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Gemini

Member Since 25 Aug 2006
Offline Last Active Aug 31 2015 07:58 AM
*****

#950566 Paper Plates?

Posted by on 27 August 2015 - 01:23 PM

 

One of my doctors told me she wished even half her patients were as well informed as I am.  I have been known to walk into their office with medical studies to discuss them, for example.  Also, whatever you have been reading, you clearly believe that you're completely healed, but medical science says that if that is true, you are in the minority.  Most people do not truly heal all the damage from celiac disease, even on their gluten free diet.  And one major factor that is attributed to, is ongoing low level exposures people aren't aware of, because it drops them below the threshold of gi tract discomfort.  Here is just one study pointing out that most of us aren't healed.

Again, here is just a small example of why your posts are so loaded with error and misinformation. If you want to believe you are well informed, have fun with that.  We had other people on this board in the past who seemed to think they were always right and did nothing but spread erroneous info, make wild claims about being glutened from garden produce and that they reacted to 1 ppm of gluten, among other things. How sad that some people choose to ignore all the real medical advice about Celiac and persist in dispensing nonsense.

 

The vast majority of people with Celiac, who know their subject matter and what to do, heal well on the gluten-free diet.  Otherwise we would all be miserable, sick and life would not be worth living.  You can do whatever you want as it won't impact me. I just hope the OP and others who are looking for real answers to their Celiac issues know enough to ignore those who persist in spreading myths and incorrect information. That is the real challenge today.

 

 

As for the husband, he also has ADHD.  I can nag, yell, cry and scream until I am blue in the face, but my medical conditions don't make his magically stop existing.  He is always extremely apologetic, and tries really hard after a problem, but he's not good at being consistent with his own needs, either, so expecting greater success with mine would be silly.  Perhaps critiquing people's parenting skills of challenging children and ADHD husbanding skills you don't have and have no genuine context for, is not the best way to impress upon me that you are an expert of some kind functioning from facts.

 There are ADHD husbanding skills?  I must have missed that class...who knew?  I am also very upset that I don't possess any genuine context either.  ^_^

 

Does anyone want to let Mrs. Condescension know the address of that other forum where Celiac myths and misinformation abound?  She would be quite at home there.  :lol:

 

 


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#950563 Paper Plates?

Posted by on 27 August 2015 - 12:55 PM

Um, could I make a suggestion? If your husband is the only one in your home who consumes gluten, why not segregate his dishes and YOU wash them by hand? That way the kids can continue using the dishwasher for the gluten-free dishes, and you will be assured there is no contmination. :)

C'mon Barty........that makes too much sense.  There are just some people who love making thier lives harder than they need to. ;)


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#950513 Paper Plates?

Posted by on 26 August 2015 - 09:46 AM

Personally, I have found that I have to ask the people I live with to leave the house when eating wheat.  The problem is so complex that it's just too impossible otherwise.  The kid could be sneaking dad's food.  Dad, who is clearly not very worried about the whole thing, can be leaving crumbs on tables, chairs, his clothes that get transfered to the boy upon getting a hug.  It can end up in any fabric, any carpet.  Your dishwasher doesn't actually run continuous clean water through itself, it runs a couple cycles and splashes the dirty water around a bunch, and can leave wheat behind, sponges can harbor it.  Toasters, skillet scratches, spatulas and many other things can harbor it.  The dog's food may well have it, and they could be spreading it through the house.  It's also in all sorts of other weird things.  Chapsticks are sometimes contaminated.

 

I get the rash, so I can figure out when I was exposed every time, even at low doses, and I have found so many sources it's hard to even quantify them all.  I had to get my husband to find a gluten free cereal, because the amount left on his dishes in the sink was spreading it in the kitchen and the dishwasher, and I was being glutened.  There really is no safe amount in the house for some of us.  Fridges blow air around inside them and can spread crumbs.  Microwaves can have things pop and spread wheat inside them that then falls back into the next dish warmed in there.  If he's REALLY sensitive to it, like I am, you will be chasing your tail forever with someone eating gluten and drinking beer in the house. 

