TGK112

I am also fairly symptomless. In my 14 months being gluten free - I cannot really say if I have ever been glutened. I would find it hard to believe that I have not accidently been glutened at least once.

I found that having a six month blood test ( as well as a follow-up endoscopy) to be very reassuring. It let me know that I was indeed keeping the diet correctly. And now I am on track to have yearly blood tests as a continued follow up. This seems to be my only and best feedback.

Costco now sells a product called Angie's A Holidrizzle Dark Chocolate Sea Salt Kettle Corn - which is certified gluten-free. AMAZING!! It's popcorn with a chocolate drizzle - and delicious!! Even though the name says "holidrizzle" - I went through half the bag last night!

I received the U of C gift basket a couple of months after diagnosis. It was awesome -- an enormous basket filled with lots of different foods, plus magazines and coupons -- all with a bow on top:-)

It was so generous that I immediately made a donation to them.

I was diagnosed with osteopenia and then osteoporosis before I was diagnosed with Celiac. I am 57, post menopausal - take Vitamin D, Calcium, and Alendronate (Fosamax) - a bone building drug, and exercise. I don't hold out much hope of building a lot of bone density - I'm hoping at best to hold steady. After a year of being gluten free, I had another bone density scan - and was disappointed to see that I am still slipping - although it was just a small amount. I am hoping that after two years gluten free, my bones will no longer be losing density. Unfortunately - age is not on my side

What's Fosamax?

It is a prescription medication given to people with osteopenia or osteoporosis to strengthen bones in order to prevent fractures.

My celiac and osteoporosis go hand in hand - I am equally concerned about both of them

A question I have:  "What do you do about poor density when you find it? "

 

My thoughts about it: 

 

My answer " I would make sure that my nutrient levels were good.  "

 

self:  "Oh, I am doing that, so why do I need to test my bone density?" 

 

...If anyone has thoughts on my thoughts, or on my question go ahead. 

I also do weight bearing exercises and I am on Alendronate (Fosamax) - to strengthen the bones.

I went in reverse. My bone density problems were discovered before celiac. I was seeing a bone density specialist - because I was losing - and he ran blood tests on me ( "to rule things out") - which showed celiac, confirmed with an endoscopy. I was pretty asymptomatic and my other blood tests showed normal ranges of calcium, Vitamin D and iron. I posed the question to my doctor - If it does not appear that I have a malabsorption issue going on -  is celiac even contributing to the osteoporosis? His response was that ANY inflammation is bad for bones - and yes the inflammation of the small intestine can contribute to osteoporosis - even with normal Vitamin D levels.

My experiences at Red Robin have been great! They have a dedicated section for preparing their burgers and all fries are gluten free - the fries are made in a dedicated fryer. Five guys is good too - especially for fries. I was dismayed though - when I was there last time, I told the server my situation, told her that I brought my own bun. The good part - she offered to change her gloves. The bad part - she told me that she thought she had heard that their buns were gluten free  

I told her - I don't think so!! 

I was asymptomatic. It was discovered after a blood test since I was losing bone density. It was then confirmed with an endoscopy. In retrospect, yeah I was a bit bloated and yeah I had lost some weight. I was quite nervous at first - since I never had any real reaction to gluten - I didn't know how well the diet was working. I had a follow up blood test and endoscopy after 6 months - which showed much improvement. The antibody which I think you are referring to is Transglut IGA - which is suppose to be between 0-3. The first time I was tested , mine was at 19. Six months later, it was 4. I will be tested again after a year - hopefully by then it will be a bit lower. Having a follow up gave me a great deal of peace of mind - since I felt that I personally was such a poor barometer for gluten.

I guess cruise lines are getting with the program!!

I just returned from a 7 day cruise to Alaska on the Star Princess - Princess Cruise line. 

Like Celebrity - it seems like the staff on Princess are very knowledgeable about gluten free. On the first day of the cruise, the head waiter met me and discussed my dinner options. Each evening thereafter, he would bring the next day's menus, so that I could pre-order lunch and dinner. When I would show up the next day, I would tell the wait staff my cabin number - and my meal was ready for me. Each meal, while the rest of my family had dinner rolls, I was provided gluten free bread. I was told that any pasta dish could be made with gluten free pasta - and that it was safely prepared separately.

I felt very comfortable eating fruit and cheese from the buffet. There were ample selections to choose from off the menus as well. I packed a bunch of Kind bars - just in case, but I had no need for them. 

I ate very well - maybe too well ( flourless chocolate cake, and lots of ice cream!)

Cafe Piccolo

Open Original Shared Link

Small Italian restaurant in north Seattle
I had bruschetta, lasagna, and cheesecake - things I have not had since diagnosis, about a year ago. All breads and pasta can be substituted for gluten-free. Everything was delicious! Waiter was very knowledgeable - as soon as I started inquiring about preparation - he said " We're very careful about cross contamination" - music to my ears!

