Seeking2012

  On 9/10/2015 at 7:19 PM, Maddi said:

Sorry to intrude but I have one question. Is it true that I have to have a seperate sponge for dishwashing my plates?? Bc I've been eating at my bf's and be doesn't have a dishwasher.... and we wash the plates by hand...

Yes. I don't understand why everyone else seems so lax on their CC standards here. Why did I bother to even make this thread?

From Open Original Shared Link

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– Use separate sponges for gluten and gluten-free dishes. Remember how I said that gluten is sticky (What happens when you mix flour and water? You get glue!)? It’ll stick to your sponge, especially if you’re cleaning out a bowl full of gluten-containing sticky pasta or something of that consistency. Then, if you were to use that same sponge on your gluten-free dish, you’ve wiped gluten all over that dish. I have a different-colored “gluten” sponge for these items, and the family knows to use that when they clean the few gluten-containing dishes that we sometimes use.

I also have different colored sponges. Mine are blue and hubby's are yellow.

  On 9/4/2015 at 11:18 PM, Maddi said:

While on gluten the symptoms that bothered me the most were neurological (my GI symptoms aren't super bad... just frequency but not the big D... and well the weight loss is very disturbing)... now I was glutened a few daus ago and I'm finally feeling better today (not 100% but at least I'm functioning... I'm painting the pantry!! Superrrrr happy bc before going gluten free I barely had energy to shower!! Even though I'm new to this diet and well my energy levels are still fluctuating throughout the day...at least I have some energy). Anyways does anyone here have more neurological symptoms than GI ones? I guess since I'm undiagnosed I'm trying to see if there's any way I could get diagnosed I have read about people being negative for a whileeeee before they test positive. Now I'm wondering about gluten ataxia. I've read about it and I know it causes reallyyyyyy bad symptoms mine are not so severe. Could ataxia cause milder symptoms like... tingling/burning/numbness in the extremedies, headaches, very bad dizziness even while laying down, and ankle pain? I have really bad ankle pain when I get glutened. I'm also feel very confused and words jump around when I'm reading and I honestly think I'm reading something but it doesn't make sense so I have to read it again for it to make sense (sometimes even read it 3 times!) And I am very clumsy. I hit walls...doors... tables..it's as if I can't calculate how close I actually am to these things. Also...how do you test for ataxia? Is the only option an MRI?

I'm one of those 90% neurological and 10% GI people.

Like you, I have tingling, numbness, etc in the extremities, headaches, dizziness, clumsiness, random pains in my body including ankles, but these symptoms are present even now that I've been gluten-free for over a year. Of course, they were worse when I was eating gluten (especially dizziness, clumsiness, headaches). One of the most obvious signs of an accidental glutening for me is a headache. First the headache comes, and then the characteristic sleepiness, brain fog, weakness, lack of energy, inability to think or concentrate or function at all, and the need to nap. In fact, I have had accidents because of my clumsiness and dizziness, including a disfiguring hematoma. Cannot read at all when glutened; not capable. Your symptoms sound very similar to Celiac, but based on your blood test and negative endoscopies, I would have to conclude that you do not have Celiac (it is something else).

Here is my belief based on everything I've read and heard up to this point about Celiac and autoimmune disease: Celiac is just one test that has been discovered to detect one form of an autoimmune disease related to the exposure to gluten; there may be other gluten-related forms of autoimmune diseases that are not yet discovered. You may be having problems that there is currently no blood test for. Trust your body; if you become ill every time you expose yourself to gluten, then that means that your body is having either an allergic or autoimmune reaction to the gluten. There are blood tests you can take that will show general autoimmunity; I would look into that.

I also believe, based on your low B12, D, and folic acid, and family history of hypo, that you may have other autoimmune issues going on, very likely thyroid if not others. You should immediately get a full thyroid panel:

TSH

Free T4 & Total T4

Free T3 & Total T3

Reverse T3

Thyroid Peroxidase TPO

Thyroglobulin Antibody

Vitamin B12

Vitamin D

Folic Acid

Iron

Funny how all these things seem to be connected. So many patterns. Seems like Celiac and hypo go together almost. I have high Thyroglobulin Antibody but T3 and T4 and TSH all normal...and GERD runs in my family too...

