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Mr. Pep'r

What I've Learned Since 2007

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Here is what I have learned so far since being diagnosed with Celiac Disease back in 2007.

First let me say that my GI health has been a rollercoaster since going on a gluten free diet and to say the least it has been physically and mentally draining.

When I was first diagnosed I immediately stopped the consumption of gluten, and believe me that was painful, because my last pizza was Dominos that I had quickly eaten for lunch. Looking back, I should had my favorite New York Pizza with a six pack of Bud, but I digress.

Within a day or two I was feeling wonderful and had experienced a 100% improvement.  So I began to think this was going to be easy!  I’ll just eat the “naked burritos”, have the cheese steak with no bread and I’ll just get the cups of ice cream.  And that worked, but for only a few months, my symptoms started to make a return.  So, there I was left trying to figure out what it was that made me sick, what did I ingest, where did I ingest it.  So I started with obvious, no more fast food without the bread, no more ice cream where the scooper was also used and stored with gluten products.  And again it helped, but the symptoms came back once again.  That is when we realized we had to start replacing most of our old kitchen utensils and we even changed our dog’s food that had wheat and barley in it.

With all these changes, I was still getting sick.  We just assumed it was the food that I was eating while dining out or food that was labeled as gluten free but maybe it wasn’t.  This was getting very old!

An opportunity for my wife came up that required a move to Houston.  Now I/we had to start all over again with finding safe places to eat, the “Find Me Gluten Free” was a big help.  But sadly, the City of Houston has zero dedicated gluten free restaurants that we could have dined, on the other hand there were dedicated bakeries, which apparently there’s NO shortage of.  One cannot live on cupcakes and brownies alone!  There were a handful of places that had high reviews with gluten free menus, so I’d rotate between the two or three on a weekly basis.  But I was still getting sick, albeit not nearly as bad pre-diagnosis days, but still I wasn’t nearly 100% and it was starting to take a toll.  When I was exposed to minor cross contamination I would experience malabsorption, leaky gut and have the feeling I was never done clearing my bowls that would leave me needing to clean up in a shower.  It was NOT FUN!

This time spent in Houston gave me an awareness that cleared up a ton of confusion with my disease.  While dining at one of the so-called safe restaurants that understood gluten free and had a gluten free menu, I was given rice that was not supposed to be served with my selection.  It was rice pilaf!  But it wasn’t until I ate 2/3s of it that I learned what it was from the server.  Well I thought, here we go… I am about to get sick.  Lucky it was a Friday night with nowhere to go.  That night went by without incident and to my surprise I didn’t get sick, which could be from either end depending on the mood of my body at the time I guess.  The next morning I woke up, and again I wasn’t sick.  Could I not be that sensitive to gluten anymore?  That day I continued eat meals at home which were safe and gluten free. Later in the afternoon I started noticing a headache that turned into a really bad one within an hour, that Advil couldn’t get rid of.  Now I was starting to feel really bad.  Well, maybe I was hungry?  Since it was last year’s Memorial Day Weekend we decided to have the traditional hotdog and bun, in which both were 100% gluten free.  Shortly after eating dinner my discomfort became worse and nausea started kicking in.  About 4 hours after eating I was violently ill for about an hour and I couldn’t keep my dinner down.  The meal the night before was to blame.

The funny thing is, before that weekend’s events I would have blamed the meal I just ate!  I would have never have eaten Udi’s bread again or the hotdogs that had gluten free on the package, because it was my belief that the meal I just ate was the meal that had gluten, and was the meal that had gotten me so sick.  See, this was the first time in 7 years that I knowingly put something in my body contained gluten.  All the other times I just assumed it was the last meal eaten.

