Super Sensitive And Frustrated With Many Questions

[Gemini]

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.

Maybe if I say this one more time, you may hear what I am saying. I am more than familiar with a gluten reaction as it's the same one all Celiacs have regardless of how people like to label themselves. I was one week away from a feeding tube at time of diagnosis so if there was any gluten in the processed foods mentioned in your post, I would know as well as you would. I stated my intolerances and am extremely well versed in other food intolerances as well. There are people out there who have so many food issues, grains and processed foods will not be tolerated by them and it has squat little to do with gluten. Don't assume what others say is wrong because it doesn't agree with what you'd like to hear. If all these manufacturers had enough residual gluten in their products to spark reactions in many people, they would be out of business. Many Celiacs can eat these foods and not react so we all cannot be wrong.

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?

I have been diagnosed for 4 years now and have yet to see any deceptive marketing practices

in the food chain relating to Celiac. It might help if you stop referring to yourself as a victim.

If you have multiple food intolerances and are trying to figure them all out, you are going to run into problems with some foods as you try to see what you can eat but don't go blaming the food industry. It isn't going to be easy by any means but if you keep insisting their food is a problem because of deceptive marketing, you'll never get to the root of your problem and will keep spinning in place. I have always had good luck talking with manufacturers and do not feel they were paying me lip service. As I haven't gotten sick and am "super sensitive" to gluten (although I never use that label....I'm a Celiac and cannot have any gluten, period), I have to believe what they told me was true. I want more companies to expand their product line and offer us more safe choices but they won't if people keep saying they use deceptive marketing practices. Who wants to deal with that liability?

BY the way, I eat little to no mainstream, processed foods. Whatever little, processed food I do eat is from a gluten-free company or one who takes their gluten-free line seriously and uses good cleaning practices. I have found this to be successful for me but many people have trouble cutting out the processed food or eating very little of it. It can be difficult but it works.

[sylviaann]

"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

Amy's has cross contamination issues for sure. I will check out the book!

Thank you Dee

[sylviaann]

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.

My nutrient levels were checked last November by Spectracell Labs (intracellular levels were checked).

My main deficiencies were zinc and antioxidants. My B12 levels were normal but I chose to take B12 on my own. I have been taking several gluten-free supplements (recommended by the doctor and lab) since that time. I have been tracking my diet daily and I was glutened in Atlanta after eating two Amy's products last month. Both products were manufactured in a facility that manufactures other products containing wheat. No food manufacturer can guarantee that a product is 100% gluten-free unless they process their products in a facility that solely manufactures gluten-free products and their suppliers sign a contract attesting to this strict guideline. Enjoy Life Foods and Kinnikinnick are two examples of food manufacturers that are 100% gluten free. Kinnikinnick does produce other products contaning eggs, pecans, almonds, and sesame seeds but I have not reacted to their breads. Amy's is a great company but at the present time, cannot guarantee or accomodate Celiacs who are super sensitive. My myoclonus was triggered by cross contamination from their products. It took me a year to figure this out by process of elimination.

Sylviaann

Florida

[sylviaann]

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.

Thank you for your concerns. I was retested for Celiac Disease in 2007 by an endocrinologist in Florida and tested negative. My Celiac Specialist in Atlanta (who is nationally recognized as an authority on Celiac Disease) could clearly see that my symptoms (weight loss, iron deficiency anemia, myoclonus, high thyroid autoantibodies, etc.) all pointed to my grossly underdiagnosed condition. She advised me that 10% of celiacs are IGA deficient and the endocrinologist in Florida never tested me for IGA deficiency in 2007. She informed me that many Celiacs are IGA deficient and will test negative on the blood labs over and over as a result.

She knew that I had driven eight hours to see her and was barely able to make it as I was non-functional from being ill. I trust her judgement and based on our last visit last month, she strongly suspects I am a Celiac. She wants all my siblings and grandchildren to be tested asap by a qualified specialist in their respective state.