Also, you mentioned you took antibiotics. This is very important; antibiotics can destroy your immune system and cause autoimmune diseases in more susceptible people (we are in fact those people) if you do not restore your microbiome. You need to start a course of probiotics immediately and continue them indefinitely. The more I learn about how important the microbiome is, the more I realize the importance of supplementing with probiotics. 70% of our immune system lives in the gut; our friendly bacteria are part of every function of our bodies, not just the immune system, and killing them is the same as killing ourselves. I am currently using probiotics and I can testify that they help me in every way (neurologically and GI). I take one that has 34 strains and claims 100 billion CFUs.

  On 9/10/2015 at 6:14 PM, bartfull said:

But as we have all said, the OUTSIDE of the jug MAY be cc'd, IF he had smeared gluten all over his phone, which he probably didn't. But the water on the inside is NOT cc'd. If you're that worried you must be afraid to touch anything in your house because he also touched it. That's no way to live, and it's not necessary. You wash your hands before eating anything so there is absolutely nothing to be worried about.

True that the water on the inside is not CC. However, as I said, I like certain things to remain un-CC because my water jug is one of those things that I use to prepare my food. I use it in cooking and in refilling my water jug. If it was a "glutened" object, I would have to segregate it off from my other gluten-free items and treat it like one of my husband's food items, washing my hands after every contact. It gets tiresome. Is it really too much to ask for certain things to remain clean so that I can wash my hands 1 less time per day?

  On 9/10/2015 at 6:14 PM, kareng said:

Just an FYI to others who may be reading this - Bleach can't "kill" gluten.  In fact, plain dish or hand soap  and rubbing does a better job to release dirt like wheat than soaking in bleach. 

Actually, bleach will disintegrate the molecular structure of the protein molecule, thus disabling it from causing an immune reaction. A Celiac medical student who is a friend of mine told me this. Also, did you know that if you wash all of your dishes by hand with the same sponge, you are CCing all your dishes. Let's say you just washed a plate that was used to serve spaghetti, with normal wheat noodles. Then, you used that same sponge to wash the plate you are about to eat off of. You then eat your meal. You have just CCed yourself.

  On 9/10/2015 at 6:17 PM, StephanieL said:

If you are going to lick the handle or your hands after he touched it, sure.  If not, wash and carry on. 

Of course not, but what if I touch the handle to pour my water, and THEN I touch my gluten-free waffles? I will then CC myself. Why is this so hard for everyone to grasp?

I don't believe I overreacted. I believe he CC'ed my jug and I will bleach the handle when I get home. I like certain things to remain free of CC because I wash my hands enough as it is, you know, over 100 times per day, and especially when preparing my own food and when about to eat my own food. Had I been in a great mood this morning I may have laughed and thought it was funny, but my hormones are imbalanced and my mood has been quite poor lately and I'm seeking medical help for this.

If we as Celiac people didn't have to worry about CC, we would just be buying oatmeal and other non-wheat grains that are processed on the same equipment that's used to process wheat flour and not care in the least bit.

  On 9/10/2015 at 4:53 PM, kareng said:

 

But... you aren't eating his phone..... Just wipe it off before you use it or wash your hands?  Same with the outside of the jug.  Just wipe it off.  The amount of gluten that might have been on the phone and might have gotten on his fingers and maybe landed on the outside of a jug is so small and improbable.  

 

If you are going to be this extreme, you probably can't go out in public where someone might have crumbs on their clothes that might land on your clothes and then might land on your food later that day.  

 

So, what I am trying to say is - yes, you might be a bit over the top on this one.  But a husband should never talk like "You need to get your head out of your ass" to his wife!  

 

Actually there shouldn't be any doubt whatsoever that CC has occured between the wheat bread to his hands to his phone to my jug. And I don't eat in public much, in fact rarely. There are fewer than 5 restaurants that we go to, and every time we go, I realize there is a small chance of CC and I have to accept that when we eat out. But first time I get sick at a restaurant I never go back.

