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jerseyangel

"Super Sensitive" Celiacs.....

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Can anyone who is super sensitive tolerate Eden Organic's Tamari Soy Sauce?

I can't, I can't do soy!!! :lol:

Just had to answer Steph!!!

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Ugh. I could use a little "boost"- I've recently been mysteriously glutened three times in a row- last night after trying a new white wine at a restaurant. I shouldn't complain because this is after a year or more of feeling MOSTLY pretty damn good... Do you guys still find it is often a mystery? There is no question when it's gluten or something that behaves exactly like it. Could it be I can't even be in an environment where I might breathe it in? (Like my car with the windows open while my niece and nephew and son munch gluten in the backseat?)

I guess I just need my chin chucked 'cause I'm ready to...ggrrrr.....

thanks,

lisa...at least the weather's still nice here in Maine.....scowl.

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I am super sensitive, and really don't have trouble being around others with gluten, I just keep my distance. I rarely take chances, even in the grocery stores, I make a wide path around the bakeries. Wine alone makes me sick, I can't drink any alcohol anymore.

It's good you have done so well so far...keep it up.

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I'm looking for polenta? Does anyone use it and what brand? I don't care for the stuff in the tube. The only ground corn product I've found that doesn't make me feel a little funky is Maseca but it's more of a corn flour and not course enough for polenta.

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Hi,

I bought my own countertop grain milling machine and now I make my own polenta, rice flour, bean flours, etc. For polenta I just put popcorn kernels through the machine and grind it at a course setting (I actually like to use Orville Redenbacher popcorn...but any popcorn will do). I don't live in the US...so I am not sure where you can buy these things. I looked them up on the internet and found this link to a place that has pictures and descriptions of different kinds of mills. They are a bit pricey...but so worth it. I have one that looks just like the Wolfgang model. And as for making polenta: grind the popcorn kernels. Then add to boiling water (about 1 cup ground corn for 2 cups water). Turn down the heat to a simmer and stir, stir, stir for about 20 minutes. Add a pinch of salt and some olive oil. If you can have dairy, try with butter and cheese, or add some cream to the final stirring. You can also do the same with rice flour. Yum!

http://www.canningpantry.com/grain-mills.html

I'm looking for polenta? Does anyone use it and what brand? I don't care for the stuff in the tube. The only ground corn product I've found that doesn't make me feel a little funky is Maseca but it's more of a corn flour and not course enough for polenta.
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Thanks gabby! I hadn't thought about using a grain mill. I have one for my Kitchen Aid and have never used it. I think I'll dust it off.

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Guest missmyrtle

My day:

I offered to take my friend to the dental hospital as she is terrified of the whole thing. Having just recovered from dinner guest splashing soy sauce around in a non attentive moment I was feeling pretty gorgeously normal until......the only cafe's around were fast food joints and a flash looking Thai so I went with the latter and three waitresses listened and nodded and smiled and assured me that yes, steamed vegetables and steamed fish were a sure thing and I really stressed the point in a polite way.

So it is now and I have cried for hours and hurt badly as you would not fathom what was at the bottom of my steamed, "NO SAUCE AT ALL", veggies? Yep, battered fish and oyster sauce.

So I took an hour before feeling well enough to go to the counter. The waitress started crying and said they were so sorry and not to pay. I started crying too and my belly was swelling by this point so I got into a huge lecture and website info was exchanged and I hope they learn but doubt it. I might as well have eaten a loaf of white bread and feel so very sick and am a very sensitive celiac to start with so who knows how long the pain and swelling will last and I do sometimes feel that being a hermit and never taking the smallest risk is the only way. I HATE THIS pain so much and its awful to leave the house as one person and then turn into a monster a few hours later.

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I'm so sorry. I don't dare eat at restaurants any more. You make me feel less insane.

