cutting out gluten--what is your experience?

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yogaprof
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Date Joined Apr 2006
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   Posted 1/11/2008 1:33 PM (GMT -7)   
rather than let this turn into an issue of testing or "natural" vs. "scientific" medicine, I would like to hear about those of you who, even though not found to have celiac disease, have stopped eating gluten. I know this topic has been discussed before, but like everything else (remicade, humira, etc etc) I don't pay attention until it falls in my lap.
 
I am going to give it a try for a month and see how I feel. I have been on every medication and had every test over and over. I seem to have a mild case of crohns, but have serious pain that has been constant for 2 years that hasn't been helped by any of the meds. It is worth a shot.
thanks, yp

Post Edited (yogaprof) : 1/11/2008 1:40:46 PM (GMT-7)


Rufus T Firefly
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Date Joined Sep 2004
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   Posted 1/11/2008 2:54 PM (GMT -7)   
I quit gluten a couple of years ago.  My folks said that I had celiac when I was a little kid.  Apparently, feeding me a gluten free diet was too much trouble and they didn't stick with it.  I didn't give it much thought until my cycle of infections got to be unbearable, (peri-anal fistulae/abcess thing) so I quit gluten out of desperation.  It made a big difference in the severity and depth of my infectious activity.  I don't know for certain that I have been able to avoid gluten 100%, because it can lurk hidden in a lot of foods, or rather "food products"; I still have severe Crohn's symptoms, but I feel that cutting out gluten has enabled me to gain a measure of control. 
 
One byproduct of a gluten free diet is that you also end up eliminating a lof other harmful additives that tend to show up in unhealthy pre-packaged foods.  I read every label on every can or box.  If it lists gluten, it also likely lists a lot of other stabilizers and chemical agents that do nothing for you, nutritionally, and are actually harmful.  I tend to cook most of my own meals, from scratch- nothing boxed or prepared.  I eat whole fresh foods.  It's very hard work to eliminate gluten, but I can recommend it.   As time goes by, you will find yourself eating healthier foods not just because they are gluten free, but because processed foods taste so terrible and make you feel crappy. 
"Sometimes even a picnic is no picnic...."  G B Shaw


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 1/11/2008 3:00 PM (GMT -7)   
I don't have anything to add, but just wanted to send good wishes that you find some relief. Good Luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


praying4healing
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Date Joined Dec 2007
Total Posts : 739
   Posted 1/11/2008 4:05 PM (GMT -7)   
im glad u posed this quetion, im interested in reading the responses. I too have been curious about this gluten free thing. I wonder , is it common for someone with crohns to be tested for celiacs? I was 14, and literally near death, when i was diagnosed, so i dont know what i was tested for, i know im not lactose intolerant but thats about it.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 1/11/2008 5:51 PM (GMT -7)   
Yogaprof, I also posted under your other topic. I have heard other CD patients say that cutting out gluten helps their CD. The reason for that is not known I don't think but it does seem to me that an intestinal lining that is inflamed is probably not working properly. It may allow protein into the blood stream at a stage that doesn't happen in a normal intestine (this may not be technically correct but that is how it was explained to me) So the immune system recognizes it as something different and forms IGG antibody against it. There are different forms of antibodies. The ones that kill, like allergy to seafood and peanut, are IGE. They are the ones that can cause reactions like airway swelling, hives, drop in blood pressure etc. IGG antibodies are different and their role with food sensitivities are not fully understood or accepted by mainstream medicine. Another term for it is "leaky gut syndrome"

My gi NP told me that you can have "gluten sensitivity or intolerance" without having celiac disease so that is one mainstream practice that believes in this.

Like I said in my other post, what have you got to lose? Maybe it will work and you may never know why but does it matter?

I think there is a brand of soy sauce that doesn't have wheat in it but I'm not positive. I know there is a brand of Worcesorshire (sp?) sauce that doesn't. Also, if you really don't have celiac you don't have to be as strict as you normally would be although its probably best to follow the diet as much as possible for it to be a true test. I use gluten free and wheat free interchangably but technically it is wheat I have a problem with, as well as rye and all related grains. It is actually dairy products I miss most as well as eggs.

I did lose weight when I went on my diet and that is a problem but I also have diabetes so I have to keep my carbs under control and that does limit caloric intake. No muffins, no bagels, no cakes, no cookies I also miss pizza terribly, although Amy's makes a decent gluten free, dairy free spinach pizza. If you like to cook (I don't) you may want to get into gluten free baking. There are some excellent books on it.