I have my own water jug filled with filtered water and I refill my water bottles with it. Our fridge has been so packed full lately that I haven't had any room in the fridge to put my water jug, so I left it out on the counter. It is labeled "gluten-free," which hubby knows means gluten-free. Well I told him this morning that there was no room for it in the fridge. We will be getting a bigger fridge "soon..."

Well, hubby decides to help me out by trying to fit it into the fridge...I said: "You just glutened my water jug."

He said: "No I didn't.

I said, "Did you touch your phone and then touch my water jug without washing your hands?"

He said: "You need to get your head out of your ass."

I said: "Don't talk to me right now."

He said: "We don't have to live in a clean-room environment!"

I didn't respond, and I'm very angry with him right now...

---------------------

Now, here's why this is, in my opinion, a glutening...he eats wheat bread and then handles his phone immediately after touching the bread with his hands. Therefore, his phone is totally glutened.

Now, who's right: him or me?

Oh god, the King Arthur recommendation was from heaven. Thanks everyone!!!!

Thanks for all the advice everyone. I've been getting better at avoiding accidental glutenings. I pretty much eat within certain strict brand names of foods and I don't go outside those brand names. I'm careful when I try a new brand. They key is being strict! But a few days ago I took a chance and ate some black eyed peas that were just the normal store brand and I got glutened. Where do we get gluten-free blackeyed peas?

Put them in the oven at 400 degrees F for 7 mins. Wala. That's what I'm doing at the moment.

Where do you get your gluten-free pizza meat toppings?

  On 12/27/2014 at 12:45 AM, Googles said:

I got food as gifts from my extended relatives. They often give food as gifts. Last year my relative searched a lot for a baking mix that went with a cookbook and was gluten free. But I don't think they really understand what gluten free means. This year everything she sent me food wise contained gluten. I am very thankful for the gifts that they gave me. I don't know if I should mention when I thank them for the gifts that they got me that I will be sharing the food with friends since I can't eat any of it. I don't want them to think I don't appreciate the gift, but I don't want them going and buying me food year after year that I can't eat. Any advice? Thanks. Just another piece of information. Since I live on the other side of the country I don't see these relatives so they don't understand about the whole gluten free thing as they haven't been part of that part of my life as I was diagnosed after I moved. 

Just email or facebook your relatives a list of safe brands (Bob's red mill gluten-free, Udi's, Dove, etc) or ask everyone to not give food as gifts.

I'm one of those Celiacs who never gets gastro symptoms; for me, they are all neurological. During an accidental glutening, I get intense fatigue, brain fog, sleepiness, inability to concentrate, a strong need to nap, tension headaches, etc. All of these symptoms make me useless and its basically a waiting game until I can crawl into bed. Thankfully, I work from home and make a part time income, and my husband is the breadwinner.

But if some financial emergency occured in our family and I had to get a job and make more money than I do now, he and I don't think I could do it. But I know there are many Celiacs out there that do. So what do you do when you get the same symptoms that I get? We all know that accidental glutenings happen. And what if it happens at work?

Any input appreciated.

Reporting back with nothing to report. So far, I have found a whole lot of nothing. This is unacceptable. I will continue looking.

  On 12/13/2014 at 7:37 PM, Serielda said:

I can say avoidance is the best method, eg eat at home to have better control of what is in your food. It took me awhile to do that but in my town we have a gluten free allergen free restaurant I <3. ! but after having to retool my diet getting rid of other grains I can't really go there. But as of once the problematic food item has been eaten, I go for kombucha for probiotics and avoid foods that could cross react.. I tend to eat lighter foods and grab as many zzzz's I can. plus peppermint tea helps chill me out. I wish there was a way to soften and shake it immediately, but alas nein, sadly.

I am determined to find an answer. I shall keep looking. I've contacted several organizations and will be getting in touch with Dr. Alessio Fasano's office on monday to see if they know of anything. I know about his medication for blocking the effects of zonulin but I'm not about to go on medication for the rest of my life. I need something that can be taken on an as-needed basis when accidental gluten exposure occures.

How do I stop the effects of being glutened after I've already been glutened? I want to stop the fatigue, achy muscles, tiredness, foggy brain right in their tracks after I've been accidentally glutened. How do I do that? Any vitamin? Supplement? Medication? Herb? Tea? Anyone know of anything that does this? Desperate for the answer.