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So I am super sensitive and in fact have severe neurological symptoms if I inhale gluten. I know some of you have mentioned you have had similar reactions from inhaled gluten and I need to know does it get better after you heal? Will I always react so severely and to nothing at all? I find myself in a position that I need to go back to work but I really can't be in an office setting so I am wondering how I could get a potential employer to make accommodations for me to be a virtual employee and what I should say about whether this is permanent or something that might get better over time?

I was diagnosed 1 1/2 years ago and finally following an even stricter version of SCD I am beginning to feel good again and finally able to function. But my world is still pretty limited because anywhere I go in public I have to be careful of gluten and I first get a blinding headache that tells me I am being exposed and must leave immediately. If I leave the area my head begins to clear but if I linger too long I become very ill.

Before anyone replies that inhaling gluten can't possibly cause these symptoms please restrain yourself. Not believing my reaction does not add any value to my question or my situation. And I am glad for those of you who can't imagine this reaction because it means you don't have this kind of an issue. I want to hear from the folks who also have issues with inhaled gluten causing severe neurological issues like blinding headache, problems with cognition, memory, language then motor skills culminating in an overwhelming need to sleep as if drugged (and GI symptoms set in within 12-24 hrs).

And I guess I need some tips on how I can live with this type of reaction and still make a living for my son and I.

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I havnt been diagnosed celiac and I am pretty new to this but i have just realised yesterday that i am very sensitive too.

I had a reaction yesterday and the only thing it could have been was the paracetamol. I rang the company and to my surprise i found out it has corn in it!!

I think i cant be reacting to it because its 71.4mg per 650mg tablet (4 tablets would be 214.2mg). But i think i did have a reaction. I have stopped taking the paracetamol last night and sleep really well.

I was very very sick, i was bed bound for most of the 10 years i was sick, i agree i think this makes you more sensitive.

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Labbot--I would never tell a person that something like this couldn't happen...no one knows for sure, and those who will tell you that it absolutely can't happen, are those who do not have this type of reaction. Many gluten intolerant walk around with their heads buried in the sand, thinking that the 20ppm of gluten in their "gluten free" foods can't hurt them...we are the ones proving it can. I would love to not be so super sensitive, yet, we may be the ones much better off in the long run.

I was very sensitive to chemicals, inhaled, for some time. They made me very ill... severe neurological issues like blinding headache, problems with cognition, memory, language then motor skills...the need to sleep never hit me, I had insomnia. This has finally gotten better for me, lets hope it's just a stage for you too.

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I react to inhaled gluten, too. I always get a nasty/ headache when I get glutened, so, that's also my typical reaction. This only happened to me once though, when I used regular wheat flour early on. I was sick the rest of the day. I learned my lesson and have not touched wheat flour since... so I can't tell you if it's better or not. Seems like there has been research done on inhaled gluten...

However, I don't get these symptoms when I am around baked goods, if that's what you are dealing with. Sorry I can't help you more on that. :(

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I react to inhaled gluten--say wheat flour in the air but not to the smell of baked foods containing gluten. I'm the nutty Celaic who loves the smell of freshly baked bread :P

My reactions to inhaled gluten are the same as when I'm accidently cross contaminated by foods--mostly GI symptoms. I also get anxious, cranky, clumsy and lethargic. Often the first sign is a headache at the base of my skull the next morning.

After 4 years, I can't say that I'm any less sensitive, but my reactions are somewhat milder and don't last as long. It does not take much at all for me to react, though.

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I too react to inhaled gluten. My symptoms are generally what you mention labbott. The fatigue, headaches, etc. start within an hour and the GI issues start 6-12 hours later. I also get intense muscle twitching and have joint pain for a week or so.

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And I guess I need some tips on how I can live with this type of reaction and still make a living for my son and I.

