Gluten
- Thread starter Soohie
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Oct 16, 2013
- Messages
- 12,137
I go to a holistic chiropractor. He tested me. It seems as I go further along, there are more foods that aggravate the Crohn's Disease. I had a nutritionist who told me once you can do all the right things and still have a day where you still have problems with the Crohn's.
I have wondered myself about food intolerance but am inclined to believe its nothing to do with that x obv we have foods that make us more likely to have symptoms etc but not the direct xcasue of the disease x I am trying to cut out the main contenders like onions and gas producing veg as I know these hurt me but I am not elimanting food groups until I get advised to by a surgrein or a nurse and I haven't been told anything yet other than what I just wrote x
- Joined
- Apr 19, 2011
- Messages
- 1,400
Gluten is the current fad. People don't seem to be happy unless they are being "active" about their diets. There is a simple test for celiac disease and it is the gold standard. Get an endoscope and you will know. Is it possible some people feel better when they exclude it? Absolutely - it could also be other components in what they are eating however. too many people tinker and use their anecdotal information as a general case for a population. For many of us, going vegan means big troubles for instance. I literally could not survive on a vegan diet. Gluten containing foods are very important in my diet and will remain so. I think Eleanor has good points - there are foods that can aggravate and it makes sense to reduce those while keeping as full a diet as you can.
- Joined
- Oct 16, 2013
- Messages
- 12,137
I am not vegan but I have found that if vegetables aren't cooked fully I can't tolerate them.
- Joined
- Nov 8, 2011
- Messages
- 20
I was just looking at this earlier today and I have the "chicken" skin on my arms that "they" say is linked to gluten intolerance. I don't think i've ever had an issue with gluten. Maybe i'll have to get a test for celiac ? I guess I just don't know the difference between celiac disease and gluten intolerance. Any thoughts? :shifty::ysmile:
- Joined
- Oct 13, 2015
- Messages
- 17
Basically, anyone who starts a sentence "have you tried..." unless they have CD gets a
"talk to the hand" response. This is not a simple bellyache and they usually have no idea. It's like MS or Lupus, not a "stomach bug."
This said, I've done SCD, which is basically a grainfree diet - it helped me SOME. It did not resolve my flare on its own. For some people it does. Just like some people go into remission on a med while others won't. Dietarily, if it doesn't mess you up, it might be worth some experimentation, for sure, but don't let anyone treat you like your solution is simple to a problem so complicated we haven't figured out a cure.
"talk to the hand" response. This is not a simple bellyache and they usually have no idea. It's like MS or Lupus, not a "stomach bug."
This said, I've done SCD, which is basically a grainfree diet - it helped me SOME. It did not resolve my flare on its own. For some people it does. Just like some people go into remission on a med while others won't. Dietarily, if it doesn't mess you up, it might be worth some experimentation, for sure, but don't let anyone treat you like your solution is simple to a problem so complicated we haven't figured out a cure.
- Joined
- Mar 26, 2011
- Messages
- 256
I second the above... people that has no idea what Crohns is tend to treat it like a stomach flu. Some is out of lack of knowledge and awareness, misconceptions, etc. and some is from not being able to accept that there sickness in this world and not everything is under our control.
People that dont know, many times cannot or dont want to accept. It's much easier to through this back on the one who are suffering saying it's their fault and only if they would eat dairy free gluten free veg diet, add some himalia goat milk un pasturized or adopt their friend diet who "has what we have" we would fix ourselves with no meds.
Dont even listen to this crap. Crohns is a serious disease with possible complications and should be treated accordingly.
Only you know your body and can determine if a certain food is bad for you; elimination is the best way since there is no proven diet that showed benefit in Crohns up till no in any research, other than exclusive elemental nutrition, and only with pediatric Crohns, not adults.
Listen to yourself, and come here to the forum to discuss with others who knows this disease first hand. Don't mind what others say, it's mostly irrelevant if you are educated enough by reading on the forum and reliable resources.
Feel well
People that dont know, many times cannot or dont want to accept. It's much easier to through this back on the one who are suffering saying it's their fault and only if they would eat dairy free gluten free veg diet, add some himalia goat milk un pasturized or adopt their friend diet who "has what we have" we would fix ourselves with no meds.
Dont even listen to this crap. Crohns is a serious disease with possible complications and should be treated accordingly.
Only you know your body and can determine if a certain food is bad for you; elimination is the best way since there is no proven diet that showed benefit in Crohns up till no in any research, other than exclusive elemental nutrition, and only with pediatric Crohns, not adults.