Gluten and casein are also possibly part of autism. This is also controversial but I know someone who tried with their child and the results were amazing.

Good luck! You can do it. If it doesn't work then gluten will still be there to eat again.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


john's girl
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 1/12/2008 6:49 PM (GMT -7)   
My doctors thought I had celiac at first, so I was out on a gluten-free diet for two months to see if it helped my symptoms. I was a freshman in college at the time, so navigating the dining hall was a living hell! Turns out that I have Crohn's, not celiac, but cutting out gluten was pretty difficult. If you're living on your own and able to buy your own food and everything I'm sure it's easier.

Good Luck!

mibiks
Regular Member


Date Joined Jan 2004
Total Posts : 26
   Posted 1/12/2008 11:46 PM (GMT -7)   
I had bad food poisoning 8 years ago. Since then I have been diagnosed then undiagnosed as having Crohn's and then diagnosed with non-specific colitis. But, I have shown upper and lower digestive system ulcerations in the past. Anyway, three things greatly helped me recover when I was really sick. By process of elimination I found that wheat gluten was a big problem. I have not eaten wheat in 8 years. I have tested negative for Celiac multiple times. Pro-biotics also seemed to have a huge positive effect. And last but not least, NO CAFFEINE. Caffeine causes problems within minutes of taking it in. That includes chocolate. sad

Post Edited (mibiks) : 1/13/2008 11:44:30 AM (GMT-7)


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 1/13/2008 11:16 AM (GMT -7)   
i feel way better. i rarely eat grains now but when i do i look for sprouted first, gluten free second. if it doesnt meet these requirements, then chances are i'll skip it. every once in a while i cheat (burritos are hard to pass up, especially after surfing) but i'll skip as much of the tortilla as possible and i always take digestive enzymes with my meals. i think that helps a lot. this is hard at first, but becomes easier as you adjust. there are much more gluten free products available nowadays. you just have to shop at health food stores.
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


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/14/2008 8:25 AM (GMT -7)   
chas, does this diet have anything to do with gluten? I am glad it has worked for you.
I appreciate all of your stories. keep em coming! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 1/14/2008 9:00 AM (GMT -7)   
yogaprof said...
chas, does this diet have anything to do with gluten? I am glad it has worked for you.


Hi yogaprof, I'm jumping in... "Breaking the Vicious Cycle" is by Elaine Gottschall, also author of the Specific Carbohydrate Diet (SCD). There is a lot of info online about her story and the diet. Although it's not advertised as such, it is a gluten free diet. Here's a quote from the website:

"One basic principle of the SCD™ diet must be firmly established and persistently repeated: no food should be ingested that contains carbohydrates other than those found in fruits, honey, properly prepared yogurt, and those vegetables and nuts listed."

Hope this helps!
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/14/2008 10:53 PM (GMT -7)   
The SCD diet is based upon what was the original diet used to treat Celiac's disease. It goes beyond being gluten-free to eliminating all grains.
 
The author of Breaking the Vicious Cycle (SCD diet) suspected that Celiac's were being undertreated after doctors came up with the gluten-free diet.
 
It was her opinion that when people with Celiac's continued to present symptoms even after being on a gluten-free diet, it was because they should have stuck to the original grain-free diet.   

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/15/2008 9:41 AM (GMT -7)   
It is interesting to read about the SCD, but I am not ready to start anything new--just cutting out gluten is enough for me to deal with. my biggest problem with it is finding enough calories. it seems all the gluten-free stuff is also low fat. any ideas out there; the last thing I need is to lose more weight!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 1/15/2008 10:24 AM (GMT -7)   

The alternative grains, rice etc has as many calories as gluten products do.   There are plenty of desserts like puddings, rice pudding, etc. Pamela brand is a good cookie. Expensive but good.  Paul Newman's Dairy Free, Wheat Free Oreo like cookies are great. My husband likes them better than regular oreos.  I'm not sure if you can have barley and oats which are restricted  on a "gluten free" diet. Like I said before, I only watch wheat, rye and other some other forms of wheat.  

It is going to take a little while until you get into this. It will feel ackward until you do. I don't give it much thought any more and I also restrict dairy, corn syrup and eggs.  Not to say I don't feel deprived sometimes, like at parties or at work when they start bringing out the holiday goodies.  