 

There is one brand of paper plates that are made of wheat straw, but as sources go, that's pretty unlikely.  It's more likely he's getting it from the environment he's in lots of the time.  At this point, the people in my house need to go to a bar for a gluten beer, and McDonalds or at least the back yard for wheat snacks they aren't allowed to store in the house.  It feels ridiculous to need to do that, but when you eliminate enough sources by eating paleo from your garden, you start looking at where on earth it could be coming from, and the answer is that people don't practice clean room behavior about food they eat, and it isn't realistic to believe they will, so they need to not have it in my environment. 

There is so much misinformation in this post, I felt the need to answer.  I am also very sensitive to gluten and as a diagnosed Celiac, do not need to live in a bubble to live well and healthy.  I am beginning to think there needs to be an information thread about cross contamination, because there are many people who clearly do not understand the basics.

 

You cannot be glutened unless it gets into your GI tract, which begins at the mouth.  Dishwashers are safe to use, unless you do not rinse your dishes beforehand and really, who does that anyway?  You would have to leave spaghetti on your plate before any worries about it would be realistic.  I don't know what brand of dishwasher you have, but mine does not splash dirty water all around during the cleaning process.  Clean water definitely is being issued from the jets inside.  I won't even remark on the fridge scenario.  :rolleyes:

 

If you need to take a class, do so. Otherwise, your life will be spent living in fear of food and that is no way to live.


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#950229 Help, Daughter's Ttg Is 214.3 After Going Gluten-Free 10 Months Ago?!

Posted by on 18 August 2015 - 01:22 PM

Have her symptoms subsided with the gluten-free diet?  If so, then she probably isn't getting gluten in her diet....unless she was asymptomatic to begin with.

 

When rechecking antibodies after starting the gluten-free diet, docs need to do both the DGP and tTg.  The tTg only checks for tissue damage and not dietary compliance.  This is a huge mistake they make a lot and people end up being told they are screwing up their diet when they may be tripping for another autoimmune disease.  I would insist on the DGP to see what that is and also have them do additional testing for other AI diseases that occur with frequency along with Celiac.  Hashi's thyroid disease, RA, Sjogren's Syndrome and Type 1 diabetes, to name some of them.  These are all blood work tests so not that bad to undergo.

 

Good luck!


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#949528 Talenti Gelato

Posted by on 29 July 2015 - 12:47 PM

I don't think it's good advice, especially for any new Celiacs that may be perusing this board, to say that all we need to do is check the labels and not worry about whether or not a claim has been made. That has not been the case in my experience and I think this forum is ripe with other people who've said the same thing.

 

Celiac Disease is not that hard to learn and manage.  There definitley is a learning curve but there is plenty of info out there on how to do so from reputable medical sites and books.  It's obvious when people fail to learn from the right places because these are the folks who think gluten lurks everywhere.  It does not but if that were true, no one would heal and we would be stuck at home, eating only whole foods and never venturing out to eat or living life normally, which is entirely possible with this disease.

 

I've been cc'ed and glutened by plenty of products containing and/or contaminated with undeclared wheat. Also, just because you've been eating something forever does not mean it's safe. People have different levels of sensitivity and it's well known that auto-immune diseases can fluctuate or cycle in their severity at different times in an individual's life. I've had periods of time in my life where exposure to wheat didn't have the same impact that it does now.

