Super Sensitive And Frustrated With Many Questions

[sylviaann]

I have been gluten-free since last October since my Celiac Specialist in Atlanta and I were highly suspicious of my symptoms (GI and neurological). During my gluten-free "learning curve" (recently) , I discovered that my myoclonus (Limb jerking & twitching at sleep onset) is induced by many food products that are cross contaminated (i.e. Lay's potato chips, Amy's soups & frozen dinners). My myoclonus stopped for the first time last week since November 2006, after I cooked and ate all unprocessed meals for four days straight.

I was glutened by beer residue two days later and re-poisoned last night (possibly by a coconut Larabar or McCormick's Garlic & Herb seasoning). As many of you can relate, I feel like I am tied to the house and the grocery store. I am supposed to travel to my in-laws in July and they are clueless about cross-contamination. My diet will probably consist of Boost drinks, bananas, and nuts because I refuse to get poisoned anymore if I can help it. My condition has put a strain on my marriage because my husband is doesn't like dealing with all the intricacies of my extreme sensitivity, epecially eating out and traveling.

I am so tired of making duplicate phone calls to manufacturers, to inquire about cross-contamination issues. My diet is becoming more and more limited. I have stopped eating Boar's head lunch meats for fear of cross-contamination after I became suspicious when keeping my food diary.

Has anyone who is SUPER SENSITIVE eaten or used any of the following products and had a reaction?

Bush's Baked Beans, Bush's Red Kidney Beans, Bush's Black beans, Bush's Great Northern Beans?

Hormel Black Label Bacon

Rice Chex Cereal

Jennie O Oven Ready Frozen Turkey Breast

Cumberland Gap or Smithfield Hams??

Has anyone (SUPER SENSITIVE GROUP) had a reaction when drinking Parrot Bay Brand Coconut Rum, Smirnoff plain vodka, Gatorade (Rain), plain coke, sprite, or wines?

Has anyone (SUPER SENSITIVE GROUP) had a reaction after using/eating baked goods made with Bob's Red Mill All Purpose gluten-free flour, Bob's Tapioca Flour, or Bob's Sorghum flour? I am ready to rechallenge my baking but am very apprehensive.

I need to eat more fiber and sources of iron. Any suggestions for cooking lentils or other beans if I can't trust the canned products?

Thanks a million,

Sylvia G

Florida

[Gemini]

I have been gluten-free since last October since my Celiac Specialist in Atlanta and I were highly suspicious of my symptoms (GI and neurological). During my gluten-free "learning curve" (recently) , I discovered that my myoclonus (Limb jerking & twitching at sleep onset) is induced by many food products that are cross contaminated (i.e. Lay's potato chips, Amy's soups & frozen dinners). My myoclonus stopped for the first time last week since November 2006, after I cooked and ate all unprocessed meals for four days straight.

I was glutened by beer residue two days later and re-poisoned last night (possibly by a coconut Larabar or McCormick's Garlic & Herb seasoning). As many of you can relate, I feel like I am tied to the house and the grocery store. I am supposed to travel to my in-laws in July and they are clueless about cross-contamination. My diet will probably consist of Boost drinks, bananas, and nuts because I refuse to get poisoned anymore if I can help it. My condition has put a strain on my marriage because my husband is doesn't like dealing with all the intricacies of my extreme sensitivity, epecially eating out and traveling.

I am so tired of making duplicate phone calls to manufacturers, to inquire about cross-contamination issues. My diet is becoming more and more limited. I have stopped eating Boar's head lunch meats for fear of cross-contamination after I became suspicious when keeping my food diary.

Has anyone who is SUPER SENSITIVE eaten or used any of the following products and had a reaction?

Bush's Baked Beans, Bush's Red Kidney Beans, Bush's Black beans, Bush's Great Northern Beans?

Hormel Black Label Bacon

Rice Chex Cereal

Jennie O Oven Ready Frozen Turkey Breast

Cumberland Gap or Smithfield Hams??

Has anyone (SUPER SENSITIVE GROUP) had a reaction when drinking Parrot Bay Brand Coconut Rum, Smirnoff plain vodka, Gatorade (Rain), plain coke, sprite, or wines?

Has anyone (SUPER SENSITIVE GROUP) had a reaction after using/eating baked goods made with Bob's Red Mill All Purpose gluten-free flour, Bob's Tapioca Flour, or Bob's Sorghum flour? I am ready to rechallenge my baking but am very apprehensive.

I need to eat more fiber and sources of iron. Any suggestions for cooking lentils or other beans if I can't trust the canned products?

Thanks a million,

Sylvia G

Florida

Have you considered the idea that it may not be gluten CC that is posing a problem for you but you may have additional food allergies or intolerances? Many people become too focused on gluten and think that is the culprit but because you seem to have so many triggers, I doubt it may be gluten. Lots of people have a problem with grains in general.

