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Crohn's Disease Forum » General IBD Discussion » Gluten is the cause!!! I believe this. PLEASE READ ALL


03-30-2012, 05:23 PM   #1
maria
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Gluten is the cause!!! I believe this. PLEASE READ ALL

Hi my name is ela and I have ulcerative colitis. For years I have never felt NORMAL and always have had problems with eating. I LOVE to eat. But I have always had battles with it. I always thought the problem was fruits and Vegetables. I thought I was allergic to them. I also have alpha thalesemia. (form of sickle cell) So inturn I was always tired and "looked malnourished" My skin is so white, like a sick white. So I constantly get comments. As do my children. I have tried everthing under the sun to figure out what the heck is worng with me. Drs don't know. SO I'm determined to figure this out and I think I recently have. I'm a lover to processed foods, well pretty much any food except seafood and I talked to a nurse and she mentioned CELIAC. I also looked up that disease. I'm not a Dr but every one of those symptoms, I have. So from what I got Gluten is what blocked nutrients from our body most people can handle it but People with "suppressed immune disease" CANNOT handle or know how to use gluten and every time I put it in my body it kills the villi (sp?) the little sweeping things by our colon to our rectum that absorbes vitamins and such. So after a while we don't have it and it causes ulcers in our colon then progresses with severe ibd. And so we get the symptoms like blood,cramping, Because our colon is trying to move it along but can't because the missing or damaged Villi(sp?) Also weakness and being tired from lack of nourishments from lower colon. Also this causes gas. And for those of you that had a endoscopy, all that air being pushed in and expanding out our colon is like torure because it's just like touching open wounds.(ulcers) That possibly can't heal due to vitamin deficiancies(sp). That's why we loose hair,poor eye sight, dry scaly skin because our body is too into using what we actually get to just survive on a daily basis.
I've had a ileostomy SO I thought my body should be "cured" BUT I still have the same problems and it's getting worse again. I even bleed in my rectal stump on a daily basis and it's not even "hooked to the plumbing". I'm totally thinking that this gluten might be my (our) problem. I hope all this make sense. I always wondered why my children have dry chapped lips because they don't eat terribly bad. My children also have the immune disease or whatever sickle cell/thalesemia. No I'm not italian or african so I don't know where it came from it leaves drs stumped. So I'm trying it out leaving gluten out of my life. So far since I've had no tummy problems and acutally my bleeding is totally lighening up and I feel a whole H*** of a lot better! I'm new to this so if anyone has any info on it please share with me. I hope this helps someone out. Sometimes we have to rely on ourselves to help our bodies because Drs are just humans and don't know it all. I want at least 90 yrs out of this body god gave me. So I will fight and do what I can. Thank you for reading this.
-Carmela
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I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
Trying to stay gluten free.

Last edited by maria; 04-27-2012 at 03:28 PM.
03-30-2012, 08:17 PM   #2
mickey
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I have found eliminating grains help a great deal, as well as meat. Elimination sugars and carbonation is huge as well. I spoke to my doc today and she mentioned a study that I will find out more about next week. She said to increase my Natren Holy Trinity probiotics from 1 to 6 if necessary, but do so in small increments. She mentioned a study was done that someone is now saying will cure Crohns and colitis with higher levels of probtiotics. Not longer term, but I will find out details next week. She is the one who informed me that food is a more powerful drug that people think. When having incidents were knees got swollen from eating popcorn (to point of arthritic) and then stopped doing so when I eliminated corn, I realized she was onto something...keep researching!
03-30-2012, 08:40 PM   #3
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I am glad gluten-free is helping you! I know a lot of people with Crohn's are definitely sensitive to it. I went gluten-free 1 year ago to see if it helped, and since then I've been wrose than ever and had 4 obstructions . . . clearly it was not the answer for me. But I still think cutting down grains overall is a good idea for most people with IBD, especially since many of us can't eat whole grains anyway and have to eat processed garbage, which is good for no one.
03-30-2012, 09:05 PM   #4
Manzyb
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So from what I got Gluten is what blocked nutrients from our body most people can handle it but People with "suppressed immune disease" CANNOT handle or know how to use gluten and every time I put it in my body it kills the villi (sp?)
I thought that with Crohn's/UC that are immune systems are over active and not suppressed...unless you are obviously on immunosuppressants.

