TGK112

Also considered myself to be asymptomatic. Doctor had me tested for celiac to rule it out as the cause of my osteoporosis. I was shocked and thought it must be a mistake when the results came back positive. But then I realized  that it explained the weight loss which I had the previous year. Once I was gluten free, I also realized that I was no longer getting canker sores in my mouth, mysterious skin rashes, or muscle spasms in my back. So I guess that I wasn't as asymptomatic as I had thought. To this day-- seven years since diagnosis-- I have never experienced "getting glutened" , although I'm sure I have slipped along the way. In many ways I feel lucky,  but in other ways it makes watching what I eat more difficult.  

I was diagnosed with osteoporosis several years prior to my celiac diagnosis. In fact,  it was my bone doctor who suspected celiac and ordered the initial blood test. Despite going gluten free,  increasing exercise, taking vitamin D and calcium, my bone density was not improving. So I was put on Prolia about four or five years ago,  and there has been some improvement,  not as much as I would like,  but my doctor thinks it has been fairly substantial. The only caveat-- once on Prolia,  it is apparently quite difficult to discontinue. I have not had any side effects from Prolia and plan to be on it for the foreseeable future. 

I've had osteoporosis for about 8 years.  I was put on Alendronate ( generic Fosamax) -- had no side effects from it, but my bone density was not improving. I eventually saw a bone specialist ( at the age of 56) - who ran some tests to rule things out. And that's when Celiac was ruled in. Unfortunately -- a perfect storm was happening all along. I had gone through menopause, had undiagnosed Celiac for who knows how long, was taking prednisone for all those "unexplained" rashes that I was getting.  I am now three years gluten free. Last year, since the Alendronate was not making much of an impact, my doctor switched me to Prolia ( twice a year injection) I've had no side effect from it ( except to my pocketbook since it is quite expensive) but it is too early to have a bone density scan to see if it is working.

The one advantage to my osteoporosis diagnosis is that it kick started me into exercising. My past scans have been so bad -- osteoarthritis and degenerative discs in the back -- that they can't even get accurate results from the back. However -- all the exercising that I've been doing has totally relieved me from my back pain. 

I will be travelling to Montana soon. Does anyone have some good suggestions -- particularly for Whitefish Bay and Bozeman?

Thanks much!

I was also asymptomatic when diagnosed and have always been nervous that I will never know when/if I've been glutened. Six months after diagnosis I had a repeat blood test and endoscopy. The endoscopy showed complete healing and the blood work was very near normal. After this, I have had blood tests on a yearly basis - showing that I am in the normal range. So I figure that my level of precaution seems to be working. I look forward to these yearly blood tests -- as positive reinforcement!

I do though wonder about "false negatives" If people have to go through a gluten challenge to show accurate results -- I wonder if my results are skewed in any way without my knowing it.

My gastroenterologist has suggested possibly having a follow up endoscopy around every five years as well.

I was what I thought to be asymptomatic. But for several month prior to my diagnosis I kept getting canker sores. I'm guessing the lip balm that I kept putting on them was doing more harm than good! Since being gluten free - past almost three years - I now rarely get them  -- maybe once or twice a year. I have no doubt that they are related.

I've always been one of those people who will not lick an envelope -- something I read somewhere about the glue containing gluten. It occurred to me that there seems to be stickers on nearly every piece of fruit and many vegetables as well. They must have some sort of adhesive -- should I ( we) be worried about those as well?

I am 2.5 years post diagnosis. I have had a celiac panel done six months after diagnosis and then each year since. I am always eager to get those test results since I had no symptoms when I was diagnosed, and have never felt "glutened" even though I'm sure I must have made some mistakes along the way. Luckily the results of the Celiac Panel have been very good-- my antibodies in the normal range. 