Listen to yourself, and come here to the forum to discuss with others who knows this disease first hand. Don't mind what others say, it's mostly irrelevant if you are educated enough by reading on the forum and reliable resources.
Feel well
- Joined
- Oct 16, 2013
- Messages
- 12,137
Anen
Soohie and kms0387,
It is possible to have an Inflammatory Bowel Disease such as Crohn's or UC and have celiac disease or gluten sensitivity. All three conditions share many of the same symptoms; however they are all diagnosed differently.
This is a link that describes Celiac disease and how it can be diagnosed:http://www.celiaccentral.org/Celiac-Disease/21/
If you scroll down the left side of the page you will also find info about Gluten Sensitivity.
One important thing to note is that if celiac disease is suspected, it is important to continue to eat gluten until testing is completed; otherwise, the damage done to the villi in the small intestine may heal and the result will be a false negative and, if you continue to eat gluten you could become very ill, including developing intestinal lymphoma.
At the moment there is no testing for gluten intolerance--it is a diagnosis of exclusion, meaning that after testing for diseases with known pathology like IBD and celiac disease and after becoming symptom-free on a gluten-free diet, the diagnosis of gluten sensitivity can be made.
it is important to note that a person can test negative for celiac disease and then years later test positive.
I follow a gluten-free diet after having used formula to induce remission of my IBD, followed by an elimination or exclusion diet. I tested negative for celiac years before, and the test was repeated when I was really ill, but I had not been eating any food and therefore no gluten at that time.So, I am not certain if I have celiac disease in addition to IBD, or just gluten sensitivity; however, I maintain a strict GF diet, so it no longer matters which it is as the treatment is the same.
I am otherwise digestively symptom-free, so I know when I have been 'glutened'--within 24-48 hours I develop cramping, diarrhea, swollen lymph nodes around my joints, swollen fingers, swollen shins and I get very mentally foggy, especially with math skills, spatial skills (like parking the car!), memory and word finding skills. It now takes 36-72 hours to recover when it used to take me three weeks.
Last comment--there are many hidden sources of gluten--for celiacs even 'a little bit' can cause damage to the small intestine. For those with gluten sensitivity, the amount a person can tolerate depends on their symptoms. I prepare most of my own meals in my own gluten-free kitchen, so I don't have to worry about cross-contamination with gluten in toasters, on bread boards, in colanders, in the jam, the pasta water, etc. I have the most trouble when I try to eat out.
May you have much luck in deciding if gluten is a problem for you.
It is possible to have an Inflammatory Bowel Disease such as Crohn's or UC and have celiac disease or gluten sensitivity. All three conditions share many of the same symptoms; however they are all diagnosed differently.
This is a link that describes Celiac disease and how it can be diagnosed:http://www.celiaccentral.org/Celiac-Disease/21/
If you scroll down the left side of the page you will also find info about Gluten Sensitivity.
One important thing to note is that if celiac disease is suspected, it is important to continue to eat gluten until testing is completed; otherwise, the damage done to the villi in the small intestine may heal and the result will be a false negative and, if you continue to eat gluten you could become very ill, including developing intestinal lymphoma.
At the moment there is no testing for gluten intolerance--it is a diagnosis of exclusion, meaning that after testing for diseases with known pathology like IBD and celiac disease and after becoming symptom-free on a gluten-free diet, the diagnosis of gluten sensitivity can be made.
it is important to note that a person can test negative for celiac disease and then years later test positive.
I follow a gluten-free diet after having used formula to induce remission of my IBD, followed by an elimination or exclusion diet. I tested negative for celiac years before, and the test was repeated when I was really ill, but I had not been eating any food and therefore no gluten at that time.So, I am not certain if I have celiac disease in addition to IBD, or just gluten sensitivity; however, I maintain a strict GF diet, so it no longer matters which it is as the treatment is the same.
I am otherwise digestively symptom-free, so I know when I have been 'glutened'--within 24-48 hours I develop cramping, diarrhea, swollen lymph nodes around my joints, swollen fingers, swollen shins and I get very mentally foggy, especially with math skills, spatial skills (like parking the car!), memory and word finding skills. It now takes 36-72 hours to recover when it used to take me three weeks.
Last comment--there are many hidden sources of gluten--for celiacs even 'a little bit' can cause damage to the small intestine. For those with gluten sensitivity, the amount a person can tolerate depends on their symptoms. I prepare most of my own meals in my own gluten-free kitchen, so I don't have to worry about cross-contamination with gluten in toasters, on bread boards, in colanders, in the jam, the pasta water, etc. I have the most trouble when I try to eat out.
