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I Cheated Today! :(


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#1 Laurelf

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Posted 27 November 2009 - 02:59 PM

I haven't had a pizza in over 2 months. We had some friends over decorating our tree and we decided to just order pizza instead of cooking a meal. I wasn't going to have it, but once I smelled it, I couldn't resist and had two pieces! About an hour later, I got some gas pains and heartburn (bearable) and my stomach got bloated. Well, my friend and my husband are saying, "wow - you can cheat. It's not that bad." I haven't had my whole litany of reactions - no DH yet although my stomach is itchy - no diarrhea. It's only been about 4 hours so maybe I will get other problems as the time goes on. Maybe it will take longer for me to react because I've been gluten-free for so long?

So not only do I feel guilty but I feel like I've lost all my credibility with going gluten free since this "test" wasn't bad. Here is another time when I wish I had an "official" diagnosis so I can tell my hubby that I do in fact have a problem. What's still so confusing is that the biopsy gave us "wiggle room" by saying either celiac or duodenitis, so my husband clings to the possiblity that I just had a bad infection before that is now healing and I should therefore not have to be gluten-free all my life (despite other evidence like the celiac gene, flattened folds from my endoscopy, elevated lymphocytes, igA in my stool and improvement going gluten-free).

I do have an appointment with a celiac specialist in December. But I'm finding it so hard to convince everyone that this is real. Of course, it doesn't help when I sabotage myself! Was is this so hard? With my son, he has a clear diagnosis of food allergy and we don't question whether eating the food will make him sick or whether it's ok to cheat. With him, it's strict avoidance and everyone's on board.

And I've been so good, too. We went out to dinner for Thanksgiving (I didn't want to) and I grilled the chef about the food, etc. I ordered turkey without stuffing and as I got half-way through eating, there was stuffing under the turkey - they just tried to scoop it off instead of making a fresh plate! i stopped eating and gave the rest of my plate to my hubby. I wanted to complain, but I didn't want to ruin everyone else's holiday so I went hungry. And then I blow it with pizza today! Happy Holidays, sigh....


Laurel
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#2 MySuicidalTurtle

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Posted 27 November 2009 - 03:05 PM

If you have Celiac Disease you do damage regardless of how severe or not your reactions are. You cannot even fully heal if you are cheating. Plus, it makes those around you think that your disease, if you have it, is no big deal. It is a huge deal.
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#3 GottaSki

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Posted 27 November 2009 - 03:09 PM

First, try not to be too hard on yourself. One slip does not ruin all you have accomplished. You can go right back to eating gluten-free. I'd say the reactions you did have are enough to know your body can't tolerate gluten.

Second, because celiac diagnosis is not always clear-cut it is easy for some (even husbands, family and close friends) to second-guess the diagnosis. I'd say if you have improved by eating gluten free that should be enough for anyone- unfortunately not always the case in the real world.

When you were diagnosed did you have a positive tTG IgA? If so, when that is re-done it should be significantly improved when re-tested. I went from a 24 to a 6 in 3 months. My B12, D, K, Iron, Ferritin, Zinc and Copper have all improved - just aren't quite up to normal levels as of 6 months gluten-free - am hopeful my 9 month check will have them all normal.

Good Luck and DON'T be do hard on yourself -- take a hot bath and remember how many meals you have eaten gluten-free!

-Lisa
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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 :)


#4 brigala

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Posted 27 November 2009 - 03:47 PM

I'm sorry. I know it's so hard, especially for people who don't have violent reactions to gluten. I hope you don't get too sick.

Be sure to tell your hubby how this little cheating episode made you feel, with the heartburn and the bloating, and any other symptoms that might crop up over the next few days. Maybe it will even help him understand when you say, "Yeah, I cheated, but it wasn't worth it and I can't do it again."

Take this as a learning experience, partly to gauge what your personal response to a serious glutening is. Keep checklist, mental or otherwise, of your symptoms. Fatigue? Joint pain? Dizziness? Brain fog? Bowel problems? In fact, these would be good to write down and take to your doctor next time you go. It might help aid you in the quest for a real diagnosis.

