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I Love Bread.


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#1 rubes

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Posted 12 November 2012 - 09:43 PM

Hi there,

Last week I was at an election party and drank more than my share of beer. The next day I woke up with utterly crippling stomach pains. I have had a baby, and the best way I can describe it is just like early labor. My whole abdomen was clenching up repeatedly, all day. I thought it was a very strange hangover, but it didn't go away the next day, or the next, and so on. It's not nearly as bad as that first day, but over the course of this time I've also had constipation, diarrhea, and vomiting. Yesterday I decided I would cut out wheat, and it seems to be helping--perhaps.

I have been to the MD to have my gall bladder checked twice in the past year (no GB problems), once for knee pain, and once for a crippling lethargy that was putting me to sleep every afternoon for hours--I was missing picking up my daughter at school! I was diagnosed that time with low vitamin D levels. I have also had wandering joint pain--shoulders, ankles, hips, knees, wrists. I get migraines. My daughter was small at birth. I have ADHD, anxiety, and occasional depression. I appear to have very mild anemia and low calcium, according to today's bloodwork.

After seeing my MD today, I was sent to the ER to rule out appendicitis. I knew I didn't have it, but I hoped they'd test me for celiac. They couldn't, but they gave me Bentyl, which seems to make me nauseated, but has helped the pain quite a bit.

Tomorrow I'm going to wade through the referral process and (I hope) get in to see a gastro. I am so sad at the idea that I might have to give up bread that I have been considering going out for a slice of pizza before the guillotine falls. But the past few days have been so awful that the idea is only mildly mouth-watering.

I know that to a seasoned celiac I must seem whiny and naive, but I've gone the route of difficult diets once before in my life, and it was--difficult. To give up my very favorite food forever just seems foot-stomping unfair to me, and it makes me want to crawl in bed and never eat again.

I don't know what I want from any of you. Solidarity? Forgiveness? A get-out-of-celiac-free card? Obviously I want to talk about it, though.

Thanks for listening. Any guidance is appreciated.
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#2 Celiac Mindwarp

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Posted 13 November 2012 - 05:14 AM

Stay on gluten while you get tested if you possibly can while you get a diagnosis. It is harder if not impossible if you are gluten-free already to get accurate testing.

Given improvement already, when you do go gluten-free, if appropriate, you may find it easier than you think. I had to do a gluten challenge to reintroduce it before testing and thought I would make the most of it. Actually I hated it and couldn't wait to stop.

Talking it through is what we are here for, so welcome.

Feel free to foot stomp too. We'll still be here :)
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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

#3 shadowicewolf

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Posted 13 November 2012 - 05:56 AM

Eat it all you want while your getting tested. Trust us, we don't miss it.

I'd rather have no bread over "D" any day.
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#4 GottaSki

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Posted 13 November 2012 - 06:36 AM

Welcome!

Go ahead and eat as much glutenous bread and pizza as you want until all your celiac testing is complete. If gluten is a problem for you - you'll be better prepared to remove it once you've had proper testing and/or become more ill while consuming it.

The tests become inaccurate when you remove gluten - so for now here is your "get out of living gluten-free card". Make a "bucket list" of gluten filled foods and take the time between now until your GI appt to learn everything you can about celiac disease and non-celiac gluten intolerance (NCGI).

Feel free to come here with questions or to whine, rant or stomp your feet - there are always people here to listen, answer and/or give you a swift kick (oh I mean gentle nudge) in the right direction.

Hang in there :)
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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 :)


#5 SMDBill

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Posted 13 November 2012 - 07:09 AM

That agony you felt after the beer sounds a lot like what some of us feel after ingestion of gluten. It's horrible and it's effects do not go away quickly. If celiac is what you have, the healing process is not immediate. You may feel better very soon, but the internal work takes a lot of time.

I think your feelings are normal. I'm only a couple months into being gluten-free and I still have cravings. I just keep them in perspective because I know what it feels like to eat it. I just think of it like poison and if it's a food I dearly love, I try to find a similar alternative. My love was fried chicken and pizza. I've found alternatives for both. But oh how I miss Little Debbie :) I had a Swiss Cake Roll every day for probably the last 30 years or more, but I stopped cold turkey. No choice really. I was offered a donut this morning at work, but had to politely decline. I love donuts, but they're poison so I just smile and decline.

