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GottaSki

Member Since 13 Mar 2009
Offline Last Active Private
*****

#928092 Gut Healing?

Posted by GottaSki on 21 August 2014 - 10:00 AM

Hip hip hooray!

Do go easy, but enjoy a few treats until you are sure.

Happy belated first silly anniversary :)
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#927785 First Out-Of-Town Trip Since Diagnosis. Big Girl Pants.

Posted by GottaSki on 17 August 2014 - 09:52 PM

Well...I say cry, then adjust ;)

At least that's what I did ... Big girl pants intact.
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#927466 Buying Beverages From A Restaurant

Posted by GottaSki on 14 August 2014 - 02:32 PM

I use straws...well except for coffee cups with handles.

My husband was actually more worried about staff with gluten covered paws handling my drinks...i like him to enjoy his meals when we dine out and not worry about me....so I use straws :)
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#927451 So Tired, Can't Stay Awake.

Posted by GottaSki on 14 August 2014 - 12:30 PM

When i did a strict elimination diet geared toward Autoimmune Disorders i found that legumes are like sleeping pills for me.

 

Beans, Peas, etc make me very sleepy.

Peanuts make me tired but also very emotional.

 

Perhaps there is something besides gluten causing you trouble.


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#927086 Gluten-Free Eggs

Posted by GottaSki on 11 August 2014 - 06:22 AM

I read Irish's responses differently. As arguably one of the most sensitive individuals on this forum - have become what we joked about for years "BubbleGirl"....

For over four years I have understood that many of the items I thought I was getting gluten from cc or other sources in actuality I was reacting to something else. Were these reactions triggered by celiac? In a way, my digestive system was destroyed from decades of undiagnosed celiac disease with mast cell disorder.

Every person with Celiac Disease needs to avoid all gluten as ingesting it does start the autoimmune cascade. I would argue that this cascade is different in each individual because we are each unique.

For me I much prefer language that unites us as those with Celiac Disease....there is enough trendy nonsense out there causing us problems.

Like it or not....many newly diagnosed or folks just starting to learn the facts about celiac disease are not celiac.com forum savvy enough to understand when someone is speaking as a "super-sensitive" which is why many of us try to keep these threads understandable for folks new to all things gluten-free.

At any given time there are between 400 and 1000 guests viewing the information in these posts. Now think about how many folks become active here. I have seen mainstream media quote posts on this forum. These are just a few of the many reasons I always answer folks from the facts known of celiac disease today and then from my own personal autoimmune puzzle.

I am no longer a moderator, but would call this thread done if I were.
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#926909 The What's For Dinner Tonight Chat

Posted by GottaSki on 09 August 2014 - 04:43 PM

Safe travels Irish! Crossing what I got for your gastronomic adventures :)
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#926780 Desperate For Answers! New To The Rash "party"

Posted by GottaSki on 07 August 2014 - 10:43 PM

Thanks for all the great advice!! I go to the dr tomorrow to review blood work, and will go from there. Thanks all!!


Great.

Always ask for written or electronic copies of testing.

It can help you now....and trust me, it will help in your future health needs.
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#926773 Recent Celiac Diagnosis And Questions

Posted by GottaSki on 07 August 2014 - 06:53 PM

Welcome!

Those tests are quite clear. The DGPs are extremely high and the endomysial titer indicates damage to the endomysial layer of the small intestine ... in simple terms - damage caused in Celiac Disease.

I am curious, did your doctor run:

Tissue Transglutaminase...also known as tTG (both IgA and IgG)?

Do read the Newbie Thread CyclingLady linked for you...it contains loads of fast forward info.

Let us know if you have any questions...the transition is not easy...but well worth the effort :)
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#926770 Desperate For Answers! New To The Rash "party"

Posted by GottaSki on 07 August 2014 - 06:33 PM

Saw several drs and derms in the past weeks. All claim its contact dermatitis and that it will just go away. Its just getting worse as the days progress. But the itch has really calmed down. Still itchy but I can resist the itch now. In the San Diego area, major medical research hospital UCSD is in town.

Well...it helps when I read the entire thread. I live in San Diego and know UCSD very well.

You want to see Dr. Sheila Crowe, the director of UCSDs celiac center. Ask to speak with her assistant or advice nurse. The normal receptionist does not understand the need to fast forward possible DH biopsy.

If you run into the usual "next appt is in three months" ... Send me a PM and I'll see what I can do.

Edited to add:

http://doctors.ucsd....&specialties=16

Hang in there :)
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#926658 Gluten-Free Eggs

Posted by GottaSki on 06 August 2014 - 06:48 PM

The incredible edible egg! Recently got them back in moderation...so thankful to have them back in my safe foods. Never removed due to gluten...eggs are gluten-free and one of the best portable protein sources ever!
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#926576 Are You Happy?