-Elizabeth
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gluten-free since mid-2007.
Symptoms: "IBS," chronic fatigue, chronic pain. 

Celiac is a family affair for us; my mom, sister, and one of my sons are gluten free. At least it makes holiday gatherings easier. 


#5 jststric

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Posted 27 November 2009 - 06:32 PM

Pizza is the one thing that I just die for, so I can certainly understand the weakness!!! I have never gotten an "official" diagnosis, but my hubs knows that I cheat when I do something like that. Extended family that we aren't around much doesn't understand as well, but they don't live around me, so it doesn't really matter to me that much. If I find myself "glutened" I take a double dose of acidophilus for several days and it does seem to help. If you can do dairy, just have some extra yogurt. I cannot, so I take supplements. It doesn't help the headaches or fog but it does seem to help some of my more aggravating digestive-tract issues.
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#6 Laurelf

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Posted 27 November 2009 - 07:35 PM

My TTGA blood test was negative, but I've read that people with early stages of celiac can have negative blood tests.

As the night has progressed, my pain has gotten worse, so I definitely know that eating the pizza was the wrong thing to do.

Thanks everyone for your support! It's nice to be able to talk to people who "get it."

BTW, Mysuicidalturtle - I love your moniker! I have a sulcata tortoise and we had box turtles, so I'm a big fan of torts. :D

Laurel
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#7 ravenwoodglass

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Posted 28 November 2009 - 03:11 AM

My TTGA blood test was negative, but I've read that people with early stages of celiac can have negative blood tests.

As the night has progressed, my pain has gotten worse, so I definitely know that eating the pizza was the wrong thing to do.

Thanks everyone for your support! It's nice to be able to talk to people who "get it."

BTW, Mysuicidalturtle - I love your moniker! I have a sulcata tortoise and we had box turtles, so I'm a big fan of torts. :D

Laurel


It is possible to have negative blood work and really be very sick not just in the early stages. Some of us just don't show up positive on blood work and those of us who don't can suffer for years if doctors rely only on them, like mine did.
I hope your reaction doesn't get any worse. Make sure you let your DH know how much pain your in.
I would pick up either some gluten free ready made crusts, like Kinnickinnick, or a box of Gluten Free Pantry's French bread mix, which makes really good pizza dough, and keep it on hand. That way when others are enjoying their gluten filled pizza you can safely enjoy one also. I always keep a package of the Kinni crusts in the freezer and some Hormel pepperoni and cheese in the frig for a quick meal when I don't want to cook anything. It is $10 almost for a package of four but when you break it down it is still less than $5 a pizza even when loaded with toppings. Sometimes I pig out and eat the whole thing myself but if not real hungrey I have half that night and reheat the leftovers for breakfast the next day.
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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)

#8 Laurelf

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Posted 28 November 2009 - 07:53 AM

[quote name='ravenwoodglass' date='Nov 28 2009, 03:11 AM' post='578175']
It is possible to have negative blood work and really be very sick not just in the early stages. Some of us just don't show up positive on blood work and those of us who don't can suffer for years if doctors rely only on them, like mine did.


This is one of the reasons why I'm finding a new primary care. My first one ordered the blood test and said that because it was negative that I was "crazy" for suspecting celiac. Luckily, my gi dr was at another facility and followed through with the endoscopy. I'm so sorry that you spent years suffering. It stinks that we have to be our own doctors.

Thanks for the pizza tip - I'll have to try it. :)

Laurel
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#9 GottaSki

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Posted 28 November 2009 - 08:16 AM

You can most definitely have a negative tTG IgA -- mine was only marginal after 43 years of gluten -- all of my children had negative tests, but each has different symptoms of celiac.

So sorry that you are feeling poorly from the gluten - what someone else said is important - let your husband know how this glutening affected you. This episode is all the confirmation you need of the need to live gluten-free!

Hope you are feeling better very soon.

