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Why I Still Eat Bread...


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#16 SandraLAVixen

 
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Posted 27 September 2012 - 01:46 PM

I'm not 100% sure if it's wheat flour or gluten, I know that I can eat unprocessed wheat like cereals without any problems.

I also need to figure out if it's the "bleaching agents" in enriched wheat flour that is causing me the problems because I've known for quite some time that I am allergic to bleach.

What if there is some third factor that is making my system react to bread and how come my endoscopy images did not show any damage to my intestines and I don't have any constipation or diarea?

Another issue is that I was told that gluten intolerance is primarily a Caucasian trait, is this true? I'm mainly a Russian/Arctic/Siberian native and Asian mix (or at least that is what my mom insists).

Please understand that I'm not trying to be difficult or challenge(y), I'm just trying to figure this out as its so weird. Thanks to everyone who has been patient with me and helping me with ideas. I really appreciate it. :)
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#17 GottaSki

 
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Posted 27 September 2012 - 02:26 PM

I am not 100% certain you have a problem with gluten either. What you presented was you have unexplained weight loss, abdominal pain after eating bread and donuts, extreme fatigue and feeling like you are not getting energy from your food.

Did you have a full celiac blood panel? Did your gastroenterologist take enough samples from the small intestine? Do you have a copy of the endoscopic report - often there will be other indications - inflammation, etc. which the doctor will note on the report but will not always mention in his follow up with you.

What I am saying is you have enough symptoms and are connecting them to bread so it makes sense to completely eliminate all gluten from your diet for 3-6 months. If you improve and believe it is some other substance besides gluten, trial items without the suspect ingredients - but give your body the three - six months gluten-free - this is the ONLY test if you are gluten intolerant.

It's your choice - removing gluten could be the answer. If you feel like you are starving to death, isn't worth a trial to see if this is the reason? I guess I'm not understanding - you say bread is the only food that you feel gives you energy, but it also causes extreme abdominal pain and you sleep for hours afterward.

It is not true that Celiac Disease is only found in Caucasians. There was a study that indicates it is more prevalent - closer to 1 in 100 for Caucasians and closer to 1 in 140 in other races. Again these numbers are for Celiac Disease - I know of no difference between races for Non-Celiac Gluten Intolerance.

I do hope you find a solution that will help you lead a healthy life.

Good Luck to you.
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#18 mushroom

 
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Posted 27 September 2012 - 03:21 PM

May I suggest that if you think you do not have a gluten problem, but rather a bread problem, that you eat all gluten except bread and see what happens?? :) Load up on pasta and cookies and cake. That test should be fairly definitive on whether bread alone is causing your issues. If so, eliminate the bread; if not, then we can help you take it from there.
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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

#19 SandraLAVixen

 
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Posted 27 September 2012 - 09:52 PM

Yes, I have both the endoscopy and pillcam reports, both report normal small bowel and nothing out of the ordinary.

I had the Celiac profile (bloodwork) and it was normal, biopsies where only positive for H.Pylori.

I avoided gluten from Feb, Mar, Apr, May of this year, during that time I still felt weak and crampy, I only missed by period in Feb but things went back to normal afterwards.

By "starving" I mean that when I eat non-bread foods, I still feel hungry afterwards but my stomach feels so nauseous that it does not want any more food.

I'm not 100% sure if it's gluten but I do know that cereals do not trigger anything, I'm still trying rice flour or corn flour products to see what happens.
  • 0
Wheat and gluten tolerant until Dec 2012...
causing pain afterwards...
Gluten-free Feb to Mar 2012.
Endoscopy, pillcam, biopsies, Celiac profile, NEGATIVE.
Elimination diet isolated to gluten thus far Sep 2012.

#20 Pegleg84

 
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Posted 28 September 2012 - 06:39 AM

Hi Sandra

Yes, it really does sound like you have an intolerance to at least wheat, if not gluten entirely.
Either way, it's probably best for you to cut out gluten completely for at least 6 months (as suggested) and see if you start doing better. It takes a lot of patience. You won't be 100% overnight. Even if you don't have the damage caused by Celiac disease, your gut still needs to heal and get used to you feeding it different things.
I also recommend doing lots of reading up on the gluten-free diet, Gluten Intolerance, etc etc.
I know its difficult to accept having a condition when there is no medical test to confirm it, but when it comes to food intolerances, you have to listen to your body. If bread makes you sick, don't eat it. It's not worth it. Your body will adjust to not having it if you give it time. Also, even though other wheat products like cereals and such aren't causing a reaction, it doesn't mean they might not be contributing to the problem. For example, if I unknowingly eat gluten-contaminated food, I might not feel any reaction until a couple days later after the damage is done.
I too remember still feeling hungry after non-gluten meals for a while, but I wasn't in pain! So eventually my body healed and adjusted to the new foods I was eating.

So, be patient and be strong. It's a big life change to make, but it's worth it.

Take care!
Peg
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#21 periwink

 
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Posted 28 September 2012 - 01:45 PM

Sandra - a couple things stood out when I read your orginal post a couple of days ago and I keep thinking about you and your situation. Over the years I have learned to listen to my intuition and this is one of those times. I think it is obvious that you and gluten do not get along, other people have suggested reasons why and even helped put a name to it but it boils down to simple cause and effect. You eat gluten, you have terrible pain you pass out.

Speaking from years of experience what I see is a full blown eating disorder that you are disguising. You mentioned a 40 lb unitentional weight loss, if you know that gluten will cause the effect that it does then that is intentional weight loss, it is the same as throwing up or abusing laxatives. And yes you are starving your own body by this repeated damaging behavior.

