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Embarrassing Question


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#1 New_To_This

 
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Posted 08 July 2011 - 06:52 PM

I have an embarrassing question to ask all those who are not celiac but eat gluten free because of a family member. I find that if I go out with friends now and have a pizza or something with wheat in it, I get severe gas. And I mean severe! Not an few minor farts, but long ones every minute or so, and this lasts for hours after eating gluten. If I hold it in, I end up with cramps. This is accompanied by bloating as well. Is this normal? I have had to ask to eat "same" foods and my friends say, you don't have to eat that way, your husbands not here. Is this a side affect of being of glutens and then going back on them? I used to get gas like this on donut fridays at work. To the point I was in severe pain from holding it back. I always thought it was the sugar and bread from the krispy cremes, now I'm not so sure. When I passed on the donuts on Fridays I seemed fine most of the time. Am I a silent sufferer because I don't get the other symptoms that so many celiacs show?
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#2 cyberprof

 
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Posted 08 July 2011 - 09:57 PM

I have an embarrassing question to ask all those who are not celiac but eat gluten free because of a family member. I find that if I go out with friends now and have a pizza or something with wheat in it, I get severe gas. And I mean severe! Not an few minor farts, but long ones every minute or so, and this lasts for hours after eating gluten. If I hold it in, I end up with cramps. This is accompanied by bloating as well. Is this normal? I have had to ask to eat "same" foods and my friends say, you don't have to eat that way, your husbands not here. Is this a side affect of being of glutens and then going back on them? I used to get gas like this on donut fridays at work. To the point I was in severe pain from holding it back. I always thought it was the sugar and bread from the krispy cremes, now I'm not so sure. When I passed on the donuts on Fridays I seemed fine most of the time. Am I a silent sufferer because I don't get the other symptoms that so many celiacs show?


Well, fortunately or unfortunately I think you are a potential celiac or at the least are gluten intolerant. Your body is telling you that it does not like gluten. From what I understand, once you go gluten free, you get more sensitive and what your body was able to tolerate becomes intolerable. I used to get terrible gas, bloating and cramps from Krispy Cremes and I thought it was the grease.

You may have other symptoms that go away if you totally eliminate gluten.

At least you know how to manage the diet, right? Good luck!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#3 domesticactivist

 
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Posted 09 July 2011 - 12:38 AM

I used to think fat was what did it. Boy, was I wrong! Now I eat way more fat without any problem. I actually haven't dared try eating gluten on purpose since Christmas. At the time we'd been "gluten-free" for about a month, but I'd been cheating and eating other grains and getting cc'd. We've been extremely vigilant ever since the new year. Part of me wants to try it just to see what would happen. We ate at my mom's last week. My son wasn't there so I thought I'd try eating someone else's cooking. We had salmon, salad, and strawberries - all things I eat at home, except the fish was farmed, the fruit not organic, and the red pepper on the fish was a powdered thing. (would have declined had I known it wasn't actually red pepper!) of course all utensils and cookware were cc'd. But it took over three days for my digestion to return to normal. I felt a lot like I did before the diet, and
not in a good way.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#4 a1956chill

 
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Posted 09 July 2011 - 02:03 AM

I would suggest going totally gluten free. Sounds as if you could be celiac or at the very least gluten intolerant.

Being gluten lite would effect any type of testing so some of your choices are :

go back on gluten fully (the equivalent 3 to 4 slices of bread daily for 3 months) so you can be tested,

or have genetic testing done to see if you have the celiac gene

or go totally gluten free without official testing.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#5 ravenwoodglass

 
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Posted 09 July 2011 - 04:28 AM

It does sound like you have an issue with gluten. If someone doesn't have problems they wouldn't get symptoms when they consume it after having been gluten free. You could do the 3 month gluten challenge and then test but your body is really giving you the answer and you would still have up to a 30% chance of a false negative. As far as gene testing goes that can sometimes just add to the confusion. There are folks that have one of the 2 most common celiac associated genes and never develop celiac and there are diagnosed celiacs that don't have one of those two celiac associated genes. Gene testing can be part of the picture but it is not diagnostic. Your reaction to gluten, however, is.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Juliebove

 
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Posted 10 July 2011 - 12:45 AM