I am also supersensitive and facing the same issues you are due to a nasty divorce. Somehow my exhusband and his new girlfriend think that some miracle will happen and after struggling since my diagnosis and trying to work outside the home and repeatedly becoming very ill everything will magically go away once we are divorced and I will be able to work again. Yea right. My lawyer literally forced me to apply for disability and we are hoping that will come through as that will help a bit especially with the insurance and possibly even a lower cost apartment. I have been doing a lot of looking and research into what I can do and not have to leave my home to do it. There are some things that can be done. I have upped my selling on internet auction sites. If you have a 'good eye' thrift stores, the salvation army and yard sales can provide stuff that you can resell. Sometimes stores will have sales for new items at up to 75% off and those can be resold on the auctions sites. I am also looking into stuff like medical transcription and coding. Both skills can be done at times at home or in an office small enough to not have to worry as much about the gluten issue. You may also be able to get some finacial aid to help cover the cost of the courses and the courses usually only take about 3 months to do from your computer at home. Also look at skills you may have that could add some extra money, do you sew or do any crafts? Small shops will take your items on consignment at no cost and just take a bit of the sale price. If you have a suitable home you can also think of doing daycare. Many areas have certification classes that can be taken for little or no cost that would allow you to take more than 2 kids into your home either before or after school and all day for little ones. If your home is large enough you could also think about taking in foster children that might have dietary restrictions that would make them hard to place. The state will give you a stipend to care for and feed them and will also cover their medical expenses. Hopefully others will respond also with some ideas. Good luck and I hope both you and I are able to come up with something that will help keep the roofs over our heads and $6 a loaf bread in our cupboards.

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Ravenwoodglass We are in a bit of the same boat. My husband has decided that this whole celiac thing is all in my head and there is nothing wrong with me or with my 3 yr old son who has been diagnosed as well. Yes, we were both diagnosed thru blood tests and he asserts that I interpreted the results the way I wanted and so did my Dr. He has made several statements in the last few months like a little bit won't hurt him and why do we have to worry about milk?(he has an autoimmune reaction to casein as well) And it has left me feeling like I just can't trust him to keep either of us safe. And as sensitive as I am he refuses to adhere to my no gluten zone for our home which I feel like is the only safe place for me in this world at times. He has become increasingly volatile and we had a tremendous argument last week where he swore he would prove I was crrazy and take my son from me. So I have spoken to a lawyer and am proceeding with the divorce paperwork. So great for me but what the heck am I going to do to support my son?!

I really appreciate your tips and ideas and those are exactly the kind of ideas I was looking for. And I welcome any more ideas that others may have as well.

And to the other who have responded, thank you for assuring me that so many others have severe reactions too. Maybe not exactly the same but that at least I know there are others who are just as sensitive.

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Ravenwoodglass We are in a bit of the same boat. My husband has decided that this whole celiac thing is all in my head and there is nothing wrong with me or with my 3 yr old son who has been diagnosed as well. Yes, we were both diagnosed thru blood tests and he asserts that I interpreted the results the way I wanted and so did my Dr. He has made several statements in the last few months like a little bit won't hurt him and why do we have to worry about milk?(he has an autoimmune reaction to casein as well) And it has left me feeling like I just can't trust him to keep either of us safe. And as sensitive as I am he refuses to adhere to my no gluten zone for our home which I feel like is the only safe place for me in this world at times. He has become increasingly volatile and we had a tremendous argument last week where he swore he would prove I was crrazy and take my son from me. So I have spoken to a lawyer and am proceeding with the divorce paperwork. So great for me but what the heck am I going to do to support my son?!

I really appreciate your tips and ideas and those are exactly the kind of ideas I was looking for. And I welcome any more ideas that others may have as well.

And to the other who have responded, thank you for assuring me that so many others have severe reactions too. Maybe not exactly the same but that at least I know there are others who are just as sensitive.