I think the most telling,and saddest thing you said was about your mom and doctor not caring. It is a cry for help and your gluten intolerence is the vehicle. Though my story is different I see myself in your words. I have spent too much time in hospitals for eating disorders (and I have been healthy for a long time) and eating disorders can be very sneaky.

Sounds to me like you have a lot on your plate. Maybe you can stop looking for an answer and agree to be gluten free while you use that energy to look for under lying issues. I wish you luck and a shoulder to lean on. Periwink <3
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#22 SandraLAVixen

 
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Posted 28 September 2012 - 02:35 PM

Thanks Periwink, I do want to mention that I did have ED when I was around 12 (binge without purge) and it was shortly after a random sexual assult. That was the huge weight gain in my early teens that I now lost all the weight from.

I feel so strange being so heavy and big and now being so thin and starving, I always thought that it was safe for me to eat anything since no one in my family has ever had any food allergies or ED. I really hope this is not another ED, I really hope not because I don't know what to do.

I'm not really sure what my body is telling me, when I'm in pain, I always say to my stomach "okay, okay, I'll do whatever you want, just tell me what to do and stop the pain" and I don't know if it wants more food or no food.

All my GI doctors keep telling me that there is no damage from the endoscopy and pillcam images, they even showed it to me next to images of a bowel with Celiac disease and they look totally different.

My mom says this is all in my head, and now I feel like I'm going crazy or something. My mom also won't accept that wheat or gluten is the cause.

Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.
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#23 mushroom

 
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Posted 28 September 2012 - 02:46 PM

Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.


That is a great place to start. :) Pay attention to what flours they use in the breads and which tastes you like and dislike. There are so many different flours used in gluten free baking and you may not like all of them. And be prepared that the bread is not going to be like gluten bread. Perhaps you could start making a grilled cheese or ham and cheese sandwich. Some breads if you find a good one can be eaten with just butter but most taste better toasted. You could buy a baguette and make crostini (nom, nom - wish I could have tomato :( ). Be creative in making your bread taste good because it takes time to adjust to the different flavors. And be prepared that you may want to feed the birds and squirrels some of it :D DO NOT (general consensus here, although some like it) buy Ener-G rice bread!!!! :lol:

Edited to add: With the holidays coming up, some say Ener-G makes good stuffing. :D
  • 1
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

#24 GottaSki

 
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Posted 28 September 2012 - 03:20 PM

Absolutely - a great start.

If you don't have luck at a bakery, you should be able to find Udi's breads and muffins at a store near you. Mushroom is right - some gluten-free bread tastes like drywall. Toasted or grilled cheese Udi's is probably the best easy to find solution.

Also want to add -- gluten is often very sneaky in the way it effects us. You can have very serious symptoms when gluten intolerant - not just with celiac. These symptoms can include neurological and behavioral issues - many of us that went undiagnosed or misdiagnosed while being told we were stressed, depressed or that are symptoms were all in our head. You hear that enough and you can't help but think maybe it is all in my head. Turns out some symptoms were in our heads - but the CAUSE was a very real problem with gluten screwing up our digestive systems.

Hang in there - keep trying to find answers!
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#25 frieze

 
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Posted 29 September 2012 - 06:19 AM

perhaps your abuser is a family member, and you saw him/her at christmas? Good luck
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#26 SandraLAVixen

 
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Posted 29 September 2012 - 12:19 PM

This gluten-free bakery makes things out of rice or corn flour, so I'm able to elimiate either wheat or gluten as the trigger, going to find out today...

frieze: it was some one I never met at a grocery store.

Thanks everyone. :)
  • 0
Wheat and gluten tolerant until Dec 2012...
causing pain afterwards...
Gluten-free Feb to Mar 2012.
Endoscopy, pillcam, biopsies, Celiac profile, NEGATIVE.
Elimination diet isolated to gluten thus far Sep 2012.

#27 Cattknap

 
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Posted 29 September 2012 - 02:03 PM

Really it is not bread that makes you not hungry....vegetables, fruits, legumes, beans, nuts, seeds - those foods make you full. Just elminate bread and start eating more of the food that I listed - I guarantee you will be fuller longer and be healthier.
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#28 SandraLAVixen

 
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Posted 29 September 2012 - 06:12 PM

Really it is not bread that makes you not hungry....vegetables, fruits, legumes, beans, nuts, seeds - those foods make you full. Just elminate bread and start eating more of the food that I listed - I guarantee you will be fuller longer and be healthier.


Actually, eating a lot of those foods does make my stomach feel full (very fast) but I still feel starving, hungry, and tired. It's like feeling hungry but no room to put anything in my stomach.

Btw, just got a bunch of rice breads and cake, I already ate one rice bread and so far so good...
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#29 shadowicewolf

 
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Posted 29 September 2012 - 07:00 PM

Actually, eating a lot of those foods does make my stomach feel full (very fast) but I still feel starving, hungry, and tired. It's like feeling hungry but no room to put anything in my stomach.

Btw, just got a bunch of rice breads and cake, I already ate one rice bread and so far so good...

I'm starting to think the fullness/starving issue is more of a psycological one (no offense intended here). You'd be surpised on what stress and whatnot can do to you.
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#30 Cattknap

 
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Posted 30 September 2012 - 02:30 AM

Actually, eating a lot of those foods does make my stomach feel full (very fast) but I still feel starving, hungry, and tired. It's like feeling hungry but no room to put anything in my stomach.

Btw, just got a bunch of rice breads and cake, I already ate one rice bread and so far so good...


Could this constant feeling of being hungry/tired be psycological? No offense meant, but what you are describing sounds more mental than physical.
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