I eat Amy's frozen dinners and have never had any issues with those. I was end stage Celiac at time of diagnosis so would react if I had been glutened. They are pretty careful about CC also and build their brand around the gluten-free status so it would be unlikely that they would be CC'd....too many people would be complaining about getting sick if it were a big problem for the company. I also do not eat many processed foods so can't help with the rest of your list but I would look into testing for additional allergies/intolerances. Otherwise, your frustration will increase if you have to cut too many foods out. I hope you feel better!

[sylviaann]

Have you considered the idea that it may not be gluten CC that is posing a problem for you but you may have additional food allergies or intolerances? Many people become too focused on gluten and think that is the culprit but because you seem to have so many triggers, I doubt it may be gluten. Lots of people have a problem with grains in general.

I eat Amy's frozen dinners and have never had any issues with those. I was end stage Celiac at time of diagnosis so would react if I had been glutened. They are pretty careful about CC also and build their brand around the gluten-free status so it would be unlikely that they would be CC'd....too many people would be complaining about getting sick if it were a big problem for the company. I also do not eat many processed foods so can't help with the rest of your list but I would look into testing for additional allergies/intolerances. Otherwise, your frustration will increase if you have to cut too many foods out. I hope you feel better!

Thank you for your input.

I am certain that Amy's "gluten-free" soups and the frozen dinner I ate last month caused my myoclonus to worsen because I read the back of the cans and the box (the next day). Both products had the "disclaimer"....manufactured in a faciilty that produces products made with wheat, eggs, soy, etc.

My jerking is definitely caused by gluten ingestion. I have discovered that I have an intolerance to corn products (i.e. corn tortilla chips, corn tortillas) and am suspicious about soy so I have been staying from products containing these ingredients for the past month. I was glutened by a Neutrogena hair conditioner two months ago (contains barley & oats) so my Celiac Specialist and I agree my myoclonus is coming from gluten ingestion. I have read that several forum members have suffered from contamination from Amy's because they do not produce their food products on dedicated gluten-free production lines. I sent a message to Amy's about my problem and they have never followed up with me.

SylviaG

Florida

[Salax]

I agree with Gemini. Many of us have issues with other foods. I would recommend a food journal and elimination diet.

Best of luck-

[sylviaann]

I agree with Gemini. Many of us have issues with other foods. I would recommend a food journal and elimination diet.

Best of luck-

Thank you..I have been keeping a food diary/Journal for over two months. This is how I arrived at my corn product intolerance and possible soy intolerance. I do not want to keep jerking at night as it has ruined my life for the past 2.5 years. Gluten ingestion is the primary culprit for inducing my myoclonus.

I am extremely sensitive to products that are labeled as "gluten free" but produced in a facility with cross contamination potential.

SylviaG

Family History of pancreatic cancer (father-survived five years), and IBD (Aunt had Chrone's Disease and I have Ulcerative Colitis)

-Diagnosed with mononucleosis-age 19, GI problems including weight loss occurred as a result of mono for 2-3 years.

- Suffered from alternating bowel symptoms in my late 20's; GI tests inconclusive; doctor advised me that I had IBS.

- Diagnosed with ulcerative colitis at age 34

1997-1999- Followed by a leading Celiac Specialist In Atlanta (blood labs in 1999 and biopsy were negative).

November 2006- Developed Upper respiratory infection while vactioning at Disney's Animal Kingdom Hotel/Resort. Started suffering from neurological symptoms (severe myoclonus & twiching at sleep onset) in the middle of an ulcerative colitis flare. During the next two years- worsening lower GI problems, brain fog, night sweats, achy joints and back, weight loss, osteopenia and iron deficiency anemia while living in Florida. I saw nine physicians (retested for celiac-blood labs) for numerous tests but continued to suffer with severe myoclonus (severe insomnia as a result) and weight loss with no correct diagnosis.

2007- Diagnosed with low ferritin (6) and was evaluated by my OBGYN in Georgia. Had an endometrial ablation in June 2007 and was diagnosed with complex hyperplasia with nuclear atypia (high risk for uterine cancer). Had LAVH surgery (kept ovaries) in September 2007. Myoclonus and GI problems continued several months after surgery. Iron infusion ordered in May 2008. Forced to start taking a low dose of Klonopin in order to stop limb movement and sleep.

I saw my former Celiac Specialist on CNN promoting awareness for Celiac Disease, started researching symptoms and contacted her office in 2008. I could barely function as a result of extreme sleep deprivation.