10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/15/2008 12:03 PM (GMT -7)   
Hi yogaprof, i was just trying to make the basis of the SCD diet a little clearer.
 
That said, I hope gluten-free does the trick for you! It is definitely a benefit to be able to be on a less restrictive diet, if it can do the job. 

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/15/2008 1:30 PM (GMT -7)   
no worries njmom, I really do like the info. who knows what I will try next!
Root, I am finding my calorie problem is because I tend to grab cookies at work, or samples in the bakery, and I think I did more of it than I realized, so i need to find alternatives. I really appreciate your advice.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


schoolgirl
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 1/15/2008 1:43 PM (GMT -7)   
Yogaprof - I'm a celiac and crohn's so not really the experiment person you are looking for, but I can give you a little gluten-free information.
 
You don't have to eat carb-free to eat gluten_free if you are willing to spend the money on the products.  Most health food stores and a lot of major grocery chains are now carrying many gluten free products in their health food section.  You can get cold cereal, cookies, crackers, cake and cookie mixes, brownies - haven't found a brownie mix yet I don't like, pretzels, breakfast bars, pasta - some of it is good and some of it is not, so be careful.  Another good option is Blue Diamond Nut Thins made from almonds, hazelnut, pecan - although I don't know if they sell them everywhere.  And there's always potatoes and rice. There are many online stores for gluten-free products and mixes too if you decide to stick with the diet.
 
I've been gluten-free for 5 years because I have celiac and you can find it in the strangest places.  Fortunately a new labeling law passed in 2006 has helped tremendously.  The only thing not required to be listed on US labels is barley malt, but many products are putting it there anyway.
 
Trying the diet for a month is a good idea.  As a celiac they have you try for at least 3 weeks to see if it makes a difference. 
 
As we know though, high-carb is not good for crohn's and I can attest to that from experience.  I think people assume gluten-free is cutting out all the grains/starches, but it doesn't have to be, so be careful.  Also, the gluten-free products are much higher in calories and often low in fiber.
 
That said, cooking low fat, low carb and whole foods for myself is what makes me feel the best.
 
It will be interesting to hear your results after a month - good luck!
Becky
Dx with Crohn's Aug 2007; celiac sprue July 2003; Type II diabetes Nov 2006.  Current meds: Entocort , Asacol, Levoxyl, Fosomax, various vitamin supplements.


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 1/15/2008 4:03 PM (GMT -7)   
YP, One of the last times I was in the hospital, my roommate was a CDer with Celiac. Since I was suppose to be clear liquid but I was dying, she gave me a few of her pretzels. They were pretty good. Also, one of my book club friends goes gluten free so for Xmas I give every one a fruit filled bread. For her, I used a gluten free bread mix. I was a little hard to work with, but it tasted good. It looked a bit funny too. But taste is more important. So my little experience with gluten free is that it tastes pretty good.

I'll be interested in your result. I hope it works for you and you finally get some relief. Lord knows you deserve it after all you have been through!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Driver37
Regular Member


Date Joined Jun 2007
Total Posts : 93
   Posted 1/15/2008 5:18 PM (GMT -7)   
Isn't gluten in just about everything? For someone who travels for a living I think it would be difficult to maintain this diet.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/15/2008 9:40 PM (GMT -7)   
it hasn't been that hard so far. you can eat meat, potatoes, rice, veggies, fruits--restaurants are harder, but I am figuring it out.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 1/15/2008 10:03 PM (GMT -7)   
Yes, it is hard traveling on a restrictive diet. I pack a lot of my own food. It is a pain traveling by air with the new restrictions on liquids.

A meal on the road for me might consist of a small can of tuna (the foil packs are great and don't have to be drained, they also seem like better quality tuna) 2 rice cakes, some canned fruit ( making sure it has either regular sugar in it, not corn syrup, or packed in fruit juice) and something sweet for dessert. Sometimes I use potato chips as my starch. Sometimes I treat myself to fast food french fries and those places also have salads. Sometimes I get a plain one and add my tuna to it.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/15/2008 10:07 PM (GMT -7)   
about travel - my daughter is gluten-free so we ordered a special gluten-free meal for her in advance of taking a flight on Continental Airlines. It was fantastic!!
 
I got the regular airplane "meal": chips, a brownie, pizza, lettuce (nothing else in the salad).
 
SHE got the good stuff: a hot meal with chicken breast on rice plus cooked vegies, salad with more than just lettuce, a big fat "Jenny's" macaroon and fresh fruit. 
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