It must be chocolate! I am a chocolate lover! What's your favorite birthday cake box mix? I don't want to make from scratch; too much hassle. Must come from a box, just add water, egg, butter, etc.

And what about icing? Can be chocolate or vanilla. What's the best? Has to come already made--don't want to bother making it myself.

My favorite sandwich bread so far out of all that I've tried from Canyon is the 7-grain. None of their other breads even comes close. Does anyone know a recipe for the 7-grain?

My husband and I have been thinking up new questions ever since my Celiac diagnosis. I'm glutened today so I may not make much sense. Can I get glutened from:

1. Eating eggs that come from chickens that were fed wheat
2. Eating meat that came from livestock that were fed wheat
3. Creams, lotions, skin products that I put on my skin that contain wheat
4. Bumping against someone who has eaten gluten

Other questions we have:

1. At what temperature is gluten "killed?"
2. Does bleach really kill gluten?
3. Does the dishwasher clean away all the gluten?
4. Can we "de-gluten" our stainless steel pots and pans (they have scratches in them)?
5. Can potatoes be cross contaminated? I'm talking about whole potatoes that you get in the bag at the grocery store in the produce section.
6. Which brand of spices should I switch to instead of McCormick, which seems to keep glutening me?

One final question for now. What ingredient do you think made sick in this Shepherd's Pie?

• Ground Beef
• Kraft shredded cheese
• Whole milk
• Butter
• Mahatma white rice (they told me that their rice will be non-CC unless it says processed in a facility that also processes wheat)
• Potatoes
• Tone's Garlic Powder
• Deep South Onion Powder
• Spice Supreme iodized salt
• Tone's Black Pepper
• McCormick "Roasted Garlic & Herb" (I think this is the culprit)

Thanks guys; any help is greatly appreciated. Sorry for such a long post.

  On 9/19/2014 at 2:49 PM, Shadowmaru said:

I have been eating as normal, to make sure I don't mess the test up, but it's hard. I'm also keeping a diary of what I eat and the symptoms...

 

But I am suffering for it right now. I ate before some things on a Pitta Bread.

 

30 minutes or less later:

 

Stomach Cramp, Dizzyness, Hot Flashes, Fatigue (Nearly fell asleep), Headache, Brain Fog, Bloating and then followed by Loose Stools, most stopped after 2 hours, except for the headache and stomach cramps.

 

The hot flashes are so strong though, it literally feels like lava coming from my chest to the top of my head, it's quite bizzare.

 

Stomach ache/cramps is still there though, I have had that all day.

 

So I have a month of this at least until we do more bloods.

You need to have these tests done:

Endomysial Antibody

Tissue Transglutaminase Antibody (tTG)

Immunoglobulin A

I recommend that you print that out and take it to your nurse/doctor/whoever and tell them that is what you want done. If they refuse or hem-haw around as they already have done, get another doctor. Those are the tests you need to answer your question of whether or not you have Celiac, and I think you do have it. Let us know what happens.

  On 9/17/2014 at 8:11 PM, aria said:

My twin sister was diagnosed with a severe form of celiac disease so I got tested an year ago showing no symptoms at all!My antibodies were totally negative (contrary to my sis who showed highly elevated antibodies) but my endoscopy showed patchy villous atrophy!I was told to go gluten free so I did for 7 months, nothing changed in my health so now once in a while I eat gluten (even a beer) and I show no problem. Is it possible I was misdiagnosed?Can a silent celiac become more sensitive on a strict gluten free diet?

What do you mean by "patchy" exactly?

I have been reading that Celiac disease and food intolerances are on the rise. You can take a look at my signature to see why I am fascinated and perhaps obsessed with this topic. I have been searching to find out why Celiac, autoimmune diseases, and "modern" diseases are on the rise. So here's what I've been reading from various health websites that are seeming to all say the same thing now:

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The overwhelming majority of scientific literature shows that glyphosate is highly toxic to human health. Glyphosate residues are now found in the main foods of the western diet, comprised primarily of sugar, corn, soy and wheat.

Looks like conventional corn is out for me! So what is glyphosate anyway?

