WinterSong

Because I think the moral thing to do is inform the parents that quotes from their kids will be posted online. I include the option to message me because some parents prefer to not post about their children publicly. 

I’m pretty sure it doesn’t violate any self promotion since my blog’s name/my full name isn’t stated. Like if someone mentions they work at a restaurant. They aren’t promoting the restaurant, they are just giving context.

I'm not religious at all, but I was really upset when the pope totally rejected gluten free wafers. I love what is written above - God/Jesus would not want anyone to get sick. I hope more churches offer totally gluten free options for those who need it.

Hi! I want to make sure I don't break any self promotion rules. Is this an acceptable post since I do not mention my blog's name and do not include any links? I've been a member of this forum for years.

"Hey parents - I'd like to put together a list of positive quotes from kids with Celiac. Quotes will be posted on my blog anonymously (I'm not including my blog's name/link because I don't want to break and self promotion rules - just looking to do something inspiring and positive for the community). Please feel free to comment or message me directly  1. What's the best part about having Celiac Disease? 2. What is better now that you eat gluten free? 3. What would you want to tell other kids your age who just got diagnosed?"

I don't think there is anything to stop an autoimmune reaction. However, I would try meditating. The stress of knowing when we are going to get sick does not help us.

What are your symptoms? Do you know your reaction time? Unfortunately, I don't think there is a way to immediately stop a gluten reaction. Drink lots of water, rest, and be kind to yourself. Sorry to hear that you got glutened!

Thank you so much for your advice! I'll try some of your suggestions. Unfortunately, I think I'll be skipping the dermatologist if I can manage. Super high deducible means i'd be paying out of pocket

This is the second time this has happened over the past 2 months. I've developed some very dry skin that starts at the base of one ear and wraps down/under/around my entire jawline. It's not my entire neck - it mostly wraps in a line around my face. My makeup/brushes never touch that area and I haven't changed facial products recently, so I'm totally puzzled as to what I could be doing that caused this. I'm wondering if anyone has ever gotten a similar reaction due to food intolerances/allergies? 

(Background: I've been diagnosed with Celiac Disease for several years and am very strict about the diet. Sensitive to soy. No other known food allergies/intolerances)

I made an informative video for Celiac Awareness Month that demonstrates how small 20ppm is. Am I allowed to post a vimeo link?

Thanks!

Open Original Shared Link

This was on last Tuesday. So happy that a popular national news program is spreading good information!

I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives.

This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (Open Original Shared Link)

First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few.

Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”:

• asthma
• bladder infections
• dental problems
• dandruff
• high blood pressure
• headaches
• blurred vision
• leg cramps
• back pain
• pale skin
• brittle nails
• acne
• bad bread
• mood swings
• ADD
• Anxiety
• Depression
• a short temper
• night terrors
• panic attacks
• irrational anger
• sinus pressure

Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test.

This is why I always say – You cannot know that you do not have Celiac Disease until you get tested.

“One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.”

WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future.

“Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.”

I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms.

This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence.

“The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.”

This brought me to the USPSTF website.

In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response:

False positive – there are rarely false positives

Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test?

Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work.

“Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible.

“Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you???

The USPSTF is taking public responses to their draft, all of which must be submitted by May 30^th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month.

Open Original Shared Link

Open Original Shared Link

Well, that is just wheat. Their bars/squares might be wheat free, as well, but the culprit there is barley. 

Also I just got this reply:

For legal reasons the information that has been provided is the only information we are authorized to provide you with. 

To reiterate, our products are not certified as being gluten free. FDA requires products to be tested to confirm that gluten level is below 20ppm. Currently, Ghirardelli products have not been tested to this requirement and therefore, we do not make any gluten free claims for our products.

Sincerely, 

Ghirardelli Consumer Services

Hey guys, 

I emailed Ghirardelli to ask about their updated allergen information because I had heard that people stopped recommending most of their products. I was specifically asking about their chocolate chips because my understanding is that they are free of gluten and not made on the same lines as that one bar/square that contains barley. This is what I received back:

"Thank you for contacting Ghirardelli Chocolate Company.  We appreciate your interest in finding out about the ingredients in our products and your interest in a gluten free product.

At this time we do not offer any "gluten free" products, but appreciate your interest in seeing whether Ghirardelli offers one.  Our products are not certified as being gluten free. FDA requires products to be tested to confirm that gluten level is below 20ppm. Currently, Ghirardelli products have not been tested to this requirement and therefore, we do not make any gluten free claims for our products.

Please reference the ingredient information, on our packaging for any Ghirardelli product that you are interested in, to determine if it is suitable for you.

Please know you are a valued consumer and we do appreciate your interest in our products.

Sincerely,

Consumer Affairs Response Team"

I asked them to please clarify - are your products testing over 20ppm? Or you don't test them at all? I also asked about the lines that the chocolate chips are made on because the ingredients do not indicated any problems. The customer service rep sent me the exact same message back with one of the lines underlined. I emailed again, and they don't seem to want to disclose any more information.

Has anyone else had any luck talking with them lately? Insights on the chocolate chips?

From Mom (she doesn't have a computer at the moment, so thank you for being patient as I post for her):

Gemini, Do you take the  chewable  product as recommended.  It appears to only have 300mg of calcium per day? That seems to be to little for someone with osteoporosis? I also saw a product they sell that is extra strength but not chewable which has more calcium per serving ?