Fast forward to my latest bout with gluten.  We have since moved from Houston to South Florida and I am currently within a stones throw of three dedicated gluten free restaurants and I couldn’t be happier!!  The house we purchased is a project home, there are boxes everywhere and since arriving the last week of March I have literally dined out every single day.  And for the first time my GI health has been noticeably better.  But in the middle of these past few months I decided to get a meal at PF Chang’s, you know to change things up.   As we all know PF Chang’s has a gluten free menu and they take all these extra precautions to ensure they’re providing us with a safe meal.  Keeping in mind this was the middle of the week as well, so the weekend craziness wasn’t a factor in their kitchen.  The meal was served on their marked plate, so there was nothing that would make me think I wasn’t getting a gluten free meal.  The night and most of the following day went by without any issue until late in the afternoon when I started getting one of those headaches that Advil couldn’t help.  Maybe it was all the work I was doing, maybe it was the construction dust, or maybe it was just the heat.  I ate some dinner thinking maybe I was just hungry and a few hours later, like clockwork, I was severally sick.  

In both cases the following day I felt like I was hungover or dealing with flu like fatigue, I felt drained.

Both cases I would’ve blamed the meals I just ate before I threw up, but clearly with all the facts present this was not the case.  Now, whenever I get sick again, I will not look towards the meal I just ate, but rather the meal I had the day before.  And when you think about it, Celiac Disease over produces antibodies and I would suspect that takes time for our bodies to do.  At least time for our bodies to get to the point of rejecting the food.  I am not a doctor, just someone who has seen the bottom of toilet bowls way too many times.

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many of us have delayed reaction to being glutened - mine is 24 (starts with a headache) to 48 or so hours after ingestion.  then all the lovely symptoms return and it takes me 14 days for my body to go back to 'normal' - keeping a food journal will help you figure out where you have consumed the poison gluten.  like you, i was cutting out safe food just because it was the last thing it ate:  not true.  once i figured that out, i could pinpoint where i accidentally got gluten (mostly restaurants.  99 percent, seriously, ya can't just eat anywhere.  it's a pain to be so picky, but it is what it is)

 

lolz and i *like* seeing the bottom of the toilet bowl vs. not -  it's when i can't is when it's a problem ;)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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:)  Sounds like you're doing well with your diet.  

 

You are absolutely right about reactions.  Even the experts agree that a celiac reaction can begin within a minutes to  72 hours later, and that's just the beginning.  It takes most two or so weeks to get it out of the system even if the obvious symptoms have disappeared.... Diagnosing celiac disease would be much simpler if we all had the same reaction within the same same time frame, wouldn't it?  ;)

 

Thanks for sharing.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I have seen rice pilaf on a menu but never eaten it. Just curious what is in it?

Thanks for the info about delayed reactions. My most recent toilet and trash can visit may have been exactly that but I didn't think about that.


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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Fran many rice pilafs have a browned pasta in with the rice. Rice-a-roni is a rice pilaf. If you see one on a menu do ask what is in it. 


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Thank you for sharing. It's always insightful to hear what other people go through. My own reaction is very fast. I feel is normally within 20 minutes to an hour and then after that first awful storm of affects I get tge lingering sickness for about two weeks. :/

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Thanks everyone for taking the time to read my post, hopefully someone has read it and it may have cleared up some confusion, since Celiac Disease is not a 'one size fits all" kind of thing.

 

 

I have seen rice pilaf on a menu but never eaten it. Just curious what is in it?

Thanks for the info about delayed reactions. My most recent toilet and trash can visit may have been exactly that but I didn't think about that.

 

It is also my understanding this dish is usually prepared with a chicken or beef stock that most likely contains gluten.

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[Rice pilaf] is usually prepared with a chicken or beef stock that most likely contains gluten.

"Most likely" is a bit of a reach in the context. The reference was to a menu, and if the restaurant makes their own stock, there would be no reason for them to extend it by adding flour. It is possible, but not very likely. Dehydrated stock products that you buy in the grocery store may have wheat added as a binder in the powder/cubes. Read the label. Liquid concentrates are more likely to be gluten-free.

Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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