Sylviaann

Florida

[dilettantesteph]

I am also super sensitive. The only cereal that I have found that I can tolerate is Pocono's cream of buckwheat cereal by Birkett Mills. They are an exclusive buckwheat facility and I think the farmers only grow buckwheat to avoid cross contamination. I find it very important to my health to have a place where super sensitive celiacs can share information like that.

[sylviaann]

I am also super sensitive. The only cereal that I have found that I can tolerate is Pocono's cream of buckwheat cereal by Birkett Mills. They are an exclusive buckwheat facility and I think the farmers only grow buckwheat to avoid cross contamination. I find it very important to my health to have a place where super sensitive celiacs can share information like that.

Many thanks for sharing info on your safe cereal product! I have been searching for a safe, nutritious cereal and will check into this for myself. As you can relate, I never imagined that I would be so sensitive to gluten.. I never had reactions to food products in my life until this illness was triggered. My doctor educated me on this disease in 1998, so after it was triggered 2.5 years ago and I finally figured out what had occurred, I was already mentally prepared for eating gluten free. However, I was not prepared for the "fallout" from extreme sensitivity and difficulties adjusting to it.

Warmest Regards,

Sylviaann

Florida

[Jestgar]

Have you ever considered that your hypersensitivity might be caused by something other than Celiac? Someone once posted that she discovered her hypersensitivity was directly related to Lyme.

Instead of buying expensive test kits, your time might be better spent reassessing all of your body systems to see if there is something else going on that is enhancing your sensitivity.

Find the cause instead of treating the symptoms.

[sylviaann]

Have you ever considered that your hypersensitivity might be caused by something other than Celiac? Someone once posted that she discovered her hypersensitivity was directly related to Lyme.

Instead of buying expensive test kits, your time might be better spent reassessing all of your body systems to see if there is something else going on that is enhancing your sensitivity.

Find the cause instead of treating the symptoms.

I agree with you. I already know the cause-Celiac Disease. It has been 2.5 years of myoclonus Hell, a stack of tests that I managed, extensive reserach and nine doctors later, I have confirmed this problem because I pursued returning to my former physician in Atlanta (a leading Celiac Specialist) and diaried an elimination diet. Google this...

The neurology and neuropathology of coeliac disease. You will find an article from Pubmed (a leading medical publication) discussing neurological syndromes associated with Celiac Disease, including what I have (Myoclonus), caused by any ingestion of gluten containing products.

Neurological caused by Celiac Disease are becoming more the norm but many patients are being treated by doctors for their symptoms, instead of properly diagnosing they are Celiacs.

Sylviaann

Florida

[jerseyangel]

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?

Hi Sylviaann

I'm super duper sensitive and make no apologies for it. It's a difficult situation to be in since all the "gluten-free rules" just don't seem to apply to us. While Celiac affects us all the same, it causes such varied symptoms that it's hard to compare one of us to another.

After 4 years, I've settled into a comfortable pattern of eating mostly whole, natural foods like meat, fruit, veggies, rice, a little dairy, and nuts. I use a few gluten-free specialty foods and very few mainstream foods. I figured out which mainstream foods I could tolerate by trial and error.

What you need to remember is that just because one Celiac is ok with a certain food, this does not necessarily mean that you will be too. There are many supposed gluten-free foods that I can't tolerate that others report no problems with--and a few that I'm fine with and others report they are not.

For instance--Amy's and Bob's Red Mill. Many here can eat their products with no issues--I can not, and I'm not the only one. That is not to say they aren't just fine for those who tolerate them, but obviously they have just enough gluten residue to cause us to react.

I went through a period where I didn't understand why I couldn't eat some foods that were labeled gluten-free without worry. I came to realize and accept that if there's a minute amount of gluten in there I will react. It's as simple as that. There is much here I can't relate to-- so don't feel alone.

I also have non-GI symptoms that come with accidental cross contamination such as anxiety, elevated liver enzymes (documented), tingling, and headaches. There is still a lot that is not known about Celiac--while I think it's a wonderful thing to have a place such as this forum to compare notes and share what works/doesn't work--I hope that we can all be respectful of each other so everyone feels free to come forward and engage in conversation.

