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Im Starting To Get P/o


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29 replies to this topic

#1 heidi g.

 
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Posted 01 February 2012 - 03:35 PM

I been gluten free for since October. Every single day my stomach still hurts after eating. Could it possibly be anxiety? I can feel (internally, not with my hands) that when I lay down the bloating is right on top of my stomach so I'm guessing that's my intestines. I had a negative blood test, a positive endoscopy, and genetic testing came back that's I do carry the genes for celiac. If it's celiac than why isn't my gluten free diet working?? I am not getting cross contaminated I shop at whole foods and I specifically buy only products that's are specially made gluten free. Right now I just ate a gluten free bagel and my intestines feel like someone rubbed them with sandpaper and i feel like there is a giant ball slowly inflating. I look like in freaking pregnant half the time. I accepted this crap but I'm getting very angry with why i can't feel better. I can't live my life like this anymore. I don't know what else to do my doctor just tells me to stay on the gluten free diet. I can't work and i don't even think you can go on disability for this... I have to support my son i can't have my fiancÚ do everything. Anyone else ever feel like this even on the diet. Can cigarettes cause this? Can stress. If anyone can relate to this please help.
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#2 heidi g.

 
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Posted 01 February 2012 - 03:37 PM

And I apologize with the bad grammar I'm writing on a phone.
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#3 Korwyn

 
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Posted 01 February 2012 - 03:40 PM

I been gluten free for since October. Every single day my stomach still hurts after eating. Could it possibly be anxiety? I can feel (internally, not with my hands) that when I lay down the bloating is right on top of my stomach so I'm guessing that's my intestines. I had a negative blood test, a positive endoscopy, and genetic testing came back that's I do carry the genes for celiac. If it's celiac than why isn't my gluten free diet working?? I am not getting cross contaminated I shop at whole foods and I specifically buy only products that's are specially made gluten free. Right now I just ate a gluten free bagel and my intestines feel like someone rubbed them with sandpaper and i feel like there is a giant ball slowly inflating. I look like in freaking pregnant half the time. I accepted this crap but I'm getting very angry with why i can't feel better. I can't live my life like this anymore. I don't know what else to do my doctor just tells me to stay on the gluten free diet. I can't work and i don't even think you can go on disability for this... I have to support my son i can't have my fiancÚ do everything. Anyone else ever feel like this even on the diet. Can cigarettes cause this? Can stress. If anyone can relate to this please help.


Hi Heidi,

Very often people with Celiac will have developed other intolerances as a result of the untreated celiac disease. As peoples bodies heal, for many, these intolerances may fade away after a significant time avoiding the trigger items. Does this only happen with grain based products, or things with yeast in them? Have you tried an elimination diet?
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#4 Melissa Palomo

 
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Posted 01 February 2012 - 03:42 PM

Is it possible that you also have another allergy/intolerance as well? Are you still eating dairy? Try cutting dairy out and see how you feel - that's often a common problem for Celiacs as well...

In the meantime - hugs! I know it's a crappy feeling and I hope you find a solution quickly!
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I'm Melissa. I am 28, diagnosed in August 2008. I'm a photographer and a blogger, too. :)


#5 Skylark

 
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Posted 01 February 2012 - 03:52 PM

Hi, Heidi. I'm sorry to hear that you are still sick and so frustrated. I totally agree with Melissa to try cutting out dairy. The other thing that comes to mind is fructose malabsorption. You might look into that if cutting out dairy doesn't help.
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#6 heidi g.

 
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Posted 01 February 2012 - 04:26 PM

Thanks guys. I been making homemade chicken and rice soup and I seem to feel better the next day. But anything other than rice and steamed vegetables and salad seem to make me feel horrible. I know I can't tolerate soy and dairy that well or eggs. Can people be intolerant to sugar? Candy and sweets make me feel really bad too.
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#7 Aly1

 
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Posted 01 February 2012 - 04:39 PM

Thanks guys. I been making homemade chicken and rice soup and I seem to feel better the next day. But anything other than rice and steamed vegetables and salad seem to make me feel horrible. I know I can't tolerate soy and dairy that well or eggs. Can people be intolerant to sugar? Candy and sweets make me feel really bad too.