When my GI sent me my most recent results , he wrote 

- the Celiac Panel lab result is normal and this is good news.
- this means the disease is in remission

I was apalled that he used the word remission. No! The Celiac disease did not go away --- it's being controlled with a gluten free diet! He---sadly--- is the same GI - who after my first follow up appointment suggested that since I healed so well that I can occasionally treat myself "to a special treat" ( I did not follow that advice)

So I did some research -- and on the University of Chicago's website - which I think is one of the best - it states:

you can assess remission if everything is perfectly fine clinically. In other words, if the symptoms that were present prior to a gluten-free diet have not returned, you may be able to assume the disease continues to be in remission.

I was so surprised that they used the word remission as well. I think that the word remission is very misleading -- making it sound like the disease has gone away. Just like a diabetic who depends on insulin still has diabetes -- I feel that Celiacs who depend on a gluten-free diet still have Celiac.

What do you all think of the word remission?

Thank you for the responses. It seems, from the responses, that "no gluten ingredients" can be posted - but that doesn't necessarily make it gluten free. 

I've been disappointed with Trader Joe's. Everyone else seems to have jumped on the bandwagon. They  have so many products with "no gluten" - I wish they would test them and verify that they are gluten free.

I was hoping with the new FDA labelling law that it would be easier to determine if Trader Joe's products are indeed gluten free. Many products have the "g" icon, and a statement "no gluten ingredients" - with a disclaimer that it was manufacturered on shared equipment.

Does anyone know the law well enough to tell me - does a label saying "no gluten ingredients" qualify as gluten free? (despite the disclaimer)

I also get hives - on occasion. But once they start, I can't get them to stop unless I take a lot of meds to treat them - Benadryl, a prescription anti-histamine, and prednisone as well. I had this problem before I was diagnosed with celiac - and was referred to an immunologist. He said there was no way to determine what caused the hives - but he believe that it was an auto-immune reaction - that we were only able to treat the symptoms since we could not figure out the cause. About a year later I was diagnosed with celiac - and started my gluten free diet. I have only had one outbreak in the two years since diagnosis. Everything that I have read says that one auto-immune disorder begets another auto-immune disorder. I am hoping that if I can keep my celiac under control that it will minimize or stop the hives.

Am I the first lefty to reply???

Now this is interesting - after I was diagnosed - I encouraged my siblings to get tested.

My left handed brother has the celiac gene (but normal antibodies for now) - and my right handed sister does not have the gene.

I usually will preface my order by saying, " I don't want to be a pain, and I am NOT on any sort of fad diet - but I have a severe allergy to gluten" Sometimes I'll throw the word celiac in. Even though I am asymptomatic - I want to stress that I will have a severe reaction if I am served gluten.

It's been nearly two years since diagnosis - and I find that eating out to be the hardest part of the whole diet. At home - I can replicate/ substitute nearly anything. But when going out - I feel like I am walking in a mine field. Most times I can tell within a minute if the server "gets it" Even after two years - I am still uncomfortable spelling out my health issues to a server and even more uncomfortable trying to direct them in how to prepare my food. I will order things that are naturally gluten free - give my short shpiel - and then admittedly, hope for the best.

I was asymptomatic when diagnosed - I don't count osteoporosis as a noticable symptom. I had a follow up blood test and endoscopy six months after diagnosis - with good results. I then had only a follow up blood test a year following that - also showed normal antibody ranges - and it also showed there was no inflammation going on in the body. I am on schedule to have yearly blood tests. I am so happy to do so - since it's the only way for me to know if I am keeping the diet. 

So - I decided to write to Costco - and let them know how appreciated their gluten free products are - and to encourage them to read this post and start carrying more of these products across country. I received back what seems to be a "form letter"

Dear Tina,

We appreciate you taking the time to email Costco Wholesale.

Thank you for sharing your experience with this item. We work hard to ensure that we are selling the best products available at the lowest prices possible. It’s always a pleasure to hear when a member is happy with our choices!

We appreciate your feedback and have forwarded your email along with your suggestions to the buyers so they are aware of your satisfaction.  