 

If you believe you have been cc'd or glutened that many times, then you need to review how you are doing the diet.  Sorry to have to add this ad nauseum, folks, but I have been gluten free for 10 years and the number of times I have taken a hit is extremely small....not even once a year.  I am an extremely sensitive Celiac also.  I had to make my house entirely gluten free because

that was the only way it worked for me. When I did get sick, it was almost always from other's mistakes and not from a product I bought at the supermarket that was cc'd. Many companies do not change their ingredients unless it's an announced change because they generally do not want to mess with something that works.  I routinely use products that I have used for 10 years and have never gotten sick from them so all this hype about products constantly changing is a bit mystifying to me as I can't be the only one who routinely goes long periods of time without getting sick. But I read the labels before buying and that seems to work just fine.  Nothing in life is guaranteed 100% but relying on labels is the best way to go.  If you have questions, call the manufacturer and make your decision from there.

 

Not to keep bumping this thread, but in my opinion, consistency is key when it comes to trusting a brand or product. This is not a situation where the product is unlabeled, but also produced in a facility/on lines with no wheat, or in a place that's cleaned thoroughly, and it's always been that way. I eat plenty of unlabeled products when the company is transparent about their manufacturing processes and consistent in their statements. The thing is that Talenti has said a couple different things over the past few years and that makes them, as a brand, seem untrustworthy to me.

 

From my perspective, the FDA passed their new gluten free labeling law, and in response, Talenti slunk away, removing all their claims. It seems pretty obvious that they have some issues with their ingredients or their manufacturing procedures. Personally, I think they DO have an obligation to the Celiac community because they have always advertised themselves as gluten free and continue to do so online, despite the fact that their actions imply the contrary. Removing the claim means that they very well may not meet the current legal definition and probably do not. Reminder, that legal definition was put in place for the very purpose of protecting our health.

 

No.....most likely that is not what is going on.  Because Americans are such sue happy people and mistakenly think that an FDA stamp of approval entitles them to a 100% safe meal or product, some companies are removing their gluten-free labeling because they don't want to spend the money and time to test and they don't want to be sued by people who may very well have gotten sick from something else in the product but choose to insist it was gluten.  This happens a lot.  I can also see them not bothering to test when the product is naturally gluten free.  Do we really need to ceritfy milk as gluten free before some people think it isn't cc'd?  I choose to rely on myself to figure out what is gluten-free anyway and not the governmentThe FDA routinely puts their blessing on medications that are later recalled because they harm people........lots of people.  It really all comes down to reading the label, calling the manufacturer if you have doubts or questions and deciding from there.  Once you have been gluten-free for awhile and have really learned the diet well and what is in the food you eat, it becomes second nature and easy to figure out what is safe for you.

 

I don't think this is acceptable, especially when you see companies like Amy's taking the exact opposite course of action. Instead of removing their claims, Amy's complied with the law in order to retain/secure their customer base. We've also seen several major brands START making the claim, like Hershey, for example. Tostitos is another one. They did the ethical thing (and quite frankly, the cost effective thing,) by waiting to make any labeling claims/changes until they knew the definitive legal guidelines.  Food manufacturers knew the law was coming. Some chose to respect it's intent and others took advantage of a limited timeline before ditching the "gluten free" label and jumping ship altogether.

 

I am surprised you have referenced Amy's because Amy's  has had problems with cc'd products.....or they did in the past. That was the product line I got sick from and I know many Celiac's who do not eat Amy's products as they have gotten sick also.  The only thing that seems safe from Amy's, in my experience, is the gluten-free mac and cheese. Two of their other products made me extremely sick and it was a gluten hit so I don't eat Amy's.

 

Outside of ingredients that outright contain wheat, Talenti also uses a lot of ingredients that could be subject to cross contamination. I've never seen them account for that. Personally, I always thought gluten free Peanut Butter Cup gelato was probably too good to be true. There are plenty of Artisan products that are certified gluten free and probably don't have the consumer volume that Talenti has at it's disposal. Other companies make it work because they care about their customers. I'm the first one to say, Talenti is very tasty. That's really just not enough of a reason to eat it given recent events.