Oct. 2008- Re-evaluated by my wonderful Celiac Specialist in Atlanta for the possibility of triggered Celiac Disease or gluten sensitivity. She advised me that 10% of celiac patients will test negative repeatedly due to a selective IGA deficiency. She placed me on a gluten free diet. She diagnosed me with lactose intolerance and I started taking a lactose enzyme. Her differential diagnosis: Celiac Disease vs. Gluten Sensitivity

Feb 2008- Evaluated briefly by a disinterested neurologist in Sarasota. He did not want to take the time to properly evaluate my myoclonus and said myoclonus can be normal with hormones at your age! He suggested "it was all in my head" because he probably did not understand Celiac Disease and would rather be out on his boat. He does not order any tests (no MRI's or other scans).

April 2009- My Celiac Specialist is strongly suspicious I may have Celiac Disease with secondary myoclonus caused by the disease. My myoclonus worsens when I use any cosmetic product, medication or consume food containing gluten. I also cannot eat most processed food due to cross-contamination issues. I am also intolerant to certain corn products and am questioning soy. She wants all siblings and grandchildren to be screened for Celiac Disease

May 14, 2009- My myoclonus is almost gone and I have started to sleep without waking up after switching to all unprocessed food in the past three days.

"We cannot control our genetics .....but we do not have to settle for having someone telling us it is all "in our head." Our managed care/healthcare system has forced our physician population to be micromanaged; taking away their opportunity to focus on spending sufficient time to properly evaluate patients. Everyone deserves proper medical evaluation, respect and timely diagnosis of all health conditions... not a pill as a bandaid. Your own best advocate is yourself."

Sylviaann-age 46

Florida

Gluten free, lactose intolerant, Lactose free since October 2008; Intolerant to corn

[weluvgators]

I really understand your frustration! There are a few things in your list of foods that we do not consume because I sm not confident that they would be gluten free enough for us. Some of the items on your list are ones that we consider as gluten contaminants in our diet, but it is hard to find stuff that is truly, honest to goodness totally gluten free. You can definitely make yourself crazy trying to understand it all.

And, I totally understand the frustration of KNOWING it is a gluten reaction and not wanting to believe it! Well, it seems to absurd to believe . . . without feeling a little bit crazy.

When I was getting frustrated, I ordered some EZ Gluten tests and identified some of our culprits. In addition, it helped me relax a bit more with some other products that I would wonder about! It also enabled me to better understand the symptoms related to low level gluten trace exposures. I know we still have some lingering products, but I also feel confident that we are moving in the right direction.

Hope it helps!

[sylviaann]

I really understand your frustration! There are a few things in your list of foods that we do not consume because I sm not confident that they would be gluten free enough for us. Some of the items on your list are ones that we consider as gluten contaminants in our diet, but it is hard to find stuff that is truly, honest to goodness totally gluten free. You can definitely make yourself crazy trying to understand it all.

And, I totally understand the frustration of KNOWING it is a gluten reaction and not wanting to believe it! Well, it seems to absurd to believe . . . without feeling a little bit crazy.

When I was getting frustrated, I ordered some EZ Gluten tests and identified some of our culprits. In addition, it helped me relax a bit more with some other products that I would wonder about! It also enabled me to better understand the symptoms related to low level gluten trace exposures. I know we still have some lingering products, but I also feel confident that we are moving in the right direction.

Hope it helps!

I definitely believe I am having reactions to cross contamination caused by gluten. My doubting husband is finally realizing it as well!

What are EZ Gluten tests? How long have they been on the market and how accurate or proven are they?

Thanks a million

SylviaG.

Florida

[GFinDC]

Hi,

I kind of wonder if you have had your vitamin levels checked recently? Could it be a B vitamin problem?

2nd thing to consider. Many processed foods have preservatives added. Some of us react to sulfites and I have seen some posters say that have problems with nitrates. So, this is another whole category of possibly problem ingredients you eliminated when you got off the processed foods for a few days. Preservatives are in so many processed foods these days.

[sylviaann]

Hi,

I kind of wonder if you have had your vitamin levels checked recently? Could it be a B vitamin problem?

2nd thing to consider. Many processed foods have preservatives added. Some of us react to sulfites and I have seen some posters say that have problems with nitrates. So, this is another whole category of possibly problem ingredients you eliminated when you got off the processed foods for a few days. Preservatives are in so many processed foods these days.

Thank you for your knowledgable insight. Nitrates are a definite possibility and I have shyed away from bacon, ham and lunch meats during the last month. I am currently taking methalcobalamin (sublingual form of B12) so hopefully vitamin B12 is not an issue. I probably need to order a nutrient panel since it has been about seven months since my last check and find a good nutritionist.

Many thanks again,

SylviaG

[mamaw]

I don't doubt your medical ills & it is very hard at times to know what is happening to our bodies.

When I first went gluten-free I did not react a lot but now after years I'm super sensitive. I don't drink wine because of sulphites ( a few can be had without sulphites) I don't do anything with MSG.....

I don't do well with Bob's Red Mill.......