Absolutely!! Omg, eating sugars messes me up so bad, just as bad as gluten does! Its hard bc I have Such a sweet tooth, but I can't tolerate any of them. Well that's not true - I can eat what diabetics eat sweetener-wise, and do well. (well I could until I developed issues with corn and learned that my go-to sweetener fructose is derived from that and now messes me up!) I've been off sugar for 25 years and getting off it changed my life. Seriously. Try investigating diabetic-approved sweets and see if you feel differently. If not, eliminate it entirely.
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#8 Skylark

 
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Posted 01 February 2012 - 05:18 PM

If you can't eat sugar well, you really, really, really need to look into fructose malabsorption. Chicken and rice soup is very low fructose if you use white rice. So are most steamed veggies and salad greens.

The Wikipedia article on fructose malaborption isn't too bad.
http://en.wikipedia....e_malabsorption

This site is by a woman with fructose malabsorption who set up a wiki for reference.
http://hedra.pbworks...25076/FrontPage
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#9 Aly1

 
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Posted 01 February 2012 - 06:20 PM

If you can't eat sugar well, you really, really, really need to look into fructose malabsorption. Chicken and rice soup is very low fructose if you use white rice. So are most steamed veggies and salad greens.

The Wikipedia article on fructose malaborption isn't too bad.
http://en.wikipedia....e_malabsorption

This site is by a woman with fructose malabsorption who set up a wiki for reference.
http://hedra.pbworks...25076/FrontPage


I find fructose malabsorption very interesting, but it's different from what I have in that fructose was a go-to for me for many years to avoid glucose and other sugars. It's just with my recent corn issues that I can no longer tolerate it, as it's corn-derived. I post this so that the OP understands that there are a couple different types of sugar intolerances, one where you avoid fructose, the other where fructose is fine as it causes a slower rise in blood sugar levels (which is along the lines of what diabetics require from sweeteners). There are a host of foods I avoid due to their glycemic impact but it's too lengthy to go into here. If you discover in the end that your sugar issues align with what I've described, please do message me and I can send you the whole diet (the other foods will also make you feel lousy too). Good luck :)
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#10 Skylark

 
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Posted 01 February 2012 - 08:57 PM

Good point! I'm kind of like you. I crave refined sugar badly, eat too much, end up tired and woozy. I don't think I'm as sensitive because I'm fine with fruit, honey, dates, and other unrefined sugars in reasonable amounts. My mom has fructose malabsorption and gets pain and bloating from fructose. It's pretty funny because I'm reaching for honey for my coffee and she always has a jar of dextrose. :lol:
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#11 heidi g.

 
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Posted 02 February 2012 - 03:29 AM

That's interesting I'll have to look into that. I can't tolerate popcorn, tortillas, raw corn, without getting a severe case of indigestion and flatulence and nausea. When i drink soda, same way. I was ok before but now lately, I'm extremely sensitive to everything! And i get scared because i don't know which symptoms are normal for celiac and which ones aren't. I have no one to really ask. I'm the only one in my family whose been diagnosed with it. I believe my mom and brother could possibly have it because my mom, most of my life, has had alot of my symptoms now that i look back. But she refuses to believe it's possible. So I'm kind of left in the dark here. Sometimes i just feel like staring in the dark. What if its not even celiac disease. How the crap do you tell? Negative blood work, there was something positive in my endoscopy (said a raises number of something indicating that there is possible celiac disease) and the genetic said positive for the celiac genes. But then it also said anyone could have those genes! Even normal people walking around who don't have it. I never get a clear answer :[ and i spent all that stinkin money getting tests done to get such an unclear answer.
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#12 dilettantesteph

 
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Posted 02 February 2012 - 05:20 AM

I was very sick when I was finally diagnosed. I was regularly not making it to the bathroom. I couldn't leave the house without fear of a huge embarrassment. I couldn't work. I couldn't take care of my kids properly. At first I felt so much better just eliminating cereal and bread I was elated. Then I realized how much harder it was. I eliminated all the other things and found that I was still reacting to gluten free foods which most of the people who post on this forum don't react to. I couldn't figure out what was going on, and I was still quite sick.