If you get your body feeling better, the choice becomes so much easier. You can feel so confident in avoiding danger because you know what feeling badly really means. It's a very quick ride to horrible health if we cheat, so it's easy to decline a bad food or avoid a restaurant when it means we get to continue to feel good. We're blessed to have something mostly controllable :)
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#6 bartfull

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Posted 13 November 2012 - 09:15 AM

If you like french bread, after you have been tested go buy yourself a loaf of Udi's MULTI GRAIN bread. It is HEAVENLY! Even my non-celiac friends love it. If you like those multi-grain breads in the grocery store with all the nutty little bits in them, go buy yourself some Canyon Bakehouse San Juan Seven Grain bread. Another one that non-celiac people absolutely love.

There are gluten-free pizzas available too. (NOT Dominoes though, no matter what they say.) And you can buy gluten-free pizza dough at most health food stores.

You'll be OK. :)
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#7 AandGsmomma

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Posted 14 November 2012 - 02:32 PM

I totally felt the same way. I would never be able to give up bread, pasta, or baked good. That was until I found out how malnourished I was and thats why I spent years feeling awful. Way it hard to give up, Yes, but totally do able. I still have a long way to go, but Im getting better. Plus, there are so many gluten free options avaliable.
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#8 love2travel

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Posted 14 November 2012 - 03:49 PM

Don't panic! I felt the same most definitely. Food is my life and obsession. You know what? If you enjoy baking, you can actually enjoy decent gluten-free bread that is better than any you can buy. I made fantastic breadsticks the other day. If I crave something, I make it, including pastry, pizza crust, doughnuts, breads, cinnamon buns. Sure, they do not taste like gluten stuff but after awhile it gets better. Honest. I actually cried the first time I made bread. I hated it. I hated the process, too. But now I am enjoying experimenting with various grains and flours. And there are recipes out there that require you to roll out dough which is AWESOME.

Hang in there. Let us know what happens! Either way, you WILL be ok. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#9 Takala

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Posted 14 November 2012 - 09:15 PM

As love2travel says, you can learn to make freshly baked gluten free bread and baked goods, even pizza crusts, that are acceptable. Tasty bread type items can be made out of almost anything if you find yourself with further restrictions, such as tapioca, seeds, nuts, coconut, beans, bananas, sweet potatoes..... You know that you have done a major score when you serve it to non- celiacs (glutenoids) and they praise it. Also, retail opportunities for purchasing ready-made, edible gluten free breads and baked goods have expanded dramatically in the past decade. It used to be a sort of joke that store- bought gluten free bread wasn't really meant to be eaten, but used as a door stop. Now, there are gluten free bakeries in many major metropolitan areas.
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#10 rubes

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Posted 16 November 2012 - 11:30 AM

Hi everyone,

Thanks for your responses. I started a gluten bucket list, and I've been going through it, eating all the things I think I'll miss. For a couple of days I was feeling somewhat better, but that all collapsed yesterday (two of my favorite bakery's english muffins that were going to go stale and a 1/2 a bagel--yeah, not the best idea after all) in the big D and hives, along with an insatiable itch.

The good news is that I got an appointment with a gastro for next week, after being told I'd have to wait until January. I can't tell you how depressing that thought was--that I'd have to suffer like this until January (and beyond, assuming all the tests would not be instantaneously performed).

I am also thinking I may have to change primary care physicians, but I'm waiting until I get in to see the gastro to do so. In the meantime, I've been Googling every symptom I've had over the past 10 years or so, along with the word celiac, and I am shocked that they're all there. Even my hair color may put me at risk--is that me being insane, or is it more insane that nobody's ever connected the dots before this?

Anyway, I'm hanging in there, but not happily. There's a cloud over me, a big dark glutenous mass of a cloud.

Thanks again for listening.

Ruby
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#11 GottaSki

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Posted 16 November 2012 - 01:19 PM

Hi Ruby!

So sorry that you are at the stage where you know gluten is a problem and are still asked to eat it. It doesn't help much, but with strong reactions it may help to limit your consumption to just a slice or two of glutenous bread at night rather than for breakfast -- this doesn't help everyone, but it might help a touch until the tests are run.