Sylviaann--I'm so glad you decided to post

[sylviaann]

I agree with you. I already know the cause-Celiac Disease. It has been 2.5 years of myoclonus Hell, a stack of tests that I managed, extensive reserach and nine doctors later, I have confirmed this problem because I pursued returning to my former physician in Atlanta (a leading Celiac Specialist) and diaried an elimination diet. Google this...

The neurology and neuropathology of coeliac disease. You will find an article from Pubmed (a leading medical publication) discussing neurological syndromes associated with Celiac Disease, including what I have (Myoclonus), caused by any ingestion of gluten containing products.

Neurological caused by Celiac Disease are becoming more the norm but many patients are being treated by doctors for their symptoms, instead of properly diagnosing they are Celiacs.

Sylviaann

Florida

Are you familar with the "Blaylock Wellness Report" written by a prominent neurologist? It is a monthly on-line publication and a friend of mine recently sent me this month's copy because Dr. Blaylock's feature article is about celiac disease..here is an excerpt from it....

When Immune cells Attack.....

Celiac disease can be at the root of

neurological disorders that occur when

the immune system becomes confused,

and immune cells and antibodies attack

certain parts of the brain. While this

theory (called molecular mimicry) has a

lot of evidence behind it, newer evidence

suggests that the real damage is caused

by activation of the brain

[sylviaann]

Hi Sylviaann

I'm super duper sensitive and make no apologies for it. It's a difficult situation to be in since all the "gluten-free rules" just don't seem to apply to us. While Celiac affects us all the same, it causes such varied symptoms that it's hard to compare one of us to another.

After 4 years, I've settled into a comfortable pattern of eating mostly whole, natural foods like meat, fruit, veggies, rice, a little dairy, and nuts. I use a few gluten-free specialty foods and very few mainstream foods. I figured out which mainstream foods I could tolerate by trial and error.

What you need to remember is that just because one Celiac is ok with a certain food, this does not necessarily mean that you will be too. There are many supposed gluten-free foods that I can't tolerate that others report no problems with--and a few that I'm fine with and others report they are not.

For instance--Amy's and Bob's Red Mill. Many here can eat their products with no issues--I can not, and I'm not the only one. That is not to say they aren't just fine for those who tolerate them, but obviously they have just enough gluten residue to cause us to react.

I went through a period where I didn't understand why I couldn't eat some foods that were labeled gluten-free without worry. I came to realize and accept that if there's a minute amount of gluten in there I will react. It's as simple as that. There is much here I can't relate to-- so don't feel alone.

I also have non-GI symptoms that come with accidental cross contamination such as anxiety, elevated liver enzymes (documented), and headaches. There is still a lot that is not known about Celiac--while I think it's a wonderful thing to have a place such as this forum to compare notes and share what works/doesn't work--I hope that we can all be respectful of each other so everyone feels free to come forward and engage in conversation.

Sylviaann--I'm so glad you decided to post

Thank you Patti,

I believe we have similar sensitivities. I was glutened by my husband's beer residue last Friday night and it triggered my myoclonus for two nights and I had a horrible headache all day on Sunday.

Every person is different and I believe that many Celiacs can eat Amy's and other mainstream products safely. I have come to realize during the past month that I will not fall into that category. What nuts are safe for you (free of cross contamination)? I can eat Planters sunflower seeds safely but the company just discontinued their small package I purchased at Publix here in Florida. I think Planters appears to be diligent but I would love to know of other safe nut brands as an option. I drank Gatorade (Rain) in the middle of the night lst night and woke up this morning with my heart racing.

The intent of my post was to elicit response from the Super Sensitive group but I have come to realize that each person has a different definition of "Super Sensitive". Since I twitch and jerk for several nights if I consume a drop of gluten or get cross contaminated, I consider this to be super sensitive.

Thank you Patti and hopefully I will e-mail you in the near future to share ideas.

Warmest regards,

Sylviaann

Florida

[jerseyangel]

What nuts are safe for you (free of cross contamination)?

