Recently put BACK on Entocourt...
Started Remicade 6/1/09, Two treatments in, praying I continue to feel better.
Multiple back problems that are worse when flairs...Deteriorating disks, Scoliosis, and Arthritis.
Looking forward to my wedding in July. I have a wondeful supportive family and fiance!


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/1/2009 7:58 AM (GMT -6)   
Just another vote here for the SCD! My son's GI team also told him to eat whatever he wanted. After that, it was not fun convincing him that maybe this diet thing was worth a try, but we moms are persistent! smilewinkgrin Thankfully, he gave it 100% and is in remission.

The mere fact that so many cookbooks have been written that are compliant with the diet says a lot to me. Here is a link with the top selling cookbooks for the SCD. I have "Eat Well, Feel Well" and "Recipes for the Specific Carbohydrate Diet" and I love them both!

http://www.lucyskitchenshop.com/cookbook.html

There are also lots of online sites for the SCD, too. Spooky, do you have those? Also, the book that explains the diet is called "Breaking the Vicious Cycle" by Elaine Gottschall.

Lastly, I agree with CrazyHarry on the soy issue. I've read the information he's read and gave it up completely except for the real, fermented stuff on occasion.

Good luck to you and keep us posted!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 7/1/2009 8:24 AM (GMT -6)   
Mer I just wanted to let you know I too tried the soy route and ended up regretting it, the soy products gave me really bad cramps.

I personally live on a low residue diet and that works well for me. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 7/1/2009 6:16 PM (GMT -6)   
What neat information I gain from you guys! Thanks Kiwi!

I have decided to start my new diet in a few weeks. I am getting married in 3 weeks from Saturday and dont have the time or energy to invest in it fully right now. I dont want to "just avoid Gluten" cause I want to really see what this new diet does! And obviously a mostly gluten free diet isnt gluten free at all! :P

In the mean time...should I throw out all of my Soy Yogurt and Milk and just wait to heal or whats your advice? I am able to eat frozen yogurt at night with a small amount of issues but Milk in the morning is a BAD idea!

Thanks for this wealth of new information!
23yr old Female. Diagnosed December of 2008 after 2.5 years of CD symptoms. 
Currently on Pentaza 2pills 4X daily.  Also a Multi-vitamin. Recently put BACK on Entocourt...
Started Remicade 6/1/09, Two treatments in, praying I continue to feel better.
Multiple back problems that are worse when flairs...Deteriorating disks, Scoliosis, and Arthritis.
Looking forward to my wedding in July. I have a wondeful supportive family and fiance!


AMinNJ
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 7/1/2009 8:10 PM (GMT -6)   
Congratulations on your upcoming wedding!

I went gluten free and dairy free immediately after my diagnosis, and I've never taken any medication. I felt a lot of improvement in just two weeks. Proctitis and rectal symptoms completely resolved in about 2 months, and my terminal ileum pain is (knock wood) barely noticeable now, about 6 months into diet. I also take supplements (see my signature) which may have helped as well.

I wish you luck!
Angela, age 43
dx Ulcerative Proctitis 2008 after colonoscopy
dx Crohn's 2009 after small capsule endoscopy
Symptoms on and off for more than 10 years
Currently taking no medications
Gluten-free, dairy-free, low sugar diet
VSL/probiotics, MorEPA, B Vitamins, Folic acid, Vit C, Vit D, Turmeric, Ginger, Selenium, Mushroom


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/1/2009 9:43 PM (GMT -6)   
kiwikiwi,

that is very interesting that you say after going gluten free that the body can begin again digesting lactose. i was told by my first GI that like 99% of people with CD are lactose intolerant (it sure would have been nice of him to tell me when i was diagnosed instead of letting me figure out on my own for like 6 agonizing months!). so if i interpret what you said correctly, by going gluten free for some time you let the micro villi in the small bowel rebuild itself so the body can, with enough time, begin again to digest milk. it makes sense from the standpoint that (using the research presented in the scd) that with active disease, induced by a heavy processed food grain/gluten diet the micro villi are smooth, small and in worst cases virtually non existent. so if the micro villi are able to heal by a gluten free diet then the body would, to varying degrees, return to its proper working order.

thinking out loud without doing any research on that particular subject, my professional opinion would be perhaps. the body is amazing at healing itself, but it is normal to lose the ability to digest lactose to varying degrees as we grow up (we are the only species to drink milk past infancy). this fact alone makes me a little suspect on what you said, not that it cannot be true. that is an interesting point that i hope some one here knows more about cos i'll admit that right now i am too lazy to research this.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/1/2009 10:54 PM (GMT -6)   
MerJ2009 said...
In the mean time...should I throw out all of my Soy Yogurt and Milk and just wait to heal or whats your advice? I am able to eat frozen yogurt at night with a small amount of issues but Milk in the morning is a BAD idea!


Mer, maybe it's helpful to know that the ONLY dairy allowed on the SCD is home made yogurt (virtually lactose-free due to the 24 hour fermentation process) and aged, hard cheeses. Aged cheeses are also virtually lactose-free. Gottschall seemed to feel it was extremely important to give up all dairy with lactose.

Congratulations on your upcoming marriage! Also, I noticed you have scoliosis. I do too--quite severe. I just want to share that I have found that a high quality fish oil (omega 3s--a natural anti-inflammatory) like cod liver oil or krill oil is really helpful for the inevitable arthritis and disc issues that always accompany it. I take at least 3000 mg a day. Fish oil has also been shown in studies to be beneficial for Crohn's as well, so you might want to give it a try! I strongly recommend choosing a well respected, high quality brand though, and gradually increasing your dosage starting at 1000 mg.

Have a WONDERFUL wedding!!! :-)
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 429
   Posted 7/2/2009 10:13 AM (GMT -6)   
When I couldn't get approved for Humira, I stopped eating wheat, but didn't worry about the gluten presence in foods since I'm sure I do not have a gluten sensitivity. For a while I was wheat free, dairy free, corn syrup free, and did not eat a lot of vegetables or fruit I couldn't digest well.

The not eating wheat made a HUGE difference. I was eventually able to tolerate more sugars and fruits and vegetables, and even dairy. I am now on Humira, which has undoubtedly helped as well, and wheat (well plus bad stuff like corn syrup, though I do slip up sometimes) is the only thing that remains out of my diet.

I think for me my issues derived from the fiber matrix of the bread--I can tolerate fried foods (even though I shouldn't...) because the fiber matrix is broken down, but plain old bread would do a number on my intestines. I'm considering going on a strictly gluten-free diet, however I don't know if there will be additional benefits for me. I'm totally fine living without bread, but having to worry about eating out, my food touching gluten, various salad dressings etc. seems like unnecessary stress.

Overall, going wheat or gluten free will make you eat healthier by default. I can't just pick up any old thing and eat it, so I'm much more conscious of my choices.
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.

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