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Cara in Boston

Member Since 03 Feb 2011
Offline Last Active Mar 24 2015 05:21 AM
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Posts I've Made

In Topic: Should My Daughter Have A Biopsy?

13 March 2015 - 06:39 AM

I do think it would be great to have an actual, concrete diagnosis.  However, there is a chance you could go through all the pain and suffering and the biopsy could STILL be negative and that will not rule out celiac.  It just means the damage was not found, NOT that she doesn't have it.  The doctor could miss it, the gluten challenge might not have been long enough, (my doctor said 6 months eating gluten), etc. etc.  If she is told she does NOT have celiac (when it kind of looks like she does) then she might feel free to continue to eat gluten - even occasionally - and her health will not improve.

 

Some doctors won't diagnose without a positive biopsy.  Others will take into account family history, symptoms, response to the gluten free diet, etc.

 

Some schools, colleges, camps, will require an actual diagnosis in order to provide accommodations.  Of course, a diagnosis of gluten intolerance would also work in this case.

 

What blood tests did she have?  Maybe she was not given the whole panel (not uncommon) . . . maybe if you revisit that you could get more information.

 

Anxiety and depression are also symptoms of celiac disease.  

 

From my experience, my youngest son was diagnosed first.  Once I learned about celiac disease, I realized I had most of the classic symptoms for about 5 years.  I was extremely anxious, but I attributed it to being sick all the time and my doctor not finding anything wrong with me.  My blood tests were positive, so I went gluten free with my son.   Suddenly felt great.  Then doctor wants to do biopsy.  Says I hadn't been gluten-free long enough to change outcome so I did.  Biopsy was negative.  New doctor (at Celiac Clinic) says to go back on gluten for 6 months and do another.  I made it about 6 weeks and felt terrible again.  Stopped and just went gluten free.  I didn't need a positive biopsy to tell me I shouldn't be eating gluten.  My doctor diagnosed me with "gluten intolerance" even though I had positive blood tests and a son with celiac.  I clearly have celiac, but who cares?  Treatment is the same.


In Topic: Eating Out In Washington Dc - Need Suggestions

13 March 2015 - 06:30 AM

Thanks for the suggestions so far.  We will be staying close to the museums and stuff - taking the train, so we won't have a car to travel too far.  


In Topic: Chef That Wants To Borrow Your Shoes...i'm Taking A Walk

11 March 2015 - 05:09 AM

I think what you are doing is great, however, you will not get the full experience because you will have no reaction when the waiter, menu, kitchen staff, manager, etc. is wrong.  Our extended family is constantly rolling their eyes when we decline dinner invitations because they just don't get it.  If the place has a gluten free menu, why don't we just enjoy it?  The consequences of putting our health into someone else's hands - a stranger who may or may not know what they are doing - is just too great.  And, too stressful.  Sometimes I can't even enjoy my meal because I am so worried about what may happen tomorrow.  

 

We have a limited number of places we trust (CPK is one, but only the location at the Pru, not the one downtown) and sometimes even that can be inconsistent.  The fantastic waiter one day may not be there the next time.

 

If I was just "choosing" to be gluten-free, there would be 100s of options for me.  The reality is very different that what it may appear.

 

Maybe you could get those test strips (never tried them) and test each meal to see how often mistakes really happen.


In Topic: Chef That Wants Your Feedback

11 March 2015 - 05:00 AM

Our frustrations are pretty simple.

 

We have 4 in the family, 2 diagnosed with celiac disease (10 year old and me, the mom).  We live in Boston where we seem to have some choices for eating out.  However, for the kid, he can go to several places and get a cheeseburger (99, 5 Napkin Burger, etc.) but none of them can cook french fries safely.  Who wants a burger with no fries?  We LOVE it when there is a carnival or festival in town because the French Fry truck is usually there. They serve ONLY fries, so the oil has not been contaminated.

 

Which brings me to my biggest frustration.  I can cook most things at home.  However, I'm not too keen on deep frying.  Every now and then we'd love a real, fried donut . . . or crispy fried chicken.  I just can't duplicate those kinds of treats in my kitchen.

 

Ditto with wood-fired pizza crusts.  That is what I miss most.


In Topic: Symptoms Are Worse Than Pre Diagnosis

10 March 2015 - 05:32 AM

It is not uncommon for people's symptoms to change over time and for them to be more intense after being gluten free.  The longer you are gluten free, the more sensitive you become and the more intense your symptoms become.  My son had ZERO symptoms (except for a behavior change) when he was diagnosed three years ago.  Now he gets stomach pain and vomits right away . . generally feeling unwell for about a week and then joint pain and fatigue for about a month.  It's like he has a bad case of the flu and it takes his body weeks to recover.

 

I used to have all the classic symptoms.  Now I get a brief upset stomach followed by weeks of fatigue, insomnia, anxiety, brain fog, and joint pain.  

 

It is weird how your immune system works.

 

I wouldn't cut anything else out of your diet.  I would focus on making sure you were actually 100% gluten free.  Take into account cross contamination, things like that.