Other than nuts in the shell that I crack myself, I stick to a store brand that I get here in the Houston area at HEB called Hill Country Fare. I don't know if you have HEB in Florida, though. I tend to have problems with many mainstream nuts.

[Jestgar]

I agree with you. I already know the cause-Celiac Disease. It has been 2.5 years of myoclonus Hell, a stack of tests that I managed, extensive reserach and nine doctors later, I have confirmed this problem because I pursued returning to my former physician in Atlanta (a leading Celiac Specialist) and diaried an elimination diet. Google this...

The neurology and neuropathology of coeliac disease. You will find an article from Pubmed (a leading medical publication) discussing neurological syndromes associated with Celiac Disease, including what I have (Myoclonus), caused by any ingestion of gluten containing products.

Neurological caused by Celiac Disease are becoming more the norm but many patients are being treated by doctors for their symptoms, instead of properly diagnosing they are Celiacs.

Sylviaann

Florida

That doesn't mean that something else isn't making it worse.

[sylviaann]

Other than nuts in the shell that I crack myself, I stick to a store brand that I get here in the Houston area at HEB called Hill Country Fare. I don't know if you have HEB in Florida, though. I tend to have problems with many mainstream nuts.

I am from originally from Savannah, Georgia so I guess I will have to start purchasing bags of pecans and break out the old nutcracker!! What childhood memories that will bring back! I will also check with Whole Foods to see what they might have.

Thanks again Patti,

Sylvia

[ravenwoodglass]

Are you familar with the "Blaylock Wellness Report" written by a prominent neurologist? It is a monthly on-line publication and a friend of mine recently sent me this month's copy because Dr. Blaylock's feature article is about celiac disease..here is an excerpt from it....

When Immune cells Attack.....

Celiac disease can be at the root of

neurological disorders that occur when

the immune system becomes confused,

and immune cells and antibodies attack

certain parts of the brain. While this

theory (called molecular mimicry) has a

lot of evidence behind it, newer evidence

suggests that the real damage is caused

by activation of the brain

[Salax]

That doesn't mean that something else isn't making it worse.

I agree with you. I had the same problem. I stopped eating gluten and still I got sick. Until I finally realized I needed to research and do a food journal. I realized it was dairy and took it out..woot! I wasn't sick after eating at all. I think that Jestgar has a very valid point. Even though your lets say...the most sensitive celiac in the world, doesn't mean you don't have other food intolerances or allergies. And you might not, but I think you need to consider that you might and either prove yourself wrong or right. Just my 2 cents, we all just want to help any way we can.

I think honestly you might need to back off the processed foods and start fresh with meat, veggies and fruit & water. Slowly bring those other things back into your life after some healing has occured. Then you'll see what is going on with your body.

Best of luck!

[sylviaann]

Thanks for posting this. I am a celiac who had neuro issues for almost 30 years before the gut stuff hit it was 15 years after the GI stuff appeared before I was diagnosed. This information is much appretiated.

You are very welcome! A friend of mine sent me the report (he is a celiac and subscribes to Dr. Blaylock's monthly reports). I have forwarded copies of the full report to several friends who are suspicious they may have family members who are having symptoms. I also intend to copy and send to a few of my doctors. If you would like me to forward the full report to you (it is several pages), please e-mail me (through my celiac.com address) and send me your e-mail address where I can forward the link.

It is a fantastic article...and a great tool for me to educate my husband, who did not really understand the complexities of this disease.

Warmest Regards,

Sylviaann

[jerseyangel]

Even though your lets say...the most sensitive celiac in the world, doesn't mean you don't have other food intolerances or allergies.

Most definitely! An elimination diet coupled with a detailed food journal can uncover any additional intolerances. For some, this can take some time--for me it was around 6 months and I discovered I was also intolerant to several other foods--a couple of which affect me worse than gluten (tapioca and legumes).

I sought the help of an allergist/immunologist who did skin testing for classic allergies and then recommended the elimination diet. Sylviaann, I noticed you have kept a food diary--have you ever done an elimination diet?

[happygirl]

For those that are interested, a good collection of neurological-Celiac info can be found Open Original Shared Link .

