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Observations We Can All Relate To...

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Posted 01 June 2011 - 06:35 AM

It does get better.

The first day I realized that what was actually making me sick for 48 years was "wheat" I had several leading emotions: Mad that I was diagnosed with MS rather than celiac. Sad that I had been sick my whole life and thus probably lived a less exceptional life than I could have. And then a wave of relief. I couldn't believe all I had to do was to cut something out of my diet and I would be free! It isn't quite that easy, unfortunately. Giving up wheat for good is a hard thing to do...but it does get better.

Thank god for gluten free pancake mix! If I had to eat one more bowl of Corn Chex for breakfast, I think I would have stopped getting out of bed.

Grocery stores are getting better. My grocer has agreed to stock a few more things for me. Gluten awareness is really growing, but we have a long way to go.

I usually get glutened when I'm not thinking. This new awareness takes time to develop. I was making a regular cake the other day, and without thinking, took a lick of the batter as I'd been doing for 48 years. Or, I popped a wheat cracker in my mouth as I was making a cheese tray. Those things we used to do "automatically" are the often the last things to go on a gluten free diet. I have to remember to stop and think before I eat---

Food is harder to find. I'm an international tour director who often eats out three meals a day....I have to search hard for food I can eat which takes up time and energy---that I often don't have.

I realize now that my body often gave up wheat voluntarily---as if it had a secret wisdom. I seemed to avoid wheat on some level before I even knew I was a celiac. So, giving up wheat wasn't that hard for me. What do I miss the most? Hotdog buns. (Real ones). And I miss eating without having to read a label first.

I laugh now when I think of how many waitresses I've made go into the back to bring out a big tub of salad dressing or some other food type so I could read the label. The new normal is sometimes ridiculous--but humurous.

It's been absolutely amazing to me that for the first time in my life, I no longer have acid reflux. It's wonderful to drink orange juice and lemonade again! I've been able to add a few things to my diet rather than avoid them. There are some blessings!

I run into all kinds of people who are celiacs now. It's fun to compare notes.

Gluten free beer is really good. I think it tastes better than regular beer. It's widely available too, which shows you how much better the marketplace is getting.

I'm sorry..but I've yet to find a piece of bread that comes close to regular bread. I've given up sandwiches.

I'm not eating as much..which really isn't good for me. You go through this confusing time in which you're not sure what to eat, and you haven't established a regular routine. This is that "in between" time and it isn't easy. You just have to keep working your way through it.

My kids like some of my gluten free food, which I have to shoo them away from. Too expensive to share! But they're cute. They often bring home products they find for me to try.

I live in a coastal town and I miss fried clams. And clam chowder. I'm trying to make some of our local restaurants aware that it's just as easy to use corn starch as a thickener as it is flour.

I have days now where I feel like a "regluar" person...plenty of energy and I can go all day for the first time in my life.

I was mad at my Mom for a few weeks for not acting on some of my symptoms when I was young. (Delayed period, very thin, fatigue, heartburn by the age of 8, etc.) But I realize it would have been impossible back then to have cornered this..... Still---I struggled at school, and had a lot of other problems that could have been easily fixed.

I'm already pinpointing other people in my family who probably suffer from this and don't know it. I'm amazed at the lackluster reaction I get when I share my diagnosis with them. A celiac soon realizes how un-interesting their condition is to everyone else.

I realize my tolerance to alcohol has changed...and my immune system seems a little sluggish as I transition to a new normal.

I hope some of you are nodding your heads as your read this..

Please add some of your own observations...
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Posted 01 June 2011 - 07:35 AM

In my case I think the disease set in about 10 years ago. I too feel like I missed out on a chunk of my life but on the bright side I now feel like I have life! I was very depressed and had awful brain fog. I also developed arthritis. I am now happy, clear headed and I can get down on the floor without creaking. :)

I haven't had a single dizzy spell since going gluten free. I haven't had to take a moment to process the object in front of me since going gluten-free. Example: I'm a cashier before going gluten-free I had a few times when I was handed money and my brain just couldn't process what it was. I'm sure the customers thought I was just some stupid girl who didn't know how to make change but in reality my brain wasn't even processing the object as money. After a few seconds I put it together, still it's an awful thing especially when you have someone looking at you with the "what a moron" look. In my humble opinion a good example of "judge not least you should be judged."