I do think it takes going through very rough times when our body is trying to heal its self. You know ,sorta like cancer, the chemo can be worse than the cancer for some. Sometimes the brain signals just aren't firing at peak until it figures out what is not an invader & what is.

Many of us go on a very bland diet & limit what we eat....fresh fruits, vegetables , rice & maybe a good piece of wild caught fish.That is when I know I feel the best........

I'm sorry this is straining your marriage. Marriage is a partnership Of the good , the bad, & the ugly.....when my hubby would get discouraged with my ills (I have many)I would always say I'm sorry I know you didn't actually bargain for this but it is this for now or else I could be dead, you choose! now, after years he loves gluten-free food....he even made gluten-free pancakes for his office! Everyone loved them...

I would also suggest a work-up (blood) . Just because your taking sl B-12 doesn't mean you are absorbing it properly...many of us need the B-12 injections...

I find also that I can eat a certain food by itself & have no problems but if I add something else in with a food it bothers me. I have yet to figure out why this happens but for sure it does...

I hope you get to feeling better soon . I agree with some other posters that I too think more is going on than celiac...

blessings

mamaw

[Gemini]

Thank you for your input.

I am certain that Amy's "gluten-free" soups and the frozen dinner I ate last month caused my myoclonus to worsen because I read the back of the cans and the box (the next day). Both products had the "disclaimer"....manufactured in a faciilty that produces products made with wheat, eggs, soy, etc.

My jerking is definitely caused by gluten ingestion. I have discovered that I have an intolerance to corn products (i.e. corn tortilla chips, corn tortillas) and am suspicious about soy so I have been staying from products containing these ingredients for the past month. I was glutened by a Neutrogena hair conditioner two months ago (contains barley & oats) so my Celiac Specialist and I agree my myoclonus is coming from gluten ingestion. I have read that several forum members have suffered from contamination from Amy's because they do not produce their food products on dedicated gluten-free production lines. I sent a message to Amy's about my problem and they have never followed up with me.

SylviaG

Florida

Many companies produce non-gluten free items in addition to gluten-free products but follow strict cleaning procedures in between runs. Most companies will elaborate on their practices if questioned because they obviously want to keep their customers. Amy's satisfied that requirement when I talked to them so I feel confident they use good cleaning practices. In general, if a food advertises themselves to be gluten free but uses shared facilities, they make the extra effort to avoid CC. If I see a product in the store which appears gluten-free and uses shared facilities, but they do not label the product as gluten-free, I do not buy it. They are not making the claim it is gluten-free so it probably isn't.

I am gluten-free and dairy light but have no problems with Amy's foods. I get very ill from the smallest bit of gluten so I am confident that Amy's has no CC. You mentioned that you have a problem with soy and corn so that could be the root cause of your problem. Having that many intolerances or sensitivites is going to make it difficult for you to eat any processed foods, which you found out yourself. I really think gluten is not the culprit. If Amy's food were CC'd on a regular basis, they wouldn't be selling to Celiacs because no one would buy them.

The disclaimer is just for legal purposes.....everyone uses disclaimers nowadays.

It sounds like you have vitamin deficiencies also and that can a long time to clear up. Maybe a processed food free diet and supplements

will do the trick but I would recommend having your vitamin levels run with a doctor. I would have thought the Celiac doc would have re-run your panels before placing you on the diet as your last ones were done 10 years ago. By this time, they may have shown positive.

It really sounds like you do have celiac disease.....your symptoms are right in line with the disease. I hope you find some answers and relief.

[weluvgators]

I definitely believe I am having reactions to cross contamination caused by gluten. My doubting husband is finally realizing it as well!

What are EZ Gluten tests? How long have they been on the market and how accurate or proven are they?

Thanks a million

SylviaG.

Florida

I understand this way of thinking. I spent quite a bit of time chasing other foods and NORMALIZING my low level trace reactions. In the end, I came to recognize that I needed to do the gluten elimination better. I have the benefit of having three super sensitive kids that have not normalized what gluten does to them. They also have other food issues, but gluten is a primary cause of our issues. It took me a long time to understand that we needed to do gluten free better. I seem to be a minority voice here, but I wanted to share that we have experiences that seem similar to yours - known gluten reactions to unknown gluten sources! I get so frustrated that I spent so much time spinning in circles instead of recognizing and accepting the prevalence of gluten in the food chain.

A gluten free label means nothing to us. A manufacturer's response may or may not mean anything. I have written here in the past that I got multiple positive tests for a gluten free labeled product that I was eating every day. I did not have obvious symptoms, but I feel so much better having eliminated the product. My kids that are much more apparent in their reactions STOPPED having the reactions when I cut out the EZ Gluten positive tested food. The manufacturer gave me good lip service (it was the *perfect* thing to say - had I not had the multiple positive test results to support my EXPERIENCE), but the fact remains that their product tested positive for gluten. They did not follow up with any response other than more lip service when we started to get into details. It is frustrating!! They may very well be below the 20 ppm proposed food labeling limit, but we were having reactions that resolved with elimination of the product.