-Lisa
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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 :)


#10 ravenwoodglass

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Posted 28 November 2009 - 08:56 AM

This is one of the reasons why I'm finding a new primary care. My first one ordered the blood test and said that because it was negative that I was "crazy" for suspecting celiac. Luckily, my gi dr was at another facility and followed through with the endoscopy. I'm so sorry that you spent years suffering. It stinks that we have to be our own doctors.

Thanks for the pizza tip - I'll have to try it. :)

Laurel


You definately have to try the Gluten Free Pantry mix. It makes a deep dish pizza so good I bet even your gluten eaters will love it. I usually refrigerate the dough so it is a bit less sticky, even then it has to be spread with a spatula but it is sooo worth the trouble. Since I live alone I usually devide it into two and freeze one. I thaw it in the frig for use the next day.

I wish I had been smart enough to figure it out. The doctors would tell me I should be happy I didn't have 'sprue' since I wouldn't be able to eat anything but never told me what I would have to avoid or mentioned gluten. Just get more fiber...ya know lots of shredded wheat etc. I was diagnosed with the help of a PT who nagged me for over a month to find an allergist that dealt with food intolerances. I found one who was far past the age when most retire, he actually took notes on an underwood typerwriter with carbon paper :D . IMHO and my families he literally saved my life. Of course I was then referred back to my celiac clueless GI doctor who made me severely ill because he demanded a challenge. I did one, at great cost to my body. I won't go into the gory details but when my biopsy was scheduled I wasn't even able to get off the bathroom floor to go to it. But he gave me my 'official diagnosis'.
  • 0
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)

#11 ENF

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Posted 28 November 2009 - 09:35 AM

I live in Brooklyn, where there must be more great pizza places per square mile than anywhere in the world, including one of the world's best (according to Zagats) just 15 minutes away from me - and I wouldn't even think of eating it anymore. I grew up eating at these pizza places, also high-gluten water bagels (that's actually what they were called in the bagel stores years ago), and it's been over for five years since I could have any of it, lol.

Instead, we make our own pizza with Chebe pizza crust bread and goats cheese. It's OK, and I don't get sick - not a bad trade-off, IMO.
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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#12 jabberwife

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Posted 30 November 2009 - 09:06 AM

I can understand about the "mild" symptoms at first leading you to believe that the "gluten" thing wasn't as "bad" as you feared. A few years ago when I first suspected gluten to be the enemy (after I too recieved a negative blood test - but my father, sister, and brother are all celiac/gluten intolerant). I went gluten-free (though not as carefully as I am now) and challenged, with little to no reaction.

Of course, several years later, I went through this test again, and this time went gluten-free for longer and challenged, and oh boy, I knew gluten was the enemy that time! (This was 4-5 months ago) Since then, I've been extremely careful. I rarely eat out and cook completely from scratch.

My husband, though supportive, has rolled his eyes in recent months when I've been nagging to keep him from cc'ing the butter, mayo, dishes, etc. My accidental glutenings had only occurred once or twice, and were so mild, I was thinking I was not that sensitive. But the other day I was careless - used the same spatula to transfer burgers onto our kids' buns for grilling a portobello mushroom for myself. THEN ate one of the other mushrooms from my son's plate (because he didn't touch it - and yum, portobello!), not even thinking about how he could have dropped crumbs all over it when eating his burger. And I was sick - not immediately, but the next day and a half were bad. That was enough to not only prove to myself how careful I need to be, but also to my husband. Working on getting my own mayo, butter, etc - just to make things easier.

Stick to your diet, and don't be afraid to mention something next time at a restaurant when they don't follow through with your requests. And don't beat yourself up on this pizza incident. Besides, for next time, you'll remember how bad that pizza made you feel. I've found Udi's sells pre-made crusts. I love to make my own, but these are great for last-minute throw-together pizzas. Also a good pita bread substitute. They sell them at our local Whole Foods - they're expensive, but worth it for an occasional pizza treat.

Good luck!
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