Anyway, that's not really all that important! I was just curious, I really hope this helps you out a lot! I've been doing just fruits/veggies/lean proteins and that makes my stomach hurt a lot less than when I eat processed foods. Not necessarily just gluten, but really anything that is loaded with chemicals that our bodies were not made to use.
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03-31-2012, 05:52 AM   #5
maria
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I have found eliminating grains help a great deal, as well as meat. Elimination sugars and carbonation is huge as well. I spoke to my doc today and she mentioned a study that I will find out more about next week. She said to increase my Natren Holy Trinity probiotics from 1 to 6 if necessary, but do so in small increments. She mentioned a study was done that someone is now saying will cure Crohns and colitis with higher levels of probtiotics. Not longer term, but I will find out details next week. She is the one who informed me that food is a more powerful drug that people think. When having incidents were knees got swollen from eating popcorn (to point of arthritic) and then stopped doing so when I eliminated corn, I realized she was onto something...keep researching!
Yes! That would be great. thank you..
03-31-2012, 05:56 AM   #6
maria
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I am glad gluten-free is helping you! I know a lot of people with Crohn's are definitely sensitive to it. I went gluten-free 1 year ago to see if it helped, and since then I've been wrose than ever and had 4 obstructions . . . clearly it was not the answer for me. But I still think cutting down grains overall is a good idea for most people with IBD, especially since many of us can't eat whole grains anyway and have to eat processed garbage, which is good for no one.
Thats not good. I noticed when I tried to eat really healthy thats when it all went down hill for me 4 yrs ago. So crazy how all our bodys suffer the same but So different things trigger our symptoms. I hope it's going better for you.
03-31-2012, 06:05 AM   #7
maria
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I thought that with Crohn's/UC that are immune systems are over active and not suppressed...unless you are obviously on immunosuppressants.

Anyway, that's not really all that important! I was just curious, I really hope this helps you out a lot! I've been doing just fruits/veggies/lean proteins and that makes my stomach hurt a lot less than when I eat processed foods. Not necessarily just gluten, but really anything that is loaded with chemicals that our bodies were not made to use.
I also have thalesemia not sure if that has anything to with my symptoms. I was reading stuff and just really trying to make sense of it. I can say since I've done this I have seen a major improvement on the way I feel. I have more energy and Actually my pain feels more under control Also with the way I look. I don't look as sick. I'm still learning about all this I'm just glad to finally have more understanding with the way my body is working.
03-31-2012, 06:59 PM   #8
Catherine
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Have you been to thalpal.com for thal. We have been though the thal testing with sarah as cause of anemia but now appears to have been been rule out. Within 6 weeks of being treated for c rf ohn she hemoglobin went from 90 to 115. I found thalpal very helpfully
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-31-2012, 07:55 PM   #9
GFinDC
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http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001613/

Hi,

I don't know much about Thalessemia, but I am sorry to hear you have it. I can give some advice about gluten free eating though as I hsve celiac and have been on the GF diet for 4 and 1/2 years.

First off my advice is related to how it affects celiac, so it may be different for you. For celiacs gluten means anything with wheat, rye or barley in it. Some react to oats also, so it would be good to eliminate them too.

The best way to start GF is to go with a whole foods diet. Don't eat any processed foods at all. Instead eat whole foods you prepare yourself at home. Whole foods are things like fruit, nuts, vegetables in their natural state, not canned or frozen or boxed. That includes not eating GF marked breads or cereals etc. Meats should be plain meat with no glazes or breading.

It's also a good idea to stop all dairy for the first 3 months, and all soy.

You should also get rid of your old toaster and any wooden bowls or utensils. You could sand wooden items real well and re-oil them but it probably isn't worth the effort. Wood is porus and can absorb gluten so just washing it isn't enough.

Colander's need to be replaced. Stainless steel pots and pans can be scrubbed well with steel wool and boiled with soapy water for a 1/2 hour or so. Plastic is usually best replaced.

If you are sharing your kitchen with gluten eaters you need to have separate gluten free versions of things like peanut butter, mayo etc and mark them as GF. And no sharing them.

When you do buy frozen foods look for ones with only one, 2 or 3 ingredients, like "lima beans, water, salt". That would be a good ingredient list, 3 items or less and all of them actual food, not chemicals.