Finally my GI doc told me that some celiacs react to smaller amounts of gluten than others. Some can't even tolerate the tiny amounts allowed into gluten free foods. They are better off eating a diet consisting of produce and meats, a whole foods diet. Not one purchased at the Whole Foods store, but one that doesn't come out of a package or jar. That was the beginning of returning to better health for me. I'm doing better now than I was in my teens.

I am careful about keeping a food journal and only adding one new food per week. Still, sometimes a previously safe food will become unsafe due to some change made by the suppliers, and then it is very hard to figure out what. I have to do careful elimination/challenge diets of everything in my diet, hoping that I guess the right thing before I get too sick.

Your problems could be one of the other things referred to above, or something else, but you should consider super sensitivity to low levels of gluten too. It is pretty easy to find out. For a couple of weeks eat only produce and unprocessed meat. Keep away from produce grown on straw like mushrooms. If that improves things, then you may have to look into very low level cc more carefully.

I hope you figure out what is causing your continued problems. I know how frustrating it can be to remain sick and not have the answers you need to get better.
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#13 Aly1

 
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Posted 02 February 2012 - 05:59 AM

That's interesting I'll have to look into that. I can't tolerate popcorn, tortillas, raw corn, without getting a severe case of indigestion and flatulence and nausea. When i drink soda, same way.


Hmmm, it definitely sounds like corn could be an issue for you, and thats a common one. Is the soda you drink sweetened with high fructose corn syrup? Like I said before it's common to have a number of sensitivities come to light once you remove gluten, I don't know why. Just last night I had another a-ha moment when I realized I'm having problems with onions! I'd thought I was having digestive issues because I was eating a lot of beans - I figured it was normal to be gassy if you're eating a lot of them - but when hubby prepared the same beans without onions (he just forgot to add them as he usually does!) I didn't have any problems. It was the onions all along and I had no idea. I've been suffering for 2 months for no reason! So we basically have to be detectives and sometimes along the way the answers just come when you least expect it. Hope you have some more a-ha moments of your own soon :).
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#14 Bubba's Mom

 
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Posted 02 February 2012 - 06:50 AM

It looks like you *might* have an additional intolerance? The corn sounds like a likely one? If sweets bother you, the fructose might be something to consider too?
I wonder about the fructose malabsorption too, for myself. In reading the link I found a few foods that I've had bad reactions to.

I also wanted to mention..if you have damage in your intestine you may react badly to the hard to digest alternate grains? Your mention of eating a bagel and not feeling good could be that..or what did you have ON the bagel?

Some of this is so tricky to figure out, and some of the reactions are just because you need to do some healing. Are you keeping a food journal? It can help sort things out.

I completely understand your frustration!
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#15 Bubba's Mom

 
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Posted 02 February 2012 - 06:51 AM

Hmmm, it definitely sounds like corn could be an issue for you, and thats a common one. Is the soda you drink sweetened with high fructose corn syrup? Like I said before it's common to have a number of sensitivities come to light once you remove gluten, I don't know why. Just last night I had another a-ha moment when I realized I'm having problems with onions! I'd thought I was having digestive issues because I was eating a lot of beans - I figured it was normal to be gassy if you're eating a lot of them - but when hubby prepared the same beans without onions (he just forgot to add the. As he usually does!) I didn't have any problems. It was the onions all along and I had no idea. I've been suffering for 2 months for no reason! So we basically have to be detectives and sometimes along the way the answers just come when you least expect it. Hope you have some more a-ha moments of your own soon :).


AHA! Onions. Another piece to the puzzle? :o
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