Gluten free (or former) dieters?
#356023 - 02/22/10 07:58 AM
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Cyndy
Reged: 03/05/05
Posts: 1301
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How many of you have tried or are currently eating gluten free? How did it help or not help, if that be the case. Just curious. Thanks,
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Gluten free is not likely to help much unless you have celiac disease. If you are concerned about this you might ask your doctor for a blood test. If the test is positive then you likely need to have a endoscopy to take a biopsy to confirm the findings.
One of the primary foods that is eliminated in celiac disease is wheat because of its gluten content. However, there is a fair amount of research to show the some components in wheat other than gluten can exacerbate IBS symptoms. You might try restricting your consumption of wheat to about the equivalent amount of two thin slices of bread per day and see if that works for you.
-------------------- STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Problem
#356029 - 02/22/10 10:13 AM
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Cyndy
Reged: 03/05/05
Posts: 1301
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What is two out of three of the blood tests are positive for gluten antibodies, but the biopsy is normal? So, while I probably don't have celiac, do I still need to abstain form gluten?
Thanks much, Syl.
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Re: Problem
#356033 - 02/22/10 11:13 AM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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A biopsy is the gold standard test. I guess there are a couple of reason you had a positive blood test and a negative biopsy. Perhaps the blood test produced false positive results, the biopsy was misinterpreted or too few biopsy pieces being taken. It something you should talk to your doctor about to get a clearer understanding of what to do.
-------------------- STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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well, it came back this way 3 times in a row.
Plus, three different doctors told me three different things. Some say it's okay to eat gluten, another said to eat gluten free, and the third told me it was up to me to decide.
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Re: Problem
#356035 - 02/22/10 11:25 AM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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However, you say the biopsy came back negative which is the most definitive test. Of course the biopsy could be negative if you were following a gluten free diet before the biopsy was taken.
Apparently, the blood test can produce false positive results for a variety of reasons including other autoimmune disorders and type I diabetes. It something you should discuss with your doctor.
-------------------- STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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I wasn't following a GF diet before the biopsy.
Interesting about the the positive results due to other autoimmune disorders. Would that include having a poor immune system?
I talk with doctors about this but they all tell me different things, seriously. They are clueless and have told me so.
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I tried it for 2 weeks once... it was hard to tell if it helped anything.
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HI Cyndy! You could definitely be gluten intolerant, but maybe not have "celiac disease"
-------------------- FancyMom
IBS-A,Constipation predominant, GERD
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I just read "Healthier without Wheat" by an IBS doc here in Seattle and he discusses this gluten intolerance vs. celiac....basically you can be gluten intolerant but not have celiac disease. I tried not eating wheat for about a month and i think it helped (even though my tests came back negative).
-------------------- IBS-D since 2008, female in her 20s
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Cindy, I am not a expert and still have lot to learn. I'm just a 62 year mother of a daughter with Down Syndrome, who has been in stomach pain for the past 5 years. We have been seeing GI doctors for 5 years and none of them indicated that my daughter had Gluten Intolerants up until this past Oct. when we were testing for allergies and the Dr. could not find anything she was allergic to that would cause her problems. He even put her on allergy medicines for 2 week thinking it would be something in the air but it made no difference. She still was in stomach pain. Then he took a blood test and called me to his office indicating that my daughter was Gluten Intolerants and that she need to see a Rheumatology, which we are still working on because of her insurance. We tired the IBS diet for 2 years and if helped her some but the pain was still there just not as bad. We had 3 biopsy and none for her GI doctors found anything. We also had 5 blood test for Celica Diease with 3 difference doctors all indicated she didn't have Celica Diease. Of the 3 test that each doctor did there was always 1 of them very high, but the doctors said that could be becasue she's down syndrome. She immune system was also low and she is always anemic, but they said that most down syndrome are anemic. Anyway we have started the Gluten Diet since Oct. and it has made a difference. She is in pain sometimes, but it usually because something she has eating has gluten. And for some reason since she has been on the gluten free diet her pains are worse now when she does eat gluten then what they were before. I think that since it was in her system all the time before it was causing her a steady problem and now that she's been off of the gluten it's worse now that its not in her system anymore. I still have a lot to learn about the Gluten Diet and I also still use the IBS diet too without Gluten. But 2 weeks after being on the Gluten diet it was like day and night. I went to pick her up a camp and for the 1st time in 5 years she didn't tell me her stomach hurt. I didn't say anything thinking that maybe this was just one day but No still till this day that I pick her up from camp she has not said her stomach hurts, unless she has eating something at camp with gluten it. We're not free yet of stomace pain but it's a lot better than it has been for 5 years and I am very greatful for the allergist that put us on the gluten free diet. After the blood test that the allergist did I sent a copy to her New GI doctor indicating that the allergist was going to put her on a gluten free diet and what did he think of the blood test. He words were he did not think there was anything in the test that would indicate she was Gluten intolerant. As for now I will keep her on the Gluten Free Diet because it has helped her a great Deal. I also like the IBS Diet Too, but right now we are ust Gluten Free and it's working. Thank God This may not help, but I just wanted to give you my side of the story and how many years we have been working with Drs. to find something wrong with my daughter. I knew she was in pain, it was just hard for the Doctors to find out what kind of pain she was in. We really could not get a good picture from her in so many words as to were and now she was hurting, but I as her mother knew she was in pain. She is laughing a lot more now then she has been in the last 5 years. Thanks for listening, eva, mother of an angle that is not in so much pain now.
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Thanks to everyone who took the time to respond. It seems that you all had different experiences...both negative and positive.
I don't know what to do. I sure which a doctor could tell me for sure what to do. I was gonna try eating gluten again, but now I'm sort of scared. I fear it is worsening my C but helping other symptoms? I don't know. Before I started eating GF I had D....but now I have the complete opposite problem to the point that I need to take Miralax. I don't know what to do
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Thanks fancymom. Do you follow a GF diet? If you do, how did you find out you were intolerant to gluten?
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Do you eat gluten other than wheat?
Just curious as to why you started eating gluten again if you think it helped you.
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I am happy for your daughter. I wish eating GF took away all my symptoms. It's a difficut and expensive diet to maintain and I don't know if I'm doing it for nothing!
Thanks for sharing your story
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thanks. So you stopped following it after 2 weeks? It is extremely difficult to know if it helps or not. I wish I had a vast difference so I would know for sure.
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Yes, after 2 weeks, I didn't feel there was enough of a difference, if any at all, to continue.
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Cindy, Yes it's difficult & expensive, but so is IBS until you find out what you can eat and what to look for. You start off slow and take your time. There is a lot of help out there just like this wonderful web sight. I think the only real thing I find expensive is the bread but in time I hope to learn to make my own. It's trial and arrow and there will be some gluten item you will not like and there will be some that are very good. And as far as your C, I think you just need to eat the right kind of food just like IBS the soluble & Insoluble in order to help your system. We are also still on the Benifiber and Fennel tea which I think helps also. There are several web sights out there that help and livingwithout.com has some recipes to help you get started, and little by little you'll learn what's gluten free. But if you start off with natural foods, vegetables and fruits, just like IBS, thats a great start there. Also there are lots of things that are coming out with Gluten free. I can tell you we do miss the good breads and pastas but we have learned to leave without it for now, only because I haven't found a good pasta that I like yet that's gluten free. But rice and potatoes are great. I wish you the best of luck. I for one know it's not easy to get the Doctors to listen and take the time to try and find out what's wrong. IBS is a good start as long as you stay away from the breads and pastas. Just think Fresh foods. Good Luck and God Bless, eva
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