I had a lot of neurological issues. My Dr was treating me for migraines when he finally put it all together. Personally I was/am thrilled with the diagnoses. Proud my MD figured it out. It's not easy by any stretch but it is great to know it will get better. :)
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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown



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Posted 01 June 2011 - 07:57 AM

I really like this post!

To add my own observations:

I nearly shot my dad when I was diagnosed and in trying to cheer me up, he said "it's just a diet change." Now I am grateful that "it's just a diet change."

My alcohol tolerance is crap too.

I am grateful that the "starving because I am afraid to eat" phase is largely over.

I too, am grateful for the increased awareness and increases in available products. When I was diagnosed it never stuck me that products would get better, and thank God they did.

I am grateful for having a supportive family, group of friends, and boyfriend. People do listen and don't want me to be sick and unhappy.
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Diagnosed celiac 2002
Diagnosed lymphocytic colitis 2003
Casein free
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Posted 01 June 2011 - 08:13 AM

Don't give up on sandwiches. Try UDI's bread
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Posted 01 June 2011 - 09:12 AM

Don't give up on sandwiches. Try UDI's bread

I do have UDI's bread..but I don't know. There's something un-bready about it. I hate to sound like a whiner, but think back to those peanut butter and jelly sandwiches with that soft white bread that tasted almost like cotton candy...like Sunbeam bread. That's the only time that I miss wheat the most. Or a hotdog bun---a seriously good hotdog bun. I realize now that some things just aren't as good without the bread----that the bread was a big part of why it tasted the way it did.

And yes, I know what you mean about the brain fog. I remember one day last winter I was so brain fogged I really gave rise to the thought that I was losing my mind. It was horrible. I'd give up peanut butter and jelly not to feel that way again!
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Posted 01 June 2011 - 09:17 AM

Sometimes things like gluten-free bread & pasta gets better the farther you are from having the "real" thing. I never liked white bread. I like the CAnyon Bakehouse San Juan 7 grain bread. It tastes like a whole wheat kind - not soft & mushy.
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Posted 01 June 2011 - 10:35 AM

OMG, the brain processing! That part is just awful, isn't it? My daughter and I both get this, and you should see when we've both eaten the same food and got glutened - we look like two confused drunks having an argument about two different topics at the same time, LOL.

The scary one for me was driving somewhere and suddenly I wouldn't know what street I was on, or where I was supposed to be going, and couldn't remember who was in the car with me until I checked. That started happening a few months before I was diagnosed and scared the crap out of me! I was thinking early senility or alzheimers or something, I swear to god.

Changing my diet was a MUCH better diagnosis than that, thankfully!

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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive



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Posted 01 June 2011 - 10:42 AM

I don't care for Udi's either. I like Schar's Dinner Rolls for sandwiches. I slice them, butter them and "toast" them in a skillet......a little more effort, but they are really good. I like the texture of them better than Udi's. Kinnikinnick hamburger rolls are good too. This doesn't solve the PB&J problem, but I don't like those anyway. B)
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Posted 01 June 2011 - 10:54 AM

OMG, the brain processing! That part is just awful, isn't it? My daughter and I both get this, and you should see when we've both eaten the same food and got glutened - we look like two confused drunks having an argument about two different topics at the same time, LOL.

The scary one for me was driving somewhere and suddenly I wouldn't know what street I was on, or where I was supposed to be going, and couldn't remember who was in the car with me until I checked. That started happening a few months before I was diagnosed and scared the crap out of me! I was thinking early senility or alzheimers or something, I swear to god.

Changing my diet was a MUCH better diagnosis than that, thankfully!


OMG...You made me laugh. Love the part about two confused drunks.... I so get what you mean. For some reason, whenever I ate pizza I'd get really bad gluten brain fog. It was always worse with pizza for some reason. I remember once I was driving home from work, I was supposed to meet someone at an intersection to drop off paperwork and I just whizzed by. I was having enough trouble getting home, much less remembering an errand I had just promised to run five minutes before on the phone.

When it got really bad for me, though, was a day I was sitting on the couch and I literally was so brain fogged that I could barely think. I was beyond functioning normally at that point, and I couldn't see my way through the next moment. It was as bad at that moment as it had ever been--and still not knowing why was terrifying. At one point in my life, I sort of got used to the idea that I would die young and would do so never knowing why. What a horrible thing to have to think. This is the point some of us get to in this disease--before diagnosis--and it's truly, truly sad.