You will be okay. You have already shown you have a great deal of strength in taking the steps needed to protect yourself and your son. Let me assure you that he will not be able to take him from you. I am sure your lawyer will contact your doctors and if the lawyer reccommends that you go to child protective services to keep him from hurting your boy or you do not hesitate. If you have any fear at all that your husband may do something rash do make sure that you have a safe place to go. If you can hide a bit of 'running cash' do so and also make sure you know of any safe harbors that you can go to on a moments notice even in the middle of the night, get their numbers so you have them if needed. There are womens shelters and safe homes in many cities. Since he has already threatened to take your son make sure your lawyer knows this so protective measures can be taken while you fight for your rights and your sons. Good luck, it will not be easy but you will get through this. ((((((((((((((((((((((HUGS)))))))))))))))))))))

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Labbott...does your son have a definite diagnosis from a doctor...a doctor willing to sign on the dotted line that he has celiac disease? That can be used in court, to prove your son has to be gluten free, that his father has to provide him with the proper enviroment, if he gets any visitation.

I too got divorced just a few years before I found out I was gluten intolerant. I have been gluten free for 9 years this last July, and divorced for 11 years this month. Gluten attacked my brain, caused anxiety, agoraphobia, anticipatory anxiety, along with all my gastro symptoms. My ex often times pretended to understand, yet he didn't. Parenting was all left to me, he chose to drive semi 150 miles from home, and kept an apartment in that area. Now, when I look back, a very disfunctional lifestyle. I swore I would not divorce until my kids were all through school, yet I didn't make it, I couldn't take it any longer...my last 2 were a junior and senior in high school. I didn't have the same fear as you though, none of my kids were gluten free. At their ages though, they never stayed with their dad any ways.

Lots of us can understand where you are right now.

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Labbott,

Is there a relative on his side of the family who will listen? I've found my ex-mother-in-law who never liked me to be a great asset. When my ex has visitation it is usually in her home. She looked celiacs up (probably with the intention of proving I'm nuts) and has decided that my younger son, the one she is closest to, probably has it. So now it's all about cookbooks and how to protect the children. It is different for us because my kids are old enough and independent enough to speak for themselves. But there have been a lot of issues where I had the kids go talk to grandma if dad was being difficult. It's dirty and underhanded but it works!

Hope this helps,

RA

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Thank you all for the tips, advice and encouragement.

I tried to find a shelter when I left him last week but all the shelters in florida are communal environments and because of my airborne issue I would be too sick to function in that setting so in effect the only safe place for me is my own home from a gluten perspective. I talked to several shelters all over the state and they really just couldn't accommodate my issues. So frustrating. So I had to come back home and act like everything is ok.

I spoke with my Dr today and she is writing a letter for me and one for my son that speaks to our issues. Hopefully this letter is enough to get my husband to drop his insistence that this is not a real disease. He would then have to pay for a Dr who would dispute my Dr's findings and I don't think he wants to take it that far.

He has done a pretty good job of poisoning the water with his family by telling them all along that this is my newest so-called medical issue. (I have been asking Drs to help me figure out what was wrong with me for 10 years and they all kept saying it was in my head and it appears my husband believed them all along and not me)

Does anyone have tips or tricks for filing for disability. I think that really is an option for me considering my severe reactions but I would rather be able to make a good living if I can find a company who will work with my issues. But for right now I need to consider all my options and get things in the works since either getting approved for disability or finding a job will take a long time.

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Thank you all for the tips, advice and encouragement.

I tried to find a shelter when I left him last week but all the shelters in florida are communal environments and because of my airborne issue I would be too sick to function in that setting so in effect the only safe place for me is my own home from a gluten perspective. I talked to several shelters all over the state and they really just couldn't accommodate my issues. So frustrating. So I had to come back home and act like everything is ok.

I spoke with my Dr today and she is writing a letter for me and one for my son that speaks to our issues. Hopefully this letter is enough to get my husband to drop his insistence that this is not a real disease. He would then have to pay for a Dr who would dispute my Dr's findings and I don't think he wants to take it that far.