From the mom:

Dear Gemini, thank you for your response. I have been to a bone specialist and he said I was loosing bone due to medication I was on.  2 years later with out the medication, following a strict diet, weight training and walking and taking supplements I lost more bone than with out the big push to stop the loss of bone.  I would be happy to just stop loosing bone but in search of the answer. I thank you for sharing your solutions with me.  I have been on plant based Calicum raw and organic but I will do tea search on HCHC.  Also I have read that it is important to get k2 from Natto instead of synthetic K2 because of absorption. I have also read you need 100grams of K2 for each 1000 vitamin D you take.  I don t know if this is true but I was directed to info in a book called vitamin k and the Calicum paradox.  I wish you much luck in preserving your bones and hope I find a solution over the next 2 years. 

And yes, she is very strictly gluten free

From my mom-

Gemini thank you for your response. I seem to be in a similar situation except I broke a rib while leaning a weight bench.  Even though I have been eating right And taking food based supplements I had a large loss of bone in my right hip.  I am trying to come up with a new plan that will stop my bone loss.  I am taking 200 k2, 1500 vitamin d and 1200 Calicum. Do you have a recommendation for any other kind of vitamins or brands? The doctors I have encountered here only want to bully me into prescription drugs and I don't feel comfortable with that. I am going to add 6 prunes to my diet to see if that will help and of course continue to exercise daily.  Thank you for your help 

Thank you all for the comments. A note from my mom (the one who I am helping with research):

I was diagnosed with osteoporosis 4 years ago. I was told my only option was to take one of the pharmaceutical drugs. I tried for 6 months and realized I could not do it after much research. I have been gluten free for 5 years and worked even harder at my diet, exercised 5 days a week and took whole food supplements.  I just found out I have gotten much worse and my new doctors only option for me is pharmaceutical options again. I suffer from sever jaw pain already and fear I will be the small percentage that will suffer with that side effect. I have read several opinions that for someone like me HRT is an option. My general doctor is clueless in HRT as is my OBGYN.  That is why I was asking what kind of doctor will prescribe the HRT and an idea of the dosage.  I broke a rib and s foot with on one week and realize I must do something.  I thought the source of my osteoporosis was medication I was forced to take for my jaw but I stopped that medication 2 years ago and then saw the big drop in bone density.  I am 57 and think the cause is hormonal.  Or my life long struggle with a gluten intolerance.  I appreciate everyone's responses but I am in a serious situation and forced to educate my doctors.  I was just looking for info to bring with me and I am also looking for someone in my area who can help me.  

Thank you all for the posts!

manasota- how much is your low dose of HRT and which type of doctor perscribed the medication? I would love to know any extra info you find out

A family member of mine is fairly young (mid 50s) and was diagnosed with osteoporosis most likely cause by a lifetime of undiagnosed Celiac. The medication her doctors have her on only prevents further damage, it doesn't rebuild bone. Also, they will only let her be on it for 5 years because the meds will cause her bones to become extremely brittle and may eventually bread. This seems like a ridiculous medication. Has anyone found or seen any research on alternative treatments for osteoporosis specifically caused by Celiac?

thanks.

The holiday season is quickly approaching! What's on your gluten free/kitchen wish list?

I'm from New York, and I never eat in Times Square when I got to the theatre. It's more than worth it to travel a few minutes to an amazing restaurant. I recommend:

Bistango

Senza Gluten

Colors

Friendman's Lunch (near 34th St so not too far away)

There is also another Bistango on 55th St I think, at the Kimberly Hotel. I've only been there for brunch, but I've heard great things. 

Have fun!

Thank you, everyone, for the advice. I may ask my vet for an alternative, but if she doesn't have one I'll just continue doing what I'm doing and work to decrease my anxiety about it. Thank you for sharing your experiences. 

And bartfull - very sorry for your loss. I'm sure that you had given her a wonderful home and that she lived a very happy life. 

Thank you so much for the advice.

I don't think I've gotten outwardly sick from handling my cat's food. My last blood test came back negative, but she lives at my boyfriend's apartment (we're planning on moving in together), and I wasn't seeing her on a daily basis. But emotionally it has been stressing me out a lot, and I'm worried about long term effects of having gluteny cat hair everywhere.

In the past, my cat rairly drank water, but recently has been drinking a lot more. She didn't like the moving water. Our favorite trick was placing a mug of water in the bedroom. She thinks that it is my mug and that she's being sneaky and stealing it

When she was with her foster family, she ate dry cat food full of carbs and gluten. When we took her home we put her on a very good quality wet food because we wanted her to be healthier, but that was when she first started getting constipated. The vet had us try mixing pumpkin in with it which only helped a little. Then she went on the medicated food and her poops looked like dinosaur poops. We couldn't believe that she had all of that in her little body! Her energy and overall happiness increased. So the tricky thing is that all of the advice to put her on high quality, high protein, low carb food does not work for her.  I think I need to find a gluten-free brand of specially made food for constipated cats.

I've posted about this briefly in other topics, but I think I really need to make a switch and need help.

My cat has been to the hospital twice for severe constipation. The vet put her on a special prescription food to help her go to the bathroom, and now she's healthy and very happy. But it has gluten in it. I'm struggling. My boyfriend mostly feeds her but sometimes he gets stuck at work or goes out of town. I hold my breath when I feed her because of particles that are released in the air when I open the bag, and I wash my hands constantly. But then of course she licks herself after she eats. And she sheds. And her hair is everywhere. And I also want to kiss her because I love her so much.

I'm going to talk with our vet, but my boyfriend is very reluctant to try anything new for fear of endangering our cat's life.

Does anyone know of gluten free cat food for constipation?

Also, any advice? I feel like I need a hug.

Hi everyone!

Just a heads up that there are a bunch of bloggers doing great product giveaways to celebrate Celiac Awareness Month. If you search instagram/twitter/facebook for hashtags like #glutenfreegiveaways, ect you should find a bunch. 

Sharing the love!