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Why I Still Eat Bread...


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#1 SandraLAVixen

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Posted 26 September 2012 - 07:04 PM

Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.
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#2 shadowicewolf

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Posted 26 September 2012 - 07:13 PM

....

So you willingly put yourself through that hell just to have that feeling of satisfaction?

You realize a wheat intolerence will not show up on a test? It is only found via an elimination diet.

sorry i just cannot understand that.
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#3 kareng

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Posted 26 September 2012 - 07:37 PM

Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.


So....pain for 5-8 hours & then passing out is the way to eat more calories? You know that's not true. If you can't eat for 8 hours plus the "passed out" time, you aren't eating much. Of course you are dying of starvation, you are eating one thing that makes you sick and then not eating for a day.

Sounds like you don't eliminate the bread because you don't want to eat? Do you have an eating disorder? Want to kill yourself? things to consider....
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#4 mushroom

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Posted 26 September 2012 - 08:33 PM

I think you do know what to do, you are just having a hard time doing it. Has nobody talked to you about non-celiac gluten intolerance? This is where you cannot tolerate gluten, but you flunk all the celiac tests. It is only recently that the medical community and the researchers, including the "God" of celiac, Dr. Alessio Fasano, have recognized that this condition exists. It apparently does not cause the same intestinal damage as celiac disease, but can have equally debilitating effects on one's life.

I would suggest you need to cut the bread pronto, and start eating wholesome whole foods, meats, veggies, fruits, nuts, seeds (and some rice) and regain your life. :)
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Diagnosed psoriatic arthritis 2004
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#5 SandraLAVixen

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Posted 26 September 2012 - 10:33 PM

I have been eating other foods, but at times I feel like I eat so much until I'm bloated but I still feel like I'm starving.

I'm just not used to not eating bread since I have eaten it my whole life and then this suddenly happens one day after Christmas.

Every test I've had says I'm not allergic to wheat or gluten, I can understand if I'm born with an intolerance to gluten, but this is something that just happens out of the blue one day.

PS I don't do this because I enjoy the pain or want to loose any more weight, I'm just starving and that's a hard instinct for me to ignore.
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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.

#6 flowerqueen

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Posted 26 September 2012 - 11:34 PM

Being allergic to something and being intolerant to something are two different things. If it happened 'out of the blue' one day after Christmas, maybe you have reached your tolerance level to gluten/wheat? Have you tried eating gluten/wheat free bread or pasta to see if you can eat that? There are lots of other food choices you could have without wheat, to build yourself up. If you have lost so much weight and being as ill as you say, you need to see a new doctor without delay to get to the bottom of why you are so ill.
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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#7 Celiac Mindwarp

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Posted 26 September 2012 - 11:34 PM

Listen, I did it for years before I knew what celiac was.

I had no energy and it helped, for an hour or two.

Now I know that
1 I wasn't getting nutrients because my guts were such a mess and couldn't absorb the good stuff
2 there is some pretty darn addictive stuff in there.

You will need some medical help.

The good news is that the addictive stuff passes pretty quickly once you are off the gluten, and your guts will start to heal.

Take advice from the folks here on how to do this.

For me, I beat myself up for not controlling it. Now I know with the info here it can be done.

Consider starting today

Thinking of you
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#8 SandraLAVixen

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Posted 27 September 2012 - 12:35 AM

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.
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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.

#9 Roda

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Posted 27 September 2012 - 03:13 AM

Sometimes there is no definative medical answers. You obviously have a severe reaction and have a need to be gluten free. When someone has a intolerance it won't show up on any tests. Elimination and your body reaction is the best measure.

My oldest son who is now 11.5 years old is gluten free and is not diagnosed with celiac. He has non celiac gluten intolerance. He has been blood tested annually since 2008 after my diagnosis, and every time his tests are a resounding negative. He has suffered constipation his entire life and was small for his age. Last year his symptoms got worse with daily abdominal pain/bloating/gas and nausea. This to me is not normal. Took him for the celiac blood tests again and a scope just in case he was a seronegative celiac. His scope/biopsy was normal also. I decided that it was worth a shot to put him gluten free because of his symptoms and his family history of celiac (mom and younger brother). Within 1.5 months all his symptoms resolved, he gained 6 pounds and his color was much better. He has also grown 4" in the last 18 months too. We did decide to challange him after 3 months and he did have symptoms. He decided for himself that he wanted to stay gluten free because he felt so much better. I thought that was a pretty big decision for a 10 year old to make. It's been a little over a year now and he his healthy and happy.

I don't know how old you are but do yourself a favor and go gluten free. You may never get any answers from doctors as to why you suddenly have this problem but you do. I hope you have the strength to do it so you can live your life the way you deserve..HEALTHY!
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#10 Persei V.

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Posted 27 September 2012 - 03:43 AM

Much like Roda's son, nothing showed up in my tests. But it's still a fact I cannot eat gluten or else I will have reactions to it. If that's the same to you, you shouldn't need any tests to stay away.