You can find more information about EZ Gluten tests here: Open Original Shared Link or search here, on celiac.org, for some limited conversation about those of us that have found the information useful, as well as those who do not agree with the usefulness of the testing.

The bottom line remains for us: we use the tests, eliminate gluten positive foods, and symptoms resolve. It has been SO fabulous to see these lingering symptoms resolve!! It has also been fabulous that we are better able to handle venturing out in the real world because we have reduced our overall gluten load. And it has been fabulous to have a way to help me understand what was going on for us! And, I have gained a MUCH better understanding of where the trace gluten may be lurking.

I absolutely agree that checking nutrient levels and exploring other avenues are wise ideas, but eliminating all traces of gluten (and other offending foods) may also help as you strive to achieve wellness. Best wishes!

[lovegrov]

Smirnoff's. Corn. How the heck wlould that be a celiac reaction?

richard

[Sailing Girl]

There's no doubt in my mind that you're reacting to GLUTEN. You are not crazy, and I honestly doubt you have other intolerances.

You may not know that the FDA currently does not regulate how much gluten a product can include before it can be labeled "gluten-free." The agency has proposed allowing 20 parts per million (ppm). That means a product can have up to 20ppm and still be labeled gluten free. Manufacturers currently are following this 20PPM standard voluntarily. Some manufacturers do better than others in getting products well below that standard.

I'm an extremely sensitive Celiac -- I react to around 1ppm. I am not intolerant to any other foods, however. It sounds to me as if you're in the same situation. Therefore, you may not be able to eat many/most of the processed foods labeled "gluten free," because the vast majority (confirmed by EZ Gluten testing) still contain some small amount of gluten.

I have used the EZ Gluten test to test many of the products on your list, along with many, many other processed foods and ingredients. I've been stunned at how many foods labeled "gluten free" still contain detectable levels of gluten. The tests have enabled me to eliminate many "guaranteed safe" foods, condiments and spices that were making me sick.

My experience parallels that of weluvgators -- gluten is everywhere, company assurances mean nothing. A given company may be trying hard (most of them do), but the raw ingredients may have been contaminated before even reaching that company's factory. You need to test for yourself to find out which foods you're eating are contaminated. Once you start doing that and eliminating the foods that fail the test, you should improve quite rapidly.

[sylviaann]

I understand this way of thinking. I spent quite a bit of time chasing other foods and NORMALIZING my low level trace reactions. In the end, I came to recognize that I needed to do the gluten elimination better. I have the benefit of having three super sensitive kids that have not normalized what gluten does to them. They also have other food issues, but gluten is a primary cause of our issues. It took me a long time to understand that we needed to do gluten free better. I seem to be a minority voice here, but I wanted to share that we have experiences that seem similar to yours - known gluten reactions to unknown gluten sources! I get so frustrated that I spent so much time spinning in circles instead of recognizing and accepting the prevalence of gluten in the food chain.

A gluten free label means nothing to us. A manufacturer's response may or may not mean anything. I have written here in the past that I got multiple positive tests for a gluten free labeled product that I was eating every day. I did not have obvious symptoms, but I feel so much better having eliminated the product. My kids that are much more apparent in their reactions STOPPED having the reactions when I cut out the EZ Gluten positive tested food. The manufacturer gave me good lip service (it was the *perfect* thing to say - had I not had the multiple positive test results to support my EXPERIENCE), but the fact remains that their product tested positive for gluten. They did not follow up with any response other than more lip service when we started to get into details. It is frustrating!! They may very well be below the 20 ppm proposed food labeling limit, but we were having reactions that resolved with elimination of the product.

You can find more information about EZ Gluten tests here: Open Original Shared Link or search here, on celiac.org, for some limited conversation about those of us that have found the information useful, as well as those who do not agree with the usefulness of the testing.

The bottom line remains for us: we use the tests, eliminate gluten positive foods, and symptoms resolve. It has been SO fabulous to see these lingering symptoms resolve!! It has also been fabulous that we are better able to handle venturing out in the real world because we have reduced our overall gluten load. And it has been fabulous to have a way to help me understand what was going on for us! And, I have gained a MUCH better understanding of where the trace gluten may be lurking.

I absolutely agree that checking nutrient levels and exploring other avenues are wise ideas, but eliminating all traces of gluten (and other offending foods) may also help as you strive to achieve wellness. Best wishes!

Thank you..I agree with you that the root of my problem is cutting out the hidden sources of gluten which are causing me frustration and ongoing dehabilitating symptoms. Are these tests expensive?

[sylviaann]

There's no doubt in my mind that you're reacting to GLUTEN. You are not crazy, and I honestly doubt you have other intolerances.