If you are in the USA you can get Mission brand corn tortillas which are made on dedicated GF lines to use instead of bread. They are cheap and work fine if you warm them up a bit so they fold without cracking.

It's also good to be aware that some people have a period of intense cravings for gluten foods after going gluten free. This generally will pass after staying strictly GF for a while.

The first 6 weeks can be unsettled and it may help to avoid sugar during this time. Also taking probiotics and digestive enzymes may help.
During this starting phase you would not at out in restaraunts at all. It is best to take food with you when you go out.

Elimination diet

It is not unusual for people with celiac to develop other food intolerances and a good way to find those is with an elimination diet. An elimination diet is when you start with a small number of foods, often 5, and then slowly add foods one at a time. You would start with eating your group of 5 foods for a week or two. Then if you feel better add one new food for 3 days and see how it affects you. If it is bad you mark it off the list of possible foods.

A starting group of 5 foods is something each person needs to choose for themselves. A possible group could be lamb (for protein), salt, black pepper, sweet potatoes, avocados. Notice that spices are considered individually as well. vitamins pills and medicines are also eliminated as well as coffee, tea, beer wine etc. Anything you eat or drink or consume has to be considered a possible problem.

Your starting group should only include foods that you think are ok for you. Lamb is often recommended as the meat because most people don't eat it often. You should not choose any of the top 8 allergens which are:

soy, eggs, fish, shellfish, wheat, dairy, peanuts, tree nuts

In addition it would be good not to choose any of the common additional food problems for celiacs such as:

corn, nightshades (tomatoes, peppers, potatoes, eggplant), legumes (beans).

But everyone is different so these food intolerances need to be tested by each person.

Some other problems that people can have with foods are fructose malabsorbtion, salicylate sensitivity, casein sensitive enteropathy, and lectin intolerance. I don't know much about those though.
__________________
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Celiac disease, (not Crohn's), thyroid cyst and nodules, Lactose / casein intolerant. My current bad list is: gluten (wheat, barley rye and oats), dairy, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, nightshades (tomatoes, peppers, potatoes), alcohol, and hard work. have a good day! :-) Paul
04-02-2012, 03:20 AM   #10
maria
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http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001613/

Hi,

I don't know much about Thalessemia, but I am sorry to hear you have it. I can give some advice about gluten free eating though as I hsve celiac and have been on the GF diet for 4 and 1/2 years.

First off my advice is related to how it affects celiac, so it may be different for you. For celiacs gluten means anything with wheat, rye or barley in it. Some react to oats also, so it would be good to eliminate them too.

The best way to start GF is to go with a whole foods diet. Don't eat any processed foods at all. Instead eat whole foods you prepare yourself at home. Whole foods are things like fruit, nuts, vegetables in their natural state, not canned or frozen or boxed. That includes not eating GF marked breads or cereals etc. Meats should be plain meat with no glazes or breading.

It's also a good idea to stop all dairy for the first 3 months, and all soy.

You should also get rid of your old toaster and any wooden bowls or utensils. You could sand wooden items real well and re-oil them but it probably isn't worth the effort. Wood is porus and can absorb gluten so just washing it isn't enough.

Colander's need to be replaced. Stainless steel pots and pans can be scrubbed well with steel wool and boiled with soapy water for a 1/2 hour or so. Plastic is usually best replaced.

If you are sharing your kitchen with gluten eaters you need to have separate gluten free versions of things like peanut butter, mayo etc and mark them as GF. And no sharing them.

When you do buy frozen foods look for ones with only one, 2 or 3 ingredients, like "lima beans, water, salt". That would be a good ingredient list, 3 items or less and all of them actual food, not chemicals.

If you are in the USA you can get Mission brand corn tortillas which are made on dedicated GF lines to use instead of bread. They are cheap and work fine if you warm them up a bit so they fold without cracking.

It's also good to be aware that some people have a period of intense cravings for gluten foods after going gluten free. This generally will pass after staying strictly GF for a while.

The first 6 weeks can be unsettled and it may help to avoid sugar during this time. Also taking probiotics and digestive enzymes may help.
During this starting phase you would not at out in restaraunts at all. It is best to take food with you when you go out.