I often wonder how many people are out there going crazy at this very minute and not even knowing why. And that something as simple as throwing away a loaf of bread might save them.

As great as it is to have the brain fog behind me, I do feel so sad for all the people in the world who are experiencing it right now and have no idea why....
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Posted 01 June 2011 - 04:04 PM

The first time I glutened myself was by tasting a piece of normal pasta. I was stirring the pot, thought it was done, and...tasted it.

I've also kinda given up on sandwiches as I grew up on a very particular type of homemade, 1970s whole whole whole wheat bread. As an adult I leaned toward dark german rye breads.

I've just been rolling my fillings up in a blanched collard leaf. It would work if you were a peanut butter and pickle eater, but perhaps not so much with the jelly... honey might work though.

Rudi's Cinnamon Raisin is pretty good for buttered toast, though. And the schar dinner rolls spread with nutella make me feel like I can sort of have a chocolate croissant. kinda.

Anyway, I'm so freakin' happy to weigh 115 lbs. I actually have body fat again. Who would think I would be thankful?

Acne is also much improved, but I think that is more closely linked to dairy (see above notation about nutella... must make my own, dairy-free).

NO MORE ARTHRITIS. Yes, it is weird for a mid-twenties woman to develop arthritis. Someone else want to point that out? Wearing wrist braces and constant icing is a bad sign without trauma.

I listened to a webinar today, and one of the points was a challenge: eat no refined grains for one whole day. I often go days at a time without eating any refined grains, as my refined grain options are more limited. Basically, pasta ($$ treat now), what I bake (high time expenditure), and white rice. I no longer pick up a cookie to go with my lunch, or have an egg & cheese on a "multi-grain" bagel on my way to work.

On the other hand, I eat more chocolate. But perhaps that is a good thing?
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?



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Posted 02 June 2011 - 05:16 PM

Great post! I was nodding :-) It really does get better.

OMG, the brain fog. I got glutened the other day and my brain just went to mush. I spent all afternoon trying to remember what I was doing, it was like my head was an empty cavern. I used to feel like that all the time.

My alcohol tolerance got better. Or rather, it's pretty much the same but I don't throw up the next morning. I used to eat dry toast and lots of crackers to 'sop up' the alcohol and all I did was throw up all day. My poor body, it was probably feeling slightly delicate from the alcohol and there I was torturing it with massive doses of gluten. Now if I have a few too many drinks I just eat a regular breakfast and have extra water and I feel fine (disclaimer - I drink very rarely, but when I do tend to make a big night of it).

I've pretty much given up sandwiches too. I love Udi's, but it has to remain a 'on visits to the US' treat.
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Posted 02 June 2011 - 05:33 PM

Observation from me... life has gotten considerably better over the past 7 months. I feel better than I have all my life, who knew feeling sick and tired all the time wasn't normal. It was my normal for 53 yrs. Now I have energy, I'm doing better at work, found my sense of humor again :rolleyes:

As for bread, I will use Udi's white (allergic to flax so can't do any of the whole grain kinds) and if I toast it lightly it is OK for a sandwich. Not satisfying but fills the hole!! I do like the Kinnikinic (sp?) hamburger buns, I just discovered them and I must say the first burger on one was fabulous. All in all, bread isn't my friend anymore which in itself is not a bad thing really.

Food in general, eating at home is a breeze, whole foods, fruit, vegies, organic meats, some peanuts and cashews (the only nuts I can eat), Chobani yogurt and Tinkyada brown rice pasta. With these simple ingredients I can make a ton of great meals. I've learned to bake with gluten free flour and my family chocolate cake recipe and chocolate chip cookies are wonderful.. Eating out is a challenge but after 7 months it's more like an adventure!! Authentic Mexican has never done me wrong and we have tons of places here!!

All in all, I'm feeling so much better, I am enjoying life regardless of the food limitations and I don't feel like I'm going to die for no apparent reason anymore. I've had it out with my doctor about why it took all of them so long to figure this out and even got an apology from him.