You may not know that the FDA currently does not regulate how much gluten a product can include before it can be labeled "gluten-free." The agency has proposed allowing 20 parts per million (ppm). That means a product can have up to 20ppm and still be labeled gluten free. Manufacturers currently are following this 20PPM standard voluntarily. Some manufacturers do better than others in getting products well below that standard.

I'm an extremely sensitive Celiac -- I react to around 1ppm. I am not intolerant to any other foods, however. It sounds to me as if you're in the same situation. Therefore, you may not be able to eat many/most of the processed foods labeled "gluten free," because the vast majority (confirmed by EZ Gluten testing) still contain some small amount of gluten.

I have used the EZ Gluten test to test many of the products on your list, along with many, many other processed foods and ingredients. I've been stunned at how many foods labeled "gluten free" still contain detectable levels of gluten. The tests have enabled me to eliminate many "guaranteed safe" foods, condiments and spices that were making me sick.

My experience parallels that of weluvgators -- gluten is everywhere, company assurances mean nothing. A given company may be trying hard (most of them do), but the raw ingredients may have been contaminated before even reaching that company's factory. You need to test for yourself to find out which foods you're eating are contaminated. Once you start doing that and eliminating the foods that fail the test, you should improve quite rapidly.

Thank you so much I am supersensitive and Gluten is my primary problem. I am concerned that several posters in this thread are not familiar with super sensitive gluten reactions vs. other food intolerances. MY myoclonus is caused by Celiac Disease, not by other food intolerances. I agree with you and am aware about the FDA's current stand on allowing manufacturers to label products containing low levels of gluten. I have been a victim of the deceptive marketing practices used by several major mainstream food manufacturers. As you know, this has created the frustration that exists when wasting time calling manufacturers and getting "gray" answers (standard disclaimers to CYA).

On the Flip side, if most mainstream companies have small amounts of gluten in their products, I would have to pretty much avoid anything processed anyway, except for a few gluten free companies (i.e Enjoy Life, Kinnick bread) so would I be wasting my $$ my time purchasing this test?

How long have you been using the EZ Gluten tests? How accurate have you found then to be and how expensive are they? Do they have a money back guarantee?

Thanks a million!

sylviag

[sylviaann]

Smirnoff's. Corn. How the heck wlould that be a celiac reaction?

richard

I have read where many posters on this forum (some Super Sensitive Celiacs) have encountered problems drinking distilled liquor. Some have even commented on reactions from certain wines. These reacions could possibly be from other food sensitivities but I was curious to know if anyone who is Gluten Sensitive had a reaction from drinking distilled liquors like the ones I mentioned.

[happygirl]

Sylvia, I just wanted to say that I hope you find some answers and relief.

[ravenwoodglass]

I am also a supersensitive celiac and I can definately symptathize. Folks that are not as sensitive do not seem to understand it. I also get neuro symptoms and have no doubt when I have been glutened. If the amount is small enough it may not be enough to give me a severe gut reaction but the neuro symptoms will come back. Just as there is a wide difference in the severity of symptoms prediagnosis there is also a wide difference in the amount of CC that we can tolerate. For myself, and it sounds like you also, that threshold is very low.

I avoid sodas or anything that has carmel coloring, that is made by heating grains and often it is gluten grains that they use. I will react to sodas that have carmel coloring and for a time everything seemed to be okay with Sprite but due to reactivation of neuro issues I avoid that now also. I also have had reactions to Amy's products, yes I know they 'clean the lines' and all that but my body tells me that they are not always safe. I am safest if I avoid products that have the made in a facility CYA statement and I also check any new product even if it doesn't carry that warning.

Like you I get very specific symptoms from gluten, I am intolerant to soy but the symptoms that I get from soy are not the same symptoms that I get from gluten.

Although many are confident that it is only the protein that we react to I personally am not so sure about that. Research into celiac is not something that has been going on for a long time and there are misconceptions about celiac have been proven wrong. The best examples being that celiac only causes gut illness and that celiac children 'outgrow' it. I am sure that in time more knowledge about this disease will show that supposed stuff that we don't react to will change. The best example I can think of is the insistance that distilled gluten grains are safe, they most certainly are not safe for me and most likely are not safe for you either. As to the question about Smirnoff, that as stated is supposed to be made from corn, although with corn now being sky high in price due to it's use as a biofuel that may change. I would suspect you may have been reacting to the mixer in the drink rather than the vodka itself but I could be wrong. I use potato based vodka when I do drink it and have no issues as long as it is mixed with a safe mixer. It is not something I would ever order in a bar because of the high risk of CC that is present from everything from the speed bar sodas to reuse of a shot glass that was used for a gluten grain alcohol.

While I agree that it is not a bad idea to get vitamin and mineral levels checked chances are if you are seeing a gluten reaction that is exactly what you are having. Also a quick note on the sublingual B12, the sublingual form of B12 is absorbed in the mouth throught the mucous membranes and directly into the bloodstream. B12 shots will give you a higher dose in one sitting but the sublingual is just as effective.