Sylvia, I think I know who your doctor is and that doctor is very highly recommended. I'm happy you are in such good hands. Hang in there.

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

I think it is important for everyone to remember to respect the other members on the board. What is true for one member may not be the same experience for another member.

[sylviaann]

Most definitely! An elimination diet coupled with a detailed food journal can uncover any additional intolerances. For some, this can take some time--for me it was around 6 months and I discovered I was also intolerant to several other foods--a couple of which affect me worse than gluten (tapioca and legumes).

I sought the help of an allergist/immunologist who did skin testing for classic allergies and then recommended the elimination diet. Sylviaann, I noticed you have kept a food diary--have you ever done an elimination diet?

I have been working on it for the past few months and already have figured out that I am intolerant to corn tortilla chips and gluten-free corn tortillas. I have also eliminated soy (i.e. worchester sauce, gluten-free terriyaki & soy sauce), Soy lecithin (wrong spelling) as it appears to bother me (found in many chocolates). I have not had regular milk products in six months except small amounts of gluten-free cheese and gluten-free plain yogurt during the past month. I drink Pacific Brand Vanilla Rice Milk since I became lactose intolerant from gluten and take a lactose enzyme daily.

[Salax]

Very cool then that you have those nailed down. Us celiac's seems to always have more than one intolerance, huh. Hehe.

Have you tried almond milk or hemp milk, those might be an option for you too. Not sure if you do almonds (again some of us can't, I can't do them whole..diverticulitis). Also too, I noticed that I am super sensitive to even the smallest amount casein. I didn't realize this until after I kissed my hubby after he ate cheese and got instant sick..weird, I know.

[sylviaann]

For those that are interested, a good collection of neurological-Celiac info can be found Open Original Shared Link .

Sylvia, I think I know who your doctor is and that doctor is very highly recommended. I'm happy you are in such good hands. Hang in there.

Thank you..you know she is Dr. R. and I feel like I could write a book ( as many of us could) on what has transpired in the past ten years. I met Dr. R. at a business luncheon in 1998 when I was working in Atlanta and I feel like there was divine intervention at hand when we met. I believe my father, who passed away from pancreatic cancer in 2003 (after surviving for five years) helped me find my way back to her. I Dr. R. and I we have both learned so much from this and will continue to do so

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

I think it is important for everyone to remember to respect the other members on the board. What is true for one member may not be the same experience for another member.

[sylviaann]

Very cool then that you have those nailed down. Us celiac's seems to always have more than one intolerance, huh. Hehe.

Have you tried almond milk or hemp milk, those might be an option for you too. Not sure if you do almonds (again some of us can't, I can't do them whole..diverticulitis). Also too, I noticed that I am super sensitive to even the smallest amount casein. I didn't realize this until after I kissed my hubby after he ate cheese and got instant sick..weird, I know.

I do not think it is weird that you got sick from kissing your husband, since the same thing happened to me!! I was jerking & twitching for two nights-which kept me up with no sleep!! from my husband's beer residue last Friday night. I wish I knew about casein..since my more immediate reaction (myoclonus) occurs when I am drifting off to sleep (day or night), it is difficult to pinpoint the cheese (right now anyway). Does almond milk taste good?? I really like and trust the Pacific brand vanilla rice milk. I also have GI problems but they are not immediate... I was diagnosed many years ago with ulcerative colits/proctitis so I have battled that on and off for years. It is common to find patients with Celiac disease misdiagnosed with UC or Chrone's Disease (my aunt passed away from complications of this).

Sylviaann

Florida

[Salax]

I like almond milk, it's my favorite milk. I would recommend it. If you are going to try it, try not to think of it as it should taste as cows milk, because you'll be expecting cows milk taste and that could mess ya up..you know like when you go to drink pepsi/coke and it's diet... so it's not anything like cows milk. I personally like it better. I get the vanilla sweetend because personally it tastes better, the chocolate is good too. Kinda of like a chocolate covered almond ground up to milk.

[jerseyangel]

Even though I can tolerate some dairy again, I still like almond milk. I use Pacific--and I love the vanilla