A lot of other people here had negative to their tests too. Forgive me if I sound harsh here, but I read it as if though you lack of diagnosis was sort of an excuse to eat gluten even though you feel bad eating it...

It is strongly inforced here to have a diagnosis before going gluten free, but like Roda already said, intolerance won't show up in tests. If there's really nowhere to go, I think you should return to a gluten-free diet. It might take some time to work, but it has before, and will again.
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Lactose free: 8/6/2006
Gluten and dairy free: 5/2/2012
Grain free: 11/12/2012

I am able to eat somre processed foods again (chocolate, lollipops, soysauce).

#11 ravenwoodglass

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Posted 27 September 2012 - 03:46 AM

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.


Some of us will never show up positive on tests. I am one of them and was close to death by the time I was diagnosed. You have done the best 'test' there is which is dropping gluten and then challenging. You are clearly reacting so go with what your body is telling you. I hope you will listen to your body. Read as much as you can here and ask any other questions needed.
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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 bigbird16

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Posted 27 September 2012 - 06:42 AM

Sandra,


A lot of us were bread and pasta fiends. I was a baker and cake decorator. I loved baking for people. I rarely ate my own cakes, as they made my stomach hurt. (Hmm, I wonder why?) My favorite breads to make were banana nut and dill onion. I loved it when my home reeked of sugar and flour from the cakes.


When my dad suggested that my migraines might be connected to gluten, I gave it up. Cold turkey. The possibility that there might be even some relief from the incredible daily pain was enough to make me stop eating gluten. I had no idea that so much of what I had been feeling would be affected by dropping it. I had been feeling like I was slowly dying with extreme fatigue and various pains. Instead of genuine hunger, I felt a gnawing pain in my belly. Within days I started to feel better, and a matter of weeks later I felt better than I had in ages with increasing energy. My stomach actually started to rumble when hungery instead of hurting, and I didn't get lightheaded anymore.


Too bad I didn't know about testing beforehand. When I did inquire about testing, I was blown off and couldn't even get an appointment to see a doctor for at least another two weeks. I had been gluten-free for a number of weeks already. I ordered a Biocard test to see if I could test myself, and I tried going back to eating gluten so I could be tested. I didn't make it through one meal. I had a violent reaction. That was my answer. Of course I tested negative on the Biocard test; I had already been free for too long. Who cares. I understood what my body was telling me. Screw the tests.


I mourned the loss of my breads and pastas and cakes and cookies. I wondered what I would eat that would satisfy me. But I took it as a challenge to get creative in the kitchen and try new things. I've tweaked my diet over the last four years, discovered more intolerances, and am in a happy place. I know what fuels me well, and I know what makes my body happy. It's a far far cry from how I used to eat.


Give up the stuff that hurts you, and play with your food! Sure it will take some adjustment time, but it will get better.
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Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made

Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7

"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)

#13 GottaSki

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Posted 27 September 2012 - 06:55 AM

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

I think you need to re-read the responses to your post. NON-CELIAC GLTUEN INTOLERANCE is the cause of your symptoms. There are NO MEDICAL tests that can diagnose this - the only test is completely removing all gluten. You need to remove ALL gluten - not just breads. It is tough to remove all sources, but once you do you will feel better, not necessarily in a few days - it can take months.

You have already identified that your body can't tolerate gluten. Accept it and start improving your health.

This site has plenty of information to help with the transition along with lots of folks ready to answer questions and support you, but we can not help if you refuse to hear what needs to be done. Your choice - I hope you decide to start healing.

Good Luck to you.
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-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 :)


#14 MitziG

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Posted 27 September 2012 - 10:30 AM

Very few of us started out with having a problem with gluten. We all loved bread and pasta, with a few exceptions. But when something is killing you, you stop doing it.

You apparently have a gluten intolerance. The only test for that is the one your body does for you. When you eat it, you get sick. Perios.

There are thousands of delicious foods available besides gluteny breads. And gluten free breads and muffins and pastas can be every bit as delicious as gluten-filled ones. (But most of the store bought ones taste like dirt. Save your $ and learn to bake)

Time to stop making excuses unless your plan is to actually starve to death, because it sounds like that is exactly what will happen if you continue the path you are on.
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#15 kittty

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Posted 27 September 2012 - 11:06 AM

Try this flour: http://www.bobsredmi...our.html?&cat=5
And this recipe: http://www.bobsredmi...php?recipe=7249

This isn't the greatest bread recipe out there, but it's one of the easiest, and it tastes similar to regular bread. Gluten free doesn't have to be complicated, expensive, or tasteless.

You have to understand that gluten is probably the underlying issue here, and you'll never get better until you cut out the cause of your illness...for good! You need to find substitutes for bread, or you'll continue to get sicker and sicker. Eating gluten is no longer a choice for you, it's a potential death sentence.
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