 

I do not eat gelato because of the dairy but which ingredients do you feel could be subject to cc?  This is one of the biggest misconceptions about the gluten-free diet.  I think people who fear that everything can be cc'd should just stick to a whole foods diet.  Of course it can happen and does but the vast majority of foods out there that have been made available to us, especially in the last 10 years or so, are safe.  Many of them have dedicated facilities also and if you can't trust that, then your option is whole foods only. But there are people who insist you can be cc'd by vegetables because they are coated in wax or by chicken if they eat a wheat containing grain in their feed, which we all know is not true.  I understand the being careful aspect of this disease because I've lived it for the past 10 years.  But if gluten-free foods are that contaminated, no one would heal.  I certainly never would have achieved this level of health if all those unlabeled or label removed foods had the potential to be cc'd. Companies are not going to be that careless and risk losing a lot of business or be sued.  Maybe the labels should read "naturally gluten-free but use at your own risk".  I know that if I ever do become sick from a product and it is a true gluten hit, I just don't buy the product again.  Lesson learned and this will not set you back on your healing...only if it happens frequently. 

 

I do not want newbies to think that the food supply is something to be feared and that finding safe food without a flashing certified gluten-free sign is impossible, because it is not.  There are many mainstream food products out there that can be enjoyed safely, even by sensitive Celiac's such as myself. I have found that eating cleanly can have it's drawbacks.  Sometimes foods which are rich will make my gut feel unsettled.  Has nothing to do with gluten, just food I am not used to eating anymore that is richer than what I am used to.

 

 


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#949485 Talenti Gelato

Posted by on 28 July 2015 - 06:01 PM

I should be the one to say STOP now. I can't even eat gelato or ice cream because more than a few mouthfuls and I suffer the consequences. God Bless the people who thought of putting salt and caramel AND coffee and chocolate chips together! I'll have to make them in cookie form........ Ha, Ha!
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#949471 Talenti Gelato

Posted by on 28 July 2015 - 02:51 PM

That's such a shame, that they are removing labels from their products. Although I don't use this particular product, I still think that everyone has a right to know what's in their food. Without the label of gluten free, this might prevent some people who are gluten sensitive to buy it. I wish that this company could see it from that angle. Maybe if yoinwrote a petition up posted it on here and had a bunch of period sign it then we could get their attention? Or maybe a group of us should boycott them? I don't know but I think that it's possible to be effective here.

I think if you want to know what is in a particular product, all you have to do is read the label.  By removing a gluten free label from a product, that in no way means it is not safe.  There are many people who want things made really easy for them so they won't have to read labels.  That is not something we should be doing.

 

Like Lisa, I am also gluten free for 10 years and I still read labels.  It is rare when I sustain a gluten hit and it has not occured from a product I bought in any store.  It was always in a restaurant when I was traveling and that has only happened twice, in 10 years of travel.

 

Talenti is under no obligation to cater to the Celiac population because there are enough people without Celiac who buy their product.  They removed their labeling because they had to, unless they want to test their product.  It's the same product as before, except for the gluten free labeling.  It seems many Celiacs eat this without issue so why all the upset about the removed labeling?  If the ingredients list is the same on the label, the product should still be safe for those who choose to buy it.


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#949191 Damage To Villi But No Ile?

Posted by on 22 July 2015 - 12:05 PM

If you had a Celiac panel that was positive and a biopsy that shows damaged villi, that is Celiac Disease. What might be happening here is that many unenlightened doctors will not diagnose it as Celiac unless it is at least Marsh II damage or higher.  You may be at Marsh I, which just means you caught it earlier, before the really bad damage happened.  There are a few other things that can cause damage to the villi but those will not cause a positive Celiac panel.

 

I would wait until you get the report in hand and post results, if you feel comfortable doing so.  Other than that, I would go gluten free and not look back.  :)


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#948526 I Need Help

Posted by on 09 July 2015 - 11:52 AM

Hello keven,

I'm Eloise and 14.Im not so very good with words rigght now but wanted to try and writ somthing.