Thank you,

Elizabeth R 
Member Service Center
Costco Wholesale Corporation
 

--Original Message--

To: Open Original Shared Link
Subject: Other

Note this message was submitted through the Open Original Shared Link web site customer suggestion page on Mon May 12 2014 20:19:10 GMT-0700 (Pacific Daylight Time)

Message:
As a person with Celiac Disease - I want to let you know how much I appreciate your recent increase in a variety of gluten free products. I shop at the Issaquah store, and every week there seems to be more and more items. I belong to a "celiac forum" which has thousands of members - and recently made a post commending Costco. You may like to see it
https://www.celiac.com/forums/topic/107263-kudos-to-costco/
This posting has had about 600 views to date. Unfortunately for others, their Costco's do not seem to carry these products.
Please - keep it coming!!

And - they did it again! This weekend we discovered a new gem at Costco--- fresh Linguini (RP's Pasta Company Gluten Free Linguini). I have never tasted gluten free pasta as good as this one. And it was easy to make  -- and best yet - it didn't all stick together.

I'm going to pass along this thread to Costco - and hopefully some of these products will head your way!

Thanks all!

Lots of helpful responses! Agreed - there's a lot we still don't know!

Since being diagnosed - I have always wondered  about our differences. Reading this forum, it is very apparent that we all react with varying types and degree of symptoms - from having no symptoms to becoming violently ill. I have always been curious - do we also have differences internally. I know that the standard is that we are able to tolerate 20 ppm - but have read that some people can only tolerate 5 ppm. Does that mean some of us can tolerate 30 ppm? Do our intestines get equally inflamed?? Or do some people get mild inflamation while others get severe inflammation.

Does anybody know the science of this??

I posted something similar to this when I first got diagnosed, and got a lot of preachy - "don't eat any gluten! "-responses. I know that - and I have never cheated. My second endoscopy showed full recovery and my latest blood test showed normal antibody levels. So I am not looking for permission to cheat - I am just curious about the science.

I went on a cruise with Princess Cruise line. They were fantastic. I let them know ahead of time and was told to introduce myself to the head waiter at my first meal. Each evening I would order for the next day. There were plenty of options, including desert. I had absolutely no need for the Kind bars which I brought along.

Keste's Pizza- West Village

Friedman's Lunch (also open for dinner at midtown location)--2 locations-- Chelsea market and midtown (around 31st and 6th.

I shop at the Costco in Issaquah, WA, where Costco also has its headquarters. So maybe they are trying it out here. I'll do my best to let them know that they should keep it coming!

Just went shopping at Costco, and they have really expanded their gluten free offerings

I was "asymptomatic" when diagnosed - but when reflecting back I realized that for about 6 months before diagnosis, I had blistering lips ( thought it was sun exposure) and frequent mouth sores. 

I have been very disappointed with Trader Joe's labeling since diagnosed - about a year and a half ago. I have brought it to managers' attentions, have emailed corporate offices - only to get responses that have not been very helpful. I was thrilled when the FDA made it's announcement - and hope to soon buy more than produce at Trader Joe"s. I did see the above quote on the FDA website. But when I kept looking - I found this

“Gluten Free” Terms

Consumers may also see the terms:

• “Gluten-free”
• “Free of gluten”
• “No gluten”
• “Without gluten”

The new FDA regulation applies to all of these variations.

And this

Inside the Regulation

FDA has set a gluten limit of less than 20 parts per million (ppm) for foods that carry the label “gluten-free,” “no gluten,” “free of gluten,” or “without gluten.”

I really think that it it about time that Trader Joe's steps up and be more clear when it comes to gluten free labeling. At this point in time - their little "g" icon means nothing to me. Hopefully soon things will change - I am just so surprised that Trader Joe's has been so disappointing

When I was first diagnosed ( also a surprise) about 15 months ago - I was excited to see that Trader Joe's had so many gluten free items. However - I quickly became very disappointed in them, realizing that the little "g" icon all over their products often comes with a disclaimer on the back saying " made on shared equipment with wheat". I brought this discrepancy to two different store managers' attention - but they were not very helpful. I also wrote Trader Joe's corporate to express my disappointment in them - and they just came back with a BS response. I am looking forward to the FDA labeling laws to go into effect - so I can shop there again with a bit more confidence. I really miss Trader Joe's products and am surprised that they have not stepped it up more when it comes to gluten free.