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Glyphosate is the key ingredient used for weed control on genetically modified food crops such as corn, soy, wheat, and alfalfa. Glyphosate residue is not only present in these crops, but it is also in the animals that eat these crops. Glyphosate is in beef, pork, poultry, farm raised fish, and any other meat source that is fed GMO corn, wheat, soy, or alfalfa.

Wheat isn't yet a GMO food, but it has been bred countless times over the past several thousand years.

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Glyphosates are a very potent endocrine disruptor. It’s a half part per million. You see an inhibition for amytase and other functions in the endocrine hormone systems, not just for reproduction, but for thyroid function, pituitary function, any of those other levels

A half per per million is 0.5ppm. That is less than 1ppm. I wonder how many parts per million of glyphosate is present in a food that contains 20ppm of gluten?

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It is clear that glyphosate is not a benign chemical. Glyphosate interferes with enzymes in plants and microbes because of its ability to chelate (bind) trace metals and by its antibiotic action, which kills microorganisms. Other chemicals used in formulated products that contain glyphosate enhance the toxic effects of glyphosate.

Now this keeps getting more and more interesting with each quote I'm pasting here. I recall something that Dr. Alessio Fasano, founder of the Center for Celiac Research, said that really wraps all this together:
 

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“There must be some environmental factors that explain why most people [with the genetic predisposition] eat gluten all their lives and stay healthy, and others lose their tolerance. And it could happen at any time. Some people don’t become celiac until they are in their 70s. You’re not out of the woods at any age.

 

“The genome is like a marble block. What it will become in terms of a sculpture depends on the environment. Even if we inherit these genes they are not always functional or expressed.

 

“We also know that prevalence is rising and we’re in the midst of an epidemic. Based on our study it seems that prevalence has doubled every 15 years in North America. Why? I think it goes back to the microbiome. There are antibiotics, our diet has changed, we travel more. There have been so many changes in the past 50 years.”

I personally have read many papers published by Dr. Alessio Fasano and I recall that he believes that Celiac is triggered by an unfriendly change in the microbiome.

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“Can we identify the changes in the microbiome that make us unable to handle gluten?”

 

If you look at how the microbiome changes over time in people that have the genetic predisposition and go on to develop celiac disease, versus those that have the genetic predisposition but don’t develop celiac disease, you can try and pinpoint when, why and how these changes take place he says.

 

“And that’s exactly what we are doing right now with a larger scale study. Does the microbiome shift in months or years and can we intervene to re-establish order? That would be the Holy Grail.”

 

USA corn is considered toxic to other countries.

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China has rejected imports of U.S. corn, because of genetically modified content. It is now buying corn from Brazil. Nearly 1.45 million metric tons of corn was rejected, resulting in lost sales of $427 million for the US economy.

 

Both Japan and South Korea cancelled orders and banned imports of what they believed was GMO-contaminated wheat from Oregon. Russia banned importation of GMO-contaminated corn. Canada banned the import of GMO-contaminated papayas from Hawaii.

Are any of you coming to the same conclusions as me? If not, why not?

  On 4/9/2013 at 3:24 PM, CommonTater said:

We just called Kraft because I've been sick for the past 3 days after eating Kraft cheese. My husband spoke to them and they told him it is NOT gluten free. They said IF the ingredients show 'Color' or 'flavor' or 'Spice it' could contain trace amounts of gluten because they get those ingredients from another source.

What specific product was it?

  On 9/3/2014 at 5:15 PM, bartfull said:

Never tried their hot dog buns but I assume they are a white bread type of bun. Their seven-grain bread is more like those mult-grain breads we used to buy from the grocery store. You know, the dark breads with all the nutty bits in them? Lots of flavor and great texture.

Ok well I guess I'll give Canyon another try, with the loaf bread this time...

  On 9/2/2014 at 7:14 PM, GottaSki said:

Nooooo....lol, I can save them a bundle...simply purchase Sheetrock and have it cut into bread sized pieces. I hear the shelf life is identical too

But doesn't sheetrock have gluten? I'm actually serious here...lol...

I tried Canyon hot dog buns. Worst thing ever. Texture was perfect but there was absolutely no flavor whatsoever. Are their loaf breads different? I'm put off of Canyon because of my bad hot dog bun experience.