50 North

Open Original Shared Link

Large menu - burgers, fish and chips - available as gluten free. When I questioned the server about the preparation - he told me that anything gluten free is prepared in a designated area. They even had gluten free key lime pie. I had fried eggplant sticks as an appetizer, a lamb burger with fries for an entree and key lime pie for dessert - it was all delicious!

I rely on "Find me Gluten Free" - which I think is a great app or web-site - I use it both ways. I try to post whenever I go to a new restaurant. It is a great way to network. The more people who contribute - the better the network!

I was sitting here eating dinner...ate a cookie for dessert...and just about barfed.

Seriously, I can't get the taste of this dam* cookie out of my mouth.

It's Enjoy Life "soft baked chewy chocolate chip cookies"...OMG, yuck!

-Julie (I'll be back on later...I gotta go brush my teeth!)

I agree!!!

I bought the Enjoy Life soft chocolate chip cookies - and they were disgusting!!! After 1 cookie, I threw the rest away

I was just researching this today - and I settled on Softlips.

It has an SPF of 20 , and says "All Softlips products are gluten-free" on the back of the package. Found it at Target.

Thank you for the thoughtful and thorough responses.

I've been extra careful to stay in the shade and to load up on sun screen - and the rash has cleared up. I use to be a "sun worship-per" as a teen - and maybe now I am paying the price. 

I never had this problem before - so I was wondering if it is a celiac connection. I tend to blame all of my woes on celiac!

I was diagnosed close to a year ago. I've been gluten free since, with good results. My six month follow up showed great improvement. Since I was pretty asymptomatic prior to diagnosis, this was good to hear.

However,this summer I have become extremely sun sensitive. After even a very short time in the sun, I break out in a painful and itchy rash. It doesn't look like the pictures of DH, but more like a bumpy sun burn.

Does anyone else out there have sun sensitivity-- and what do you do besides staying covered up or inside?

I use Neutrogena - they have a lot of gluten free products.

Whole Foods sells both Against the Grain pizza and baguettes. They ARE delicious! I buy the rosemary baguettes- they are so tasty, even before heating.

I have been a long time customer of Rite Aid. Despite my asking them to keep a record that my medications need to be gluten free - I have had to remind them each time I have a prescription. So yesterday - I brought in a prescription, told them that I was Celiac - and  asked them to make sure that the medication is gluten free. After a wait, the pharmacist told me that he could not verify that it was gluten free - and asked if it was okay that there may be a bit of gluten in it. What?!? - Maybe he should dispense some drugs with just a tiny bit of arsenic - and ask customers if that was okay with them.

I called Walgreens - and had the prescription transferred. They were willing and able to call the manufacturer to verify its gluten free status. They marked my file as I stood there.

Now a vent on generic drug makers - I keep a list of gluten free drugs on my phone. However - not all makers of generic drugs are on it. The pharmacist at Walgreens told me that the manufacturers can change the non-active ingredients at any time - so it's good to check the gluten free status on a regular basis

When I was first diagnosed my primary care dr told me, despite my bone loss "Celiac has nothing to do with osteoporosis".

After being on the diet, I had a follow up endoscopy. My GI told me that because I healed so quickly "You could treat yourself on occasion with a (gluten) treat"

I live in Seattle - anyone know of good doctors here?!?

I was pretty asymptomatic - except for bone loss and some weight loss. 

After six months on the diet my anti-bodies were near normal and my endoscopy showed complete healing!

All my baking is done with Bob's Red Mill All Purpose flour with great success ( and with added xanthan gum). I've been able to use all my old recipes - and it's very hard to believe that the banana bread, or muffins... are gluten free.

Last night we went to Cafe Piccolo in north Seattle. What a find!! Awesome gluten free Italian! The menu has gluten free all over the place! The gluten-free bread is used to make bruschetta. Any pasta dish can be made with gluten free pasta. When I asked the waiter about separate pots for their pasta, he responded that they " are very careful not to cross-contaminate" The fact he knew that word was thrilling! All their desserts are gluten free.

I recently had my 6 month check-up - and had very good results. My antibodies were near normal, and my intestine has nearly healed. I have yet to feel any real digestive symptom - but must admit that I never realized how constipated and bloated I was until now, when I'm not.

As for my Trader Joe's confusion - I still shop there - but not nearly as much as I use to. I wrote their headquarters and was pretty disappointed with the response that I got. I'm not sure why, but I expected better from them!

I would also like to add a couple more to the list

Portage Bay Cafe -several locations in Seattle - I had the buckwheat pancakes - but they also make gluten-free french toast. All these come with their "fruit bar" ( fresh fruit toppings)They have a nice selection of gluten-free items for breakfast!

Wildfin - in Issaquah and Renton - has en extensive gluten-free menu. However there is a disclaimer that the food is not prepared separately - and when I asked, they do not have a designated fryer. But - with that said - I felt like there were plenty of safe options. I had clam chowder for the first time in seven months

Good to know! I was very sad when Grace's 5 closed.