Past is the past, can't change it so not dwelling on it... off to the future... what ever it holds!!
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Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010



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Posted 02 June 2011 - 07:27 PM

I agree when I was diagnosed I was upset that I suffered for years unnecessarily. I was also sad for those years that were lost. I am frustrated that I have to wait for healing to come. It is nice that it all I have to do is avoid gluten. I do not mind not having gluten though finding alternative, safe, not cross contaminated foods can be a pain at times. Though I am grateful for the progress and popularity of gluten-free foods because that makes life easier. I have found it easy to adapt I do not find that I had old habits that are risky for me. It is annoying that I have to obsess so much about food checking labels and figuring out my safe options at restaurants and when I am a guest. I do not want to be offensive to people especially since they just do not get it, but I am not going to politely eat what will make me sick. I really hate that little bits of cross contamination can make us so sick. I wish I had secret wisdom to avoid the foods I am intolerant and allergic to instead that is 98% of what I ate. I do not really miss wheat I am cool with gluten-free alternatives. I do miss cheese especially since I found out I cannot have yeast and the cheese alternative I liked and could eat (Daiya) has yeast. Sometimes I laugh about the craziness of checking labels. I really appreciate people especially servers who get it! Thanks a million! I had not heard of an in between time but I think that is where I am where I am trying to figure out what I can have since we threw out the rule book and broke the mold. Some of my family buys me things to try that seem safe. I feel bad when I read the label and discover an ingredient I cannot have or made in a shared facility/ equipment. I love the effort. Thanks family, friends, and boyfriend! It sucks that gluten-free stuff is so pricey. Still trying to get to feel like a regular person. I wish someone would have caught it sooner. I can totally fault my parents at times they listened and other times they thought it was my imagination or stress or something. I try to tell my family, but they do not want to hear it. They are cool with me going gluten-free and feeling better but they do not want to hear about how being gluten-free could make their lives better. I hope they try someday because it would totally improve their quality of life. I think some people are interested in celiac's/ gluten intolerance. I would rather bore people for a few minutes just to spread awareness and hopefully spare someone what I went through.

I wish going gluten-free, casien/dairy free, etc helped me but if anything the brain fog and memory problems and depression seem worse. yay to the doctors that figure it out. i am scared to eat but super hungry. i eat a lot of vegetables some fruit and meat.

i agree the gluten or something seems to give bread a distinct texture. i did not eat it for the texture or taste, so i cannot say i really miss it. though i see sub and sandwich commercials and think oo i want one, but then i usually get over it.

brain processing and brain fog are horrible! i agree i feel like the two confused drunks. uh. i also thought i would die young. "nice" not to feel alone, but what a horrible thing to think especially when you are so sick and no one seems to know what is going on. i wish i knew why my brain fog got worse. i do not cheat or have any desire to but maybe it is CC though i do not get how since i eat so much unprocessed raw food.

it is so great to see symptoms to disappear. pain, acne, warts, skin conditions, headaches, TMJ, constipation, etc. yeah gluten-free store bought stuff is a treat financially. making homemade gluten-free stuff is a time luxury.

I liked the Kinnikinic donuts. I cannot have them any more because of the yeast. I gotta find some recipes so I can make stuff that is ok, safe, and suited to my tastes.

wow that ur doctor apologized. i would like to know how they missed it and for them to consider it with other patients so people do not have to suffer like this.

i hope to spread the word. to find what works for me. to connect to other people. to feel like i have power and control over my life. to have freedom, health, and happiness.
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Misdiagnosed - IBS, TMJ, eczema, KP, etc
Real Diagnosis - Gluten & Casein (milk protein) Intolerance, Cross Reactivity to Yeast & Buckwheat
Recommend: Tests: Entero Labs Gluten Sensitivity & Gene Testing
Books: * Allergies by Dr. Carolee Bateson-Koch (digestion, yeast, parasites, body pH...)
* Why Do I Still Have Thyroid Symptoms by Dr. Datis Kharrazian (gluten & autoimmune problems)
* Change Your Brain Change Your Life by Dr. Daniel Amen (foods, supplements...)
Supplements: * digestive enzymes, * probiotics (dairy free - Klaire Labs - Pro5)



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Posted 03 June 2011 - 12:41 AM

I can relate to this,
before i even got diagnosed, i was so paranoid and so frustrated it was to the point of "why bother?"
then once they diagnosed it me it became "that sucks"
then more or less of the why bother, when i realized i cant eat a damn thing,
but now its getting much better, im eating halfway decent, lots of potatoes i can say that,
but i got my job back (yay!) and as soon as i start getting paid, im paying off some owed debt to the family and then hitting a gluten-free store,
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