I no that you are scared but I think that you will be okay too once you give it a little bit more time like the lady said.

I no what hosspitals are like they are not nice at all.I no what it's like to be sick everey day of your life not nice either but you learn to acept it and realise that allot of people are worse out there.

When I was born the doctors tolld my parents i would be lucky to see age 12.I have cystic fibrosis.Im 14 now and well they were wrong and I'm hoping with two of my sisters in heaven now that they'll be abel to giv me some of the years that they lost and maybe the doctors will find me a lung when I need it.

When life gives you something that makes you feel afraid that's when life gives you a chance to be brave.Thats what the poster says on the bacck of my door.

Be brave keven.One day at a time.Thats what I do.Thats what my sisters did too.

You know, Eloise, every time you post here you just keep on impressing the hell out of me!  You are guts, grace and dignity all rolled into one nice package.  Keep up that fighting spirit and I love that poster on the back of your door!  :)

 

Kevin.........my older brother, who turned 60 this year, has had Type 1 diabetes for many, many years.  I also suspect he has Celiac too but he is in denial about it.  You are lucky that they caught both diseases at such a young age because it may just prevent you from having worse problems as you age.  I know this is hard and I certainly share your loathing of hospitals because they are no place for young people but please give this more time and be patient.  You will feel better down the road and life will be much better for you!  It takes time for a Celiac to heal, especially when you have diabetes also.  I am extremely fair skinned and thin, like you, and I remember all too well the ignorant remarks from people about my skin tone and weight.  I have gained 20 pounds since being diagnosed 10 years ago, although I am still fair skinned.  The weight will come for you and you will feel better but it doesn't happen overnight.  Hang in there and visit here often when the need to rant comes on.....we totally understand your frustration!


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#945881 Probiotics Not Always gluten-free

Posted by on 19 May 2015 - 11:26 AM

Sure!  I will have to check some of the brands at home tonight as I use different suppliers for different supplements.  But the probiotics I have used for years are below. They have been around for a long, long time and I have never had anything but good luck with these.  I would not feel this good and have such good blood work if they contained amounts of gluten that make Celiac's sick.  They can be found in the refrigerated section of most health food stores.  All the allergen information is given in the link.

 

I would say to people that if you are not feeling "right" or feel you have been glutened, low level or not, then of course you need to look at supplements and everything else.  But if you take supplements and feel good, then don't panic and doubt what you are taking.  Of course, this only works for people with symptoms or for those with positive blood work at diagnosis that can be measured, when in doubt.  But supplementing for a Celiac is normal and sometimes required so finding a good, safe supplement is not that hard.

 

I do not supplement for iron/ferritin anymore but when I did, this is what I used.  http://www.floraheal...er=F&prod_id=88  Make sure you have the one which is gluten free! (pictured)  There are 2 liquid versions and one is not gluten free.  It is a liquid that needs to be refrigerated once open and it tastes pretty good. It can stain teeth, though, as it is a liquid iron supplement so either brush or rinse your mouth after use.......or use a straw to bypass the choppers!

 

http://www.natureswa...ginal-180-Vcaps

 

 


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#945874 Probiotics Not Always gluten-free

Posted by on 19 May 2015 - 09:24 AM

I must be the only person who takes supplements and probiotics without issue.  I have been taking probiotics for about 25 years, both pre and post diagnosis and never had a problem.  I also take supplements because I have to.  Many Celiac's will have ongoing slight deficiencies of vitamins and minerals and without supplementation, that won't improve.  Even when healed, our absorptive powers are not those of people without Celiac Disease so don't automatically panic and think all supplements are not safe. I am very sensitive also and have never felt even the slightest bit sick after taking the brands I use.  My recent bloodwork was perfect so I know I am not getting glutened on a regular basis.