[LuvMoosic4life]

I amnot even as sensitive as a lot of people on here but I have reacted to rice chex (the new gluten-free ones) and bushes baked beans.... I normally dont have a prob with plain unprocced rice, but legumes do bother me, so not sure if its CC or not. But processsed foods in general make me feel like crap. And I feel for you..... I really wish everyone still ate like cavemen and that this world didnt rely on processed food!!! ugh!

[sylviaann]

I am also a supersensitive celiac and I can definately symptathize. Folks that are not as sensitive do not seem to understand it. I also get neuro symptoms and have no doubt when I have been glutened. If the amount is small enough it may not be enough to give me a severe gut reaction but the neuro symptoms will come back. Just as there is a wide difference in the severity of symptoms prediagnosis there is also a wide difference in the amount of CC that we can tolerate. For myself, and it sounds like you also, that threshold is very low.

I avoid sodas or anything that has carmel coloring, that is made by heating grains and often it is gluten grains that they use. I will react to sodas that have carmel coloring and for a time everything seemed to be okay with Sprite but due to reactivation of neuro issues I avoid that now also. I also have had reactions to Amy's products, yes I know they 'clean the lines' and all that but my body tells me that they are not always safe. I am safest if I avoid products that have the made in a facility CYA statement and I also check any new product even if it doesn't carry that warning.

Like you I get very specific symptoms from gluten, I am intolerant to soy but the symptoms that I get from soy are not the same symptoms that I get from gluten.

Although many are confident that it is only the protein that we react to I personally am not so sure about that. Research into celiac is not something that has been going on for a long time and there are misconceptions about celiac have been proven wrong. The best examples being that celiac only causes gut illness and that celiac children 'outgrow' it. I am sure that in time more knowledge about this disease will show that supposed stuff that we don't react to will change. The best example I can think of is the insistance that distilled gluten grains are safe, they most certainly are not safe for me and most likely are not safe for you either. As to the question about Smirnoff, that as stated is supposed to be made from corn, although with corn now being sky high in price due to it's use as a biofuel that may change. I would suspect you may have been reacting to the mixer in the drink rather than the vodka itself but I could be wrong. I use potato based vodka when I do drink it and have no issues as long as it is mixed with a safe mixer. It is not something I would ever order in a bar because of the high risk of CC that is present from everything from the speed bar sodas to reuse of a shot glass that was used for a gluten grain alcohol.

While I agree that it is not a bad idea to get vitamin and mineral levels checked chances are if you are seeing a gluten reaction that is exactly what you are having. Also a quick note on the sublingual B12, the sublingual form of B12 is absorbed in the mouth throught the mucous membranes and directly into the bloodstream. B12 shots will give you a higher dose in one sitting but the sublingual is just as effective.

Thank you Patti I really appreciate your knowledge and experience with my specific problem. I know you are super sensitive, have neuro reactions llike me and was hoping you would reply to my message.

I have not reacted to Smirnoff but am hesitant to drink it. I am fearful of eating anything processed right now. I would love to have an occasional glass of wine (no red wines as I have heard many people having reactions) or Parrot Bay coconut rum (it is supposedly gluten-free) with sprite or OJ. What is your vodka of choice?Coke claims their products are gluten-free but I noticed their disclaimer about gluten levels under 20ppm. Sounds like I should steer clear of caramel colorings. Have you been able to have a safe glass of wine at a restaurant or even a glass of water? Do you react to Bob's Red Mill Flours.? I was using the All Purpose, Sorghum, and tapioca for baking. I started over "from scratch" with my diet last week and was eating all unprocessed food for several days, when my myoclonus went away. I am trying to slowly reintroduce other foods back into my diet and would like to bake again. This is what brought my numerous product questions to the forum.

Thanks again for your support Patti!

Sylviaann

[sylviaann]

I amnot even as sensitive as a lot of people on here but I have reacted to rice chex (the new gluten-free ones) and bushes baked beans.... I normally dont have a prob with plain unprocced rice, but legumes do bother me, so not sure if its CC or not. But processsed foods in general make me feel like crap. And I feel for you..... I really wish everyone still ate like cavemen and that this world didnt rely on processed food!!! ugh!

I will steer clear of Rice Chex and Bush's baked beans for the time being. Are you able to safely eat any other gluten-free cereals (hot or cold cereals) made by gluten-free companies such as "Enjoy For Life" or Kinnick brand cereals?

Sylviaann

[ravenwoodglass]

Thank you Patti I really appreciate your knowledge and experience with my specific problem. I know you are super sensitive, have neuro reactions llike me and was hoping you would reply to my message.