Elimination diet

It is not unusual for people with celiac to develop other food intolerances and a good way to find those is with an elimination diet. An elimination diet is when you start with a small number of foods, often 5, and then slowly add foods one at a time. You would start with eating your group of 5 foods for a week or two. Then if you feel better add one new food for 3 days and see how it affects you. If it is bad you mark it off the list of possible foods.

A starting group of 5 foods is something each person needs to choose for themselves. A possible group could be lamb (for protein), salt, black pepper, sweet potatoes, avocados. Notice that spices are considered individually as well. vitamins pills and medicines are also eliminated as well as coffee, tea, beer wine etc. Anything you eat or drink or consume has to be considered a possible problem.

Your starting group should only include foods that you think are ok for you. Lamb is often recommended as the meat because most people don't eat it often. You should not choose any of the top 8 allergens which are:

soy, eggs, fish, shellfish, wheat, dairy, peanuts, tree nuts

In addition it would be good not to choose any of the common additional food problems for celiacs such as:

corn, nightshades (tomatoes, peppers, potatoes, eggplant), legumes (beans).

But everyone is different so these food intolerances need to be tested by each person.

Some other problems that people can have with foods are fructose malabsorbtion, salicylate sensitivity, casein sensitive enteropathy, and lectin intolerance. I don't know much about those though.
Thank you!!! This information is like gold to me. I was having such strong, STRONG cravings today..I didn't know about the utensils. I didn't even think about that.. I'm getting new ones asap. Lately I've had so much more energy and as the days go on I feel way better. So it's totally worth it to me.
04-02-2012, 03:22 AM   #11
maria
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Have you been to thalpal.com for thal. We have been though the thal testing with sarah as cause of anemia but now appears to have been been rule out. Within 6 weeks of being treated for c rf ohn she hemoglobin went from 90 to 115. I found thalpal very helpfully
I'm gonna check it out. It would be nice to hear from others with this..Thank you.
04-02-2012, 03:37 AM   #12
maria
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Have you been to thalpal.com for thal. We have been though the thal testing with sarah as cause of anemia but now appears to have been been rule out. Within 6 weeks of being treated for c rf ohn she hemoglobin went from 90 to 115. I found thalpal very helpfully
I joined it. Just waiting to be approved. Thank you
04-02-2012, 05:45 PM   #13
Catherine
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04-02-2012, 05:52 PM   #14
Josephine
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Personal I think that maybe Gluten trigger of Crohns in people but it being hide until decide hide no more.
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04-02-2012, 06:00 PM   #15
Josephine
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Celiac disease run like olive branch on the Irish side but Great Aunt Daughter who in her 40s as just being she has it. GI and GP said that she was born with it.
So what not Crohns?

Last edited by Josephine; 04-07-2012 at 04:18 PM.
04-07-2012, 01:00 AM   #16
maria
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i am catherinem on thalpal.
ill look you up...
04-07-2012, 01:07 AM   #17
maria
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I just want to say that I feel a night and day difference since I've eliminated the gluten. The more time goes on I feel even better.I've noticed my hair is way softer now too not sure if that has anything to do with it. 3x more energy for me. Today I went to trader joes and they have a Huge selection of Gluten free foods SO I went wild and got so much stuff. Just happy I know this before I get my j-pouch
04-07-2012, 02:32 AM   #18
Leebie3
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@manzyb.. recent research has shown that IBD is caused by a deficient immune system :-) which is the total opposite to what they have always believed. lol goes to show they are learning new things all the time.

Hope you continue to feel well on your gluten free diet Maria!! xoxo
04-10-2012, 05:07 PM   #19
maria
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Look what WAS ON MY YAHOO NEWS today






Day in Health

by Lisa Collier Cool


Recent Posts



The Top 10 Fat-Blasting Foods


Germs: Myths and Facts


Surprising Facts About Fat


More Articles »




Miley Cyrus recently joined Gwyneth Paltrow, Oprah Winfrey, Zooey Deschanel and millions of other Americans in jumping on the gluten-free diet bandwagon.

“For everyone calling me anorexic I have a gluten and lactose allergy. It’s not about weight it’s about health. Gluten is crappp anyway,” the singer/actress told her Twitter fans on Monday after photos surfaced of her looking thin.

23 Diet Plans Reviewed: Do They Work?

An Epidemic of Gluten Intolerance

Studies show that exposure to gluten—a protein found in barley, wheat, rye, as well as everyday products (including some brands of lipstick, vitamins and lip balms) is making more people sick than ever before.