He has done a pretty good job of poisoning the water with his family by telling them all along that this is my newest so-called medical issue. (I have been asking Drs to help me figure out what was wrong with me for 10 years and they all kept saying it was in my head and it appears my husband believed them all along and not me)

Does anyone have tips or tricks for filing for disability. I think that really is an option for me considering my severe reactions but I would rather be able to make a good living if I can find a company who will work with my issues. But for right now I need to consider all my options and get things in the works since either getting approved for disability or finding a job will take a long time.

On the disability issue, just go into your local social security office. They will give you an appointment to come in and apply and you may be able to get it for your son also which will increase the amount you get a month. My appointment to apply took about 2 to 3 hours but they were very nice. You will want to bring in the names of all your doctors and any copies of your records that you can get. If you have been ill for a long time they may make it retroactive and give you a lump sum which would help you start over.

If your husband can't deal with the celiac issue and becomes more agressive do not be afraid to call the police. If you have to get an order of protection it will be him that has to leave your residence. Speak to your lawyer about this as he/she will be able to give you the best info on it. Also your husband will have to pay child support and possibly even spousal support whether he wants to or not. I don't know about florida law but there in NY if he didn't pay what he was supposed to the state will take away his drivers license and he can even be jailed.

Hopefully with the doctors letter or perhaps even a visit together he will start to understand and calm down a bit.

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I just wanted to mention the website, elance. It's place where persons with skills and employers can communicate and bid for work. Let's say you can type. You go into the site and look for typing jobs. When you find some you like, you can bid on them. The employer accepts the bid they like and you have a job! It's all done this way so you can work out of your home. There are many, many skills jobs of all kinds offered so take a look and get ready to freelance!

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I just wanted to mention the website, elance. It's place where persons with skills and employers can communicate and bid for work. Let's say you can type. You go into the site and look for typing jobs. When you find some you like, you can bid on them. The employer accepts the bid they like and you have a job! It's all done this way so you can work out of your home. There are many, many skills jobs of all kinds offered so take a look and get ready to freelance!

I will be checking this out today!! What a great tip!!!

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I just wanted to mention the website, elance. It's place where persons with skills and employers can communicate and bid for work. Let's say you can type. You go into the site and look for typing jobs. When you find some you like, you can bid on them. The employer accepts the bid they like and you have a job! It's all done this way so you can work out of your home. There are many, many skills jobs of all kinds offered so take a look and get ready to freelance!

Thanks for posting this. I also will be checking it out.

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I'm a little late to this discussion. I also react to inhaled gluten. I also get blurred vision from gluten exposure and chest and nose pain from inhaled gluten. It feels like my nasal passages and lungs swell.

One other thing, before I was diagnosed with celiac disease I had terrible chemical sensitivity. I had difficulty working in a setting with a lot of people because I couldn't handle perfume. That got a lot better after a year or so of gluten free. Some of your symptoms from going out might be due to that and might get better. I got a bad headache, had to lie down and just couldn't function or think clearly.

My inhaled gluten sensitivity seems as bad now after 2 years gluten as it was at the beginning My chemical sensitivity is much better.

As far as your marriage and keeping you son gluten free goes. I have the same situation. I am finally getting to a point where I am looking for part time work. I haven't found anything yet. I was considering divorce, but I had no means of support. Now that I have improved more, I can be more understanding of my husband. The diagnosis is very had to accept. It is especially hard to accept the extreme sensitivity. It took over a year for my husband to accept it. Now he brushes and flosses his teeth before kissing me if he has eaten gluten. He accepts having a gluten free household. He also had a very hard time accepting my son's diagnosis. It was done by a doctor too, but I would say that he was in denial. Who wants to believe that their loved ones will have to live with this difficult lifelong condition?

In my case, gluten had made me pretty crazy and I was somewhat blowing things out of proportion. Since I was acting crazy, no wonder he had a hard time accepting the diagnosis. As my brain healed and I got more sane, we could have more sane discussions and he became more accepting. You might want to consider giving him some more time. You got married for a reason initially, and he might come around.

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    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.