 

http://www.adoracalc...rition-info.php  These are fantastic.  How brilliant of someone to mix chocolate and calcium together in supplement form!  I am partial to the dark chocolate ones myself. With osteoporosis, I have to supplement calcium and this way is none too shabby....... ;)


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#944572 Labs After 3 Years gluten-free

Posted by on 23 April 2015 - 12:28 PM

You know you are healed when your cholesterol goes up.  ^_^

 

It took 10 years for me but finally, this year was the year that my cholesterol looks more like the rest of the population.  It was 166, non-fasting in 2013 and now?

201, fasting!!!!!!!!!  However, I was over the top pleased that the increase was mostly in my HDL.  That went from 59 to 82 so I don't even worry a bit about the 201 number. As I do not do endoscopies, seeing this increase must mean I am finally absorbing fats well.  So, for all those who think they will never heal......sometimes it takes a very long time but it does happen.  It just took a long time for me to ramp up that fat absorption!  ;)


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#943756 Haha...its Just ..sinking In! :d

Posted by on 09 April 2015 - 11:20 AM

So...I take it that being gluten free is NOT a reliable form of birth control???????  ^_^

 

Congratulations on your little gluten free bun in the oven and I wish you the easiest of pregnancies!  :)


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#943743 Thyroid

Posted by on 09 April 2015 - 07:56 AM

The TSH is Thyroid Stimulating Hormone and it is released by your pituitary gland.  It comes into play when it senses that thyroid hormone is either too low or too high.  I would suggest you take a look at this website: http://www.stopthethyroidmadness.com/  There is so much information on here it can make your head spin but there are different topics, relating to questions you may have on your thyroid.  Really good site for truthful information on dealing with thyroid disease.

 

Your T4 is one of the two thyroid hormones you produce.  The other is T3 and the T3 is the active form of thyroid hormone.  T4 is considered your storage level.  Your body will convert T3 to T4 and this is why most docs only prescribe T4.  It doesn't always work, for various reasons, so many people find relief with a natural dessicated hormone, which contains both T3 and T4.  This is what I take and it works well.  It is disappointing that they have only checked the T4 so I would try and broach the subject of having a full panel done.  Your antibody levels should be checked to see if you have Hashi's thyroid disease, as opposed to non-autoimmune thyroid disease. There is a difference and which hormone type you supplement with comes into play here.  But take a look at the website because it contains a wealth of knowledge about the thyroid.  You need to have some basic knowledge in order to make sure you are getting the right treatment.  You can come on here and ask if you have any specific questions about it.  We are not doctors but the people on here are very proactive with their thyroid issues and have good knowledge of it.  :)


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#942739 Is Coffee Allowed On Fasano's Gluten Contamination Elimination Diet?

Posted by on 23 March 2015 - 12:58 PM

The problem I have with this diet is that the foods they cut out are foods that would be irritating to the gut anyway, regardless of whether or not they are supposedly contaminated, so you will never be able to know for sure what caused the slower healing.  They allow fruit juices, which are incredibly irritating to the gut lining yet no coffee, no matter how pure, is allowed?  That's just plain silly.  If I drank a glass of OJ, I would be in a world of hurt yet whole bean coffee, that I grind myself, produces no problems, no matter how much I drink.

 

christiana....your symptoms of tingling are neurological in nature and those can take a VERY long time to clear up, no matter how clean your diet is.  Mine took 3 years and I was uber strict with my diet and cooked everything from scratch.  I also think that most of us continue to have sensitive stomachs, compared to the general population who are used to eating crap, so when you eat something with a lot of fiber in it, like popcorn, lentils and gluten-free oats, it might bother you, regardless of what happened before diagnosis.  You may not have noticed it before diagnosis because you weren't feeling good all over.  I did not pop with lactose intolerance, or at least didn't notice the symptoms, until 2 years into the gluten-free diet.  Certain things, to this day, will bother me and it's not gluten. For some of us, complete healing just takes a long time.


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