I have not reacted to Smirnoff but am hesitant to drink it. I am fearful of eating anything processed right now. I would love to have an occasional glass of wine (no red wines as I have heard many people having reactions) or Parrot Bay coconut rum (it is supposedly gluten-free) with sprite or OJ. What is your vodka of choice?Coke claims their products are gluten-free but I noticed their disclaimer about gluten levels under 20ppm. Sounds like I should steer clear of caramel colorings. Have you been able to have a safe glass of wine at a restaurant or even a glass of water? Do you react to Bob's Red Mill Flours.? I was using the All Purpose, Sorghum, and tapioca for baking. I started over "from scratch" with my diet last week and was eating all unprocessed food for several days, when my myoclonus went away. I am trying to slowly reintroduce other foods back into my diet and would like to bake again. This is what brought my numerous product questions to the forum.

Thanks again for your support Patti!

Sylviaann

Hi Sylviaann

I am actually Krista but that's okay I should put that in my signature but have never gotten around to it.

I believe the vodka that I used started with an L but I don't remember the name cause I rarely drink nowadays. It was clearly labeled as potatoe vodka. For Rum I only drink Bacardi clear and steer away from any of the flavored ones so I can't give an answer to the Parrot Bay. I have found some safe sodas in my health food store and I have to go there today so I will look and see what brand they are and post back, sodas are another thing I don't drink often but a rum and coke sounds real good.

I use Pamela's baking mix but that does have buttermilk in it and I don't know whether you tolerate dairy. I did test as having casein issues but haven't had any noticeable reaction from it. My other favorite flour that is just a flour with no rising in it is Tom Sawyer brand. It contains white rice flour, sweet rice flour, tapioca flour, xanthan gum and unflavored gelatin, no soy, wheat or dairy. It makes great scalloped potatoes and is good for dredging meats and such as well as baking. Their website is www.glutenfreeflour.com if you can't find it locally you might get info on where to get it from the site. I hope this helps and am glad to hear the myclonus has let up for you.

I have been able to have a safe glass of wine at a restaurant but I am a PITA and insist that they rinse the glass before wine goes into it and if I have a second glass I make them use the same glass. I drink only bottled water at a restaurant after being glutened by bread crumbs that I didn't notice in a water glass until it was to late. It is not uncommon for a place to put water pitchers and glasses at the waitress station and some stations also place the breads in a warmer there also so I think that was the practice at that restaurant.

Krista

[sylviaann]

Hi Sylviaann

I am actually Krista but that's okay I should put that in my signature but have never gotten around to it.

I believe the vodka that I used started with an L but I don't remember the name cause I rarely drink nowadays. It was clearly labeled as potatoe vodka. For Rum I only drink Bacardi clear and steer away from any of the flavored ones so I can't give an answer to the Parrot Bay. I have found some safe sodas in my health food store and I have to go there today so I will look and see what brand they are and post back, sodas are another thing I don't drink often but a rum and coke sounds real good.

I use Pamela's baking mix but that does have buttermilk in it and I don't know whether you tolerate dairy. I did test as having casein issues but haven't had any noticeable reaction from it. My other favorite flour that is just a flour with no rising in it is Tom Sawyer brand. It contains white rice flour, sweet rice flour, tapioca flour, xanthan gum and unflavored gelatin, no soy, wheat or dairy. It makes great scalloped potatoes and is good for dredging meats and such as well as baking. Their website is www.glutenfreeflour.com if you can't find it locally you might get info on where to get it from the site. I hope this helps and am glad to hear the myclonus has let up for you.

I have been able to have a safe glass of wine at a restaurant but I am a PITA and insist that they rinse the glass before wine goes into it and if I have a second glass I make them use the same glass. I drink only bottled water at a restaurant after being glutened by bread crumbs that I didn't notice in a water glass until it was to late. It is not uncommon for a place to put water pitchers and glasses at the waitress station and some stations also place the breads in a warmer there also so I think that was the practice at that restaurant.

Krista

You are a Lifesaver Krista!! Thank you for all the great info and I appreciate you sharing the safe soda brands (when you have the opportunity

I have become "anal" about cross contamination..I sat in a restaurant last Sunday and would not touch my water glass because I was thinking like you. Next time I will ask for a bottle so I can feel comfortable.

Warmest regards,

Sylviaann

Florida

[dhd2000]

"May 14, 2009- My myoclonus is almost gone and I have started to sleep without waking up after switching to all unprocessed food in the past three days. "

Hi Sylvieanne. I am not super sensitive, so I can't answer some of the questions, but I have reacted to Amy's, so I don't eat them any more. I also react to processed corn like High Fructose Corn Syrup and malto dextrin, but am fine with organic corn or organic corn chips. I'm reading a great book you should consider: The Unhealthy Truth" by Robyn O'Brien. It's about processed foods and may answer a lot of your remaining questions. Good luck!

Dee in NC