Posted by GottaSki on 06 August 2014 - 07:18 AM

Daughters house is big and the kitchen is completely gluten-free....and she has horses for us to ride :)
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#926261 Genetic Testing Results

Posted by GottaSki on 03 August 2014 - 03:56 PM

He probably ordered the tests because your other tests were inconclusive.  From what this says, there is a very slim change you have Celiac or will develop it later.   That is good news on one hand, but leaves you without a diagnosis.  Perhaps it's time to move on to a different clinic to see if they have more ideas, maybe a place like Mayo that will look at your entire picture at one time vs seeing an allergist for this, a GI for that, another dr for something else without getting any collaboration??


She has a positive DQ2 which means there is a possibility of celiac disease.

Hayley...how long ago did you test negative?
Was a complete celiac antibody panel done...including total serum IgA?
Have you been tested for nutrient deficiencies?
Have you removed gluten for any amount of time?
Do you have the pathology and procedural reports from the endoscopy? These can provide helpful information.
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#925113 Meal Planning For The Newly Diagnosed- Challenge

Posted by GottaSki on 24 July 2014 - 08:18 AM

I'm in Michigan. :)

 

Part of my frustration is that I have friends who seem to think that eggs, chocolate, vinegar, and canola oil are bad for us. I'm not going to give those up at this point. Plus, there's so much conflicting information on it. Some friends claim that eggs raise your cancer risk and I've heard of a study that claims that they do the opposite.

 

 

California reporting in....

 

Here is my rule...anyone that does not have to live with either a true allergy, severe intolerance or celiac disease is not allowed to suggest what foods are good or bad...I find they are usually the first to break their own rules because their bodies do not punish them for eating "just a little".

 

and I never act on the advice of folks even with those three conditions without a bit of research and listening to my own body.


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#923714 Should I Get Tested?

Posted by GottaSki on 13 July 2014 - 06:33 AM

Hello, I was hoping that someone here could offer my wife and I some help. My wife has been reluctant to get tested for Celiac disease largely because she's been steamrolled by her doctor who has insisted that what she has is IBS. I am admittedly not a doctor, but her symptoms only crop up when she accidentally eats gluten and they don't seem to fit with IBS. She has been gluten free for 2 years (after an elimination diet suggested that gluten was an issue) but sometimes something sneaks through by mistake. I have done some research and I think that she may, indeed, have Celiac but I was hoping for some guidance from people who really know this disease.

 

Her symptoms after eating gluten include:

 

Stomach cramps

Fogginess

Feeling tipsy (without alcohol)

Constipation alternating with a much more urgent need to go

Feeling like her body isn't attached to itself

Tooth sensitivity

Fatigue

Headaches

 

Additionally she recently tested positive for ANA which at least one study I found indicates might be a Celiac symptom. Her most recent bloodwork tested negative for Celiac, though as I mentioned she has been gluten free for about two years. Before she went gluten free she was diagnosed as anemic.

 

Should we press her doctor to look closer at Celiac (or find a new doctor)? From what I understand this involves eating gluten for a number of weeks to see if she tests positive.

 

She is really at the end of her rope and there are people in her life that essentially tell her that her symptoms are all in her head - Celiac or not, they clearly aren't. Thank you very much for any help you can give us.

 

Her symptoms are not in her head.  They very well may be in her gut.

 

I would vote for complete testing....I always do ;)

 

The reasons are many...but for your wife...finding the source and obtaining a diagnosis does a great deal to help take control of her health care.  It is unfortunate that so many of us are dismissed as stressed, hormonal, depressed, overworked, etc -- instead of running a simple blood panel.  I was told I was in perfect health because all the tests many doctors chose to run were all negative except for anemia for my entire life and low Vitamin D for three decades.  If I could talk to my younger self -- well, I can't -- what I can do is shout from the rooftop...do not let doctors, family or friends dismiss what is going on in your own body.  Demand testing continue until doctors find the reason for her symptoms, whether celiac or not.

 

Thank you for being her advocate...it makes all the difference to have someone in your corner when you simply have no fight left in you.


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#923422 Should I Cheat On My Gf Diet?

Posted by GottaSki on 10 July 2014 - 05:26 AM

Thanks again, and I' m sorry if that question offended some, but I am sure I am not the only person that wonders these things, No this isn't a Fad diet for me. I have probably had this disease for 10 + years! but I was only diagnosed 9 days ago. I finally got so bad that I went to a
Gastrointerologist, and he had me tested for celiac's, the tests came back positive 9 days ago.
Anyway, I'm going to try my best, and thank you all for the wonderful advice!

 

In my opinion you owe no one an apology.  You asked an honest question that has a simple answer.  Since you are diagnosed with Celiac Disease you must do everything you can to avoid gluten in this gluten filled world.  Once you learn, the world doesn't seem gluten filled...but the learning curve is tough.

 

Hang in there :)


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