I don't think that's normal. I went totally gluten-free when my daughter did. Eventually I went back to eating regular pretzels, occasional bread and Cinnamon Toast Crunch cereal. Doesn't cause any problems for me. I do still eat gluten-free pizza and pasta.
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#7 New_To_This

 
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Posted 10 July 2011 - 07:41 AM

Thanks for the honest answers. I know I can live with the gluten free diet, it just means I need to follow it when I go out with family and friends even if the dear hubby is not with. After I put this out here it got worse for a few hours, I was passing gas every minute or two. I went to the spare room to sleep just so I wouldn't gas my poor husband. Than I could let it flow freely so to speak. Forutnately I did not get the severe cramps that I used to get. So A lesson learned. I read somewhere a few months ago women over 40 are at risk of becoming gluten intolerant even if the never had a problem with it before. I feel this is do to the grenetic changes they continue to make on our foods so they can mass produce them. I grow my own garden and use heritage vegetables whenveer I can find them. So that helps, and I raise my own chickens both for our meals and for laying eggs, plus we raise our own turkeys too. An organic turkey is soooo much taster than a store bought. I don't know if I could ever go back.
Again thanks for your answers and have a great week!
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#8 T.H.

 
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Posted 10 July 2011 - 09:34 AM

Hope the diet goes really well for you!

OH, you might want to take some care with the poultry - most of the time the feed is full of lovely, lovely gluten, sigh. I know of a few people on farms who had to start wearing a mask when feeding, because the dust from the feed in the air was enough to inhale, get down the throat, and swallow a little. Not fun!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 Ev7777

 
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Posted 13 August 2011 - 03:39 PM

Try taking an anti-gas medication when you eat foods with gluten and see if that helps in social situations.
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#10 mushroom

 
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Posted 14 August 2011 - 07:33 AM

Try taking an anti-gas medication when you eat foods with gluten and see if that helps in social situations.


I shouldda bought shares in whatever company makes Gas-X :blink:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 ravenwoodglass

 
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Posted 15 August 2011 - 04:10 AM

Try taking an anti-gas medication when you eat foods with gluten and see if that helps in social situations.


That might help the gas symptom but it won't stop damage from being done. If you do go this route do make sure the antigas med is gluten free but IMHO better to simply avoid the gluten as eventually you may go from just having gas to having D. That is no fun if you are out for a pleasant night with freinds or family.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 allceliacs

 
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Posted 15 August 2011 - 02:56 PM

I'm with all the other comments. Obvious gluten intolerance and yes, I too should have bought stock in Gas-X. Best med for a Celiac!
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Celiac mom with two Celiac kids.

#13 viviendoparajesus

 
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Posted 16 August 2011 - 04:09 AM

I agree sounds like you are at least gluten intolerant. I have gluten intolerance and celiac's minus the official diagnosis because my doctor and I did not want to expose me to gluten for the test given the false negatives and the obvious harm gluten was doing to me at that point. My boyfriend heard about the benefits of going gluten-free, so he tried going gluten-free with me. When he went back to eating gluten on occasion, he did not have any noticeable problems. I have to agree that you must have some problem with gluten even if it is not as severe as celiac's you seem to have gluten intolerance or gluten sensitivity. If I were you I would avoid gluten. I would only take an anti-gas medication if needed after cross contamination. There are also enzyme products that help with digesting small amounts of gluten from cross contamination, but it does not allow people with gluten problems to eat gluten without negative repercussions. Best wishes!
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Misdiagnosed - IBS, TMJ, eczema, KP, etc
Real Diagnosis - Gluten & Casein (milk protein) Intolerance, Cross Reactivity to Yeast & Buckwheat
Recommend: Tests: Entero Labs Gluten Sensitivity & Gene Testing
Books: * Allergies by Dr. Carolee Bateson-Koch (digestion, yeast, parasites, body pH...)
* Why Do I Still Have Thyroid Symptoms by Dr. Datis Kharrazian (gluten & autoimmune problems)
* Change Your Brain Change Your Life by Dr. Daniel Amen (foods, supplements...)
Supplements: * digestive enzymes, * probiotics (dairy free - Klaire Labs - Pro5)

#14 cap6

 
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Posted 16 August 2011 - 07:42 PM

That sounds a lot like me. My gas was so bad that it seemed like a constant flow. Since going gluten-free it is little to none. :)
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