You are not insane - yet the system that is in place to detect Celiac Disease (or lack thereof) seems so to many of us that went undiagnosed for years - even decades.

The University of Chicago has the most complete list I've seen - over 300 associated symptoms...here is a link:

http://www.curecelia...SymptomList.pdf

Hang in there :)
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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 :)


#12 rubes

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Posted 18 November 2012 - 01:09 AM

Hi there,

Would you folks advise me on the initial blood tests I need to get to confirm a diagnosis? I know that sometimes it's not that simple, but assuming it will be simple, what tests do I need to request? (Appt. is Weds, 11/21.)

Thanks!
Ruby
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#13 Kat L

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Posted 18 November 2012 - 05:13 PM

Hi everyone,

Thanks for your responses. I started a gluten bucket list, and I've been going through it, eating all the things I think I'll miss. For a couple of days I was feeling somewhat better, but that all collapsed yesterday (two of my favorite bakery's english muffins that were going to go stale and a 1/2 a bagel--yeah, not the best idea after all) in the big D and hives, along with an insatiable itch.

The good news is that I got an appointment with a gastro for next week, after being told I'd have to wait until January. I can't tell you how depressing that thought was--that I'd have to suffer like this until January (and beyond, assuming all the tests would not be instantaneously performed).

I am also thinking I may have to change primary care physicians, but I'm waiting until I get in to see the gastro to do so. In the meantime, I've been Googling every symptom I've had over the past 10 years or so, along with the word celiac, and I am shocked that they're all there. Even my hair color may put me at risk--is that me being insane, or is it more insane that nobody's ever connected the dots before this?

Anyway, I'm hanging in there, but not happily. There's a cloud over me, a big dark glutenous mass of a cloud.

Thanks again for listening.

Ruby



Ruby - I'm a very similar situation to you right now. I'm fairly sure at this point that I have a gluten problem (though, the blood tests I had were negative) and I'm counting down the days until my endoscopy (39 long bloaty days to go).

I also put together a bucket list of my favorite gluteny foods, partially to have them one last time and partially to feel like I have some kind of control over the situation. Right now, I am not eating gluten at breakfast or lunch, but making sure to eat it for dinner everyday. That way I pay close attention to what I eat and how it makes me feel. Also, I have less of the brain fog and other distracting symptoms during the day when I need to focus at work. I've found that when I have something I really love and was certain I was going to miss (like jalepeno cheddar bagels) and then feel terrible after eating them, I feel much better about the idea of giving them up. Plus,since I'm only eating gluten one meal/day it's much easier to observe the type of reaction I have to them.

You're definitely not alone. Just keep thinking about the light at the end of the tunnel, where you get to start healing and those symptoms start slipping away...
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Gluten free since December 2012


#14 mushroom

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Posted 18 November 2012 - 07:31 PM

...is that me being insane, or is it more insane that nobody's ever connected the dots before this?


Sadly, doctors receive no training in connecting dots (not even as children, I believe :P - they are too busy playing doctor!). They are trained to look at symptoms in isolation, and then trained by the drug companies to look up a drug that will treat that symptom, regardless of its causation. The more symptoms, the more drugs you take, the more doctor visits you make, everyone's happy (even the pharmacist) except the patient.

I like Kat's approach to her final gluten eating. That way she can associate gluten with feeling bad and will feel better for not having it. :)
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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

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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

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#15 rubes

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Posted 21 November 2012 - 11:50 AM

I was so worried today that I wouldn't be taken seriously. And I have to credit my new doctor--that did not happen.

He ordered a celiac panel, an endoscopy, and a CT scan, along with a few other blood tests. He ordered the celiac test before I menitioned it, due to my Irish heritage. I will be done with all of the tests in two weeks! That is so much faster than I thought it would happen. He also prescribed me meds to take three times a day, dicyclomine. This has been helpful--the ER gave it to me, too.

Either way, I am going to quit gluten for awhile (possibly forever) once the testing is done. I can't thank you all enough for your knowlegeable perspective these past few days--it has allowed me to feel like I was learning something, at least, in the time that I could do nothing about my situation except wait. There's more waiting to come, so I'll probably be around. :)
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