May you have much luck in deciding if gluten is a problem for you.
Wheat allergy is completely different from celiac disease or gluten sensitivity--a reaction to wheat can cause an immediate anaphylactic reaction that could potentially cause death.
Here is a link to really good info about wheat allergy and the difference between that and celiac disease: http://acaai.org/allergies/types/food-allergies/types-food-allergy/wheat-gluten-allergy
Here is a link to really good info about wheat allergy and the difference between that and celiac disease: http://acaai.org/allergies/types/food-allergies/types-food-allergy/wheat-gluten-allergy
Finally, here is a link to a terrific Webinar about celiac disease, gluten sensitivity and wheat allergy: http://limelightdc.com/clientarea/naspghan_gluten_webinar_06_13/player_page.html
You can also scroll down the page to view the slides that go with the webinar.
You can also scroll down the page to view the slides that go with the webinar.
- Joined
- Nov 9, 2014
- Messages
- 431
I noticed a huge improvement when I went gluten free, but later I had to go grain free as well. A few days ago I tried some corn/rice pasta and it was the worst decision of the month. I just don't know whether it's the corn upsetting my immune system or also rice, which would not make things easier. I thought this grain free thing would be temporary but it's slowly getting a long term diet for me, not very happy about that.
- Joined
- Apr 15, 2012
- Messages
- 14,728
I would suspect corn over the rice
Since corn gives more issues for most
Harder to digest and a starch.
Since corn gives more issues for most
Harder to digest and a starch.
- Joined
- Nov 9, 2014
- Messages
- 431
Thank you, my little penguin! That's what I guess as well, so when I feel better, rice pasta could be worth a try but I can't have rice, it just comes out the way I swallow it and even hurts when it passes my terminal ileum. I can't imagine rice being too hard to digest for me or being too rough on the surface but triggering an immune reaction if I really can't have it. But I will try it again with pure rice pasta.
- Joined
- Apr 15, 2012
- Messages
- 14,728
DS uses the partial enteral nutrition with crohns exclusive diet
Lots of dos and donts
He can't handle brown rice pasta
But has no issue with white rice pasta
So far he has had success with pasterio brand.
Link to the specifics of the diet his Gi put him on
http://www.crohnsforum.com/showthread.php?t=71686
He still has issues with some of the allowed foods ( ie chicken but can handle turkey breasts instead )
Lots of dos and donts
He can't handle brown rice pasta
But has no issue with white rice pasta
So far he has had success with pasterio brand.
Link to the specifics of the diet his Gi put him on
http://www.crohnsforum.com/showthread.php?t=71686
He still has issues with some of the allowed foods ( ie chicken but can handle turkey breasts instead )
Charlotte,
I am also sensitive to the corn protein, so I cannot eat fresh corn or corn meal (corn flour). However I can eat corn starch as is does not contain the protein. There is a company that makes pasta with white rice and quinoa (http://gogoquinoa.com/product/quinoa-spaghetti/) and one that makes pasta with legumes (http://www.tolerantfoods.com/#!product-list/c18gl)
I am also sensitive to oats, including 'pure' or 'GF' oats-- I use buckwheat or quinoa flakes instead.
I am also sensitive to the corn protein, so I cannot eat fresh corn or corn meal (corn flour). However I can eat corn starch as is does not contain the protein. There is a company that makes pasta with white rice and quinoa (http://gogoquinoa.com/product/quinoa-spaghetti/) and one that makes pasta with legumes (http://www.tolerantfoods.com/#!product-list/c18gl)
I am also sensitive to oats, including 'pure' or 'GF' oats-- I use buckwheat or quinoa flakes instead.
- Joined
- Nov 9, 2014
- Messages
- 431
Hi happy,
Thank you for sharing your experience! I will try with pure rice pasta from the Asian food store, they only contain rice flour and water, nothing else.
I tried buckwheat flour, oat flour and whole quinoa but I did not tolerate it well, especially not the whole quinoa, what a surprise. ;-)
So rice is the last grain that I would try, if it's not working for me, I think, I'm done with grains for while.
Thank you ronroush7! I will check that out when I see that pure rice is fine as a flour.
Thank you for sharing your experience! I will try with pure rice pasta from the Asian food store, they only contain rice flour and water, nothing else.
I tried buckwheat flour, oat flour and whole quinoa but I did not tolerate it well, especially not the whole quinoa, what a surprise. ;-)
So rice is the last grain that I would try, if it's not working for me, I think, I'm done with grains for while.
Thank you ronroush7! I will check that out when I see that pure rice is fine as a flour.