A recent study using frozen blood samples taken from Air Force recruits found that celiac disease—a chronic autoimmune disorder triggered by gluten—is five times more common today than it was in the 1950s. Another recent report shows that rates of this debilitating digestive disorder have doubled every 15 years since 1974.

And for every person with celiac disease, researchers estimate that at least six to seven others suffer from gluten sensitivity, a milder condition. The soaring rates have sparked hot medical debate about why more and more Americans are now reacting to foods they used to eat with no problem.

7 Common Myths of Dieting

A Misunderstood Malady

Although Cyrus considers herself “allergic” to gluten, medically speaking, there’s no such thing as gluten allergy. Contrary to popular belief, celiac disease and its close relative, gluten intolerance (also called gluten sensitivity) are not food allergies.

Instead, they are autoimmune conditions in which the body treats undigested gluten protein like a foreign invader. Emerging research is beginning to better differentiate celiac disease and gluten intolerance, now thought to be a spectrum of disorders that spark such symptoms as bloating, belly pain, gassiness, constipation, nausea, and in many cases--including Cyrus’--lactose intolerance.

The Top 10 Fat-Blasting Foods

Often Undiagnosed for Up to 10 Years

Recent estimates suggest that about 6 percent of Americans suffer from gluten sensitivity—and many of them go undiagnosed for ten or more years. That’s because symptoms can vary from person to person, with some people experiencing non-intestinal maladies like fatigue, headaches, mental fog, and even bone or joint pain.

When people with the disease eat foods that contain gluten, a damaging reaction occurs in the lining of the small intestine, blocking its ability to absorb certain nutrients. This can lead to vitamin deficiencies and malnutrition, even if the person is eating a seemingly healthy diet.

Best Strategies for Maintaining Long-Term Weight Loss

Potentially Serious Complications

Because celiac disease robs the body of vital nutrients, people who have it are at increased risk for anemia and osteoporosis. People who have celiac disease and don’t eat a gluten-free diet also face a higher threat of bowel cancer and intestinal lymphoma.

The Air Force Base study found that during 45 years of follow-up, those with undiagnosed celiac disease were four times more likely to die than were people whose disease was diagnosed and properly treated.

The Best Gluten-Free Products You've Never Heard Of

Why Are Rates Rising?

One theory is that today’s grain-based foods contain more gluten than they did in the past. Another is that kids are exposed to gluten at an earlier age, contributing to increased risk.

A frequently proposed explanation is the “hygiene hypothesis,” the theory that we are too clean for our own good, resulting in weaker immune systems because we’re not exposed to as many diseases during childhood.

Does a Gluten-Free Diet Promote Weight Loss?

While Cyrus attributes her weight loss to going gluten-free, and Oprah has also tried that diet, it’s not necessarily a fat-burning miracle. Many gluten-free foods are actually higher in calories than their gluten-containing counterparts and therefore lead to weight gain, reports Christina Tennyson, MD of the Celiac Disease Center at Columbia University in New York City.

“One of the pitfalls is that these foods are often highly processed and high in fat. Some ingredients that are used are low in fiber, such as white rice flour, tapioca and corn starch, causing constipation,” Dr. Tennyson says. To avoid these problems, people with celiac disease should work with a nutritionist, she advises.

What’s the Treatment for Gluten Intolerance?

Although there’s no cure, symptoms can be effectively controlled through dietary changes to avoid all foods with gluten. However, if you think you might have celiac disease or gluten intolerance, don’t start a gluten-free diet until you’ve been tested for the condition, since eliminating gluten can cause misleading test results, cautions Dr. Tennyson.

Because the disease can also spark vitamin and mineral deficiencies, patients may also need supplements. For people with severe small intestine inflammation, doctors sometimes prescribe steroids.

Does a Gluten-Free Diet Have Any Health Benefits If You don’t Have an Intolerance?

Possibly. In a randomized study in which neither the researchers nor the participants knew if the foods they were eating contained gluten or not, 68 percent of people who thought that a gluten-free diet improved their GI symptoms reported worsening of their symptoms when they were fed gluten-containing foods without their knowledge.

However, the study only looked at 34 patients. Use of gluten-free diets for other conditions, such as autism, is highly controversial










Gosh I wish I knew about this sooner....
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