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Am I Super Sensitive? I Am Not Well After A Long Time gluten-free


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#1 shayre

 
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Posted 17 March 2011 - 10:05 AM

Hi. I read some of your posts. My new doc, who is a celiac specialist says that I should be able to tolerate more foods now after a year and a half of being gluten-free. She said that maybe I am still getting glutened and don't know it? Or that maybe something else is going on with my guts? Am I cross-contaminating myself? How do I know if I'm super-sensitive? I have a 1 year old and a 5 yr old. I am constantly fixing the meals and snacks all day long with gluten. I am careful, but maybe I am not careful enough...not really knowing if I am too sensitive or not. They kiss me, and I know that they have residue probably still on their faces. And let's be honest...I cannot turn away affection from my kids and their sweet little faces. My husband kisses me, but is that affecting me? I have heard that sex makes some people react, if the partner has had beer or gluten. I didn't know if that was true, but is it? I haven't looked into personal care products like shampoo, toothpaste or mouthwash.

How do I de-gluten my kitchen, and still allow my family to eat gluten? And give my kids affection... with their glutened little hands everywhere? Do I need to worry if the dishwasher removed all of the gluten off of the dishes? Do I need to worry if washing and wiping my hands after touching gluten leaves residue on the towel? What are my concerns? Do I need to wear gloves all day? I may post this seperately too.
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#2 mushroom

 
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Posted 17 March 2011 - 12:09 PM

I would start with the glutenous kisses - that is a major source of cc. Your husband should always brush his teeth before he kisses you. Can you have your children kiss you on the cheek? And having two small children, especially a one-year old with sticky crumby fingers is pretty high risk for cc also. Perhaps you could wear a towel apron and use that for drying your hands - yes, you should be washing them whenever you have touched gluten and always before preparing/eating gluten free food because you can get it off things like door handles and knobs. . It is very difficult living in a mixed household. Are you keeping separate jars of peanut butter, spreads, anything a knife goes into? Also, your gluten free food should be separate and on a high shelf so that gluten does not fall down on it. Do you still keep gluten flour in the house? This can be a major source of cc as it flies in the air and stays suspended and then lands on counters and whatever is on them. Also, yes to gluten free personal care products, especially anything that goes in the mouth or on the lips, but also lotions, shampoo, etc. You don't have to be a super sensitive to need to eliminate these.

Give all these things your attention before worrying about problems with sperm. I have heard some could be sensitive to it but I really don't know.

Good luck with your deglutenization.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 hnybny91

 
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Posted 17 March 2011 - 02:13 PM

I would almost bet you are being cross contaminated. My son thought I was nuts when I told him I will not let my birds eat anything with gluten because they are always crawling on me and birds love to stick their beaks in your mouth.
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#4 tarnalberry

 
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Posted 17 March 2011 - 02:17 PM

I would put money on being contaminated - a lot. I have a 10 month old, and she will eat what I eat in the house until she is old enough to be as responsible as my husband is about his gluten (and he is quite responsible).
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
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#5 T.H.

 
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Posted 17 March 2011 - 04:46 PM

How do I de-gluten my kitchen, and still allow my family to eat gluten?


I honestly don't know if you can, not with such small little ones, unless you are confining the gluten to a specific area and they have to wash their hands as soon as they eat. :(

That said - have your little ones been tested for Celiac Disease as well? If your doc hasn't mentioned it yet, there's a good chance they either do have it, or will have, even if they have no symptoms. Many doctors are recommending getting family members tested every few years, as the disease can trigger at any time.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 shayre

 
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Posted 17 March 2011 - 05:10 PM

Ok, I bet that half of the time I am the one kissing their sweet little chubby cheeks...and I don't hose them down after each meal and snack, so I am sure that there is residue from head to toe on them at all times. I ask my 5 yr old to NOT kiss me WHILE he is eating gluten, but it's free game after. How is it possibly feasible to wash them down after every time that they eat? Ugh, so hard. Yeah, I already know that I'd be fighting a losing battle with getting gluten out of the house. Be glad you are starting your baby before she knows better! There are always crumbs all over the counter, the floor and the table. I feel that sponging them up will not get rid of the residue that I cannot see. My husband is a smart man, but I had to laugh when he handled my food and said...I just used antibacterial gel. Ha...I said, honey...it's not a germ that you can kill with gel. It's a food molecule. Heehee...always makes me laugh. I do share the same appliances and dishes, but I always wonder what the dishwasher leaves behind that I can't see.

I do have my own jars of peanut butter and jelly. We share gluten-free chips. Other than that, no one eats what I eat...because I can't eat much. However, my baby does like to eat what I am eating...when I am eating it...sometimes after he's eaten gluten. I admit to giving in and sharing my utensil with him, and even another utensil would be dipped back into my cereal bowl or rice. I don't cook much or bake, but I did make muffins from a box mix for them last weekend...so maybe the mix was in the air....huh, maybe I breathed it in...and that caused the downward spiral that I've been on this week.
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#7 chili

 
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Posted 17 March 2011 - 05:20 PM

wow that sounds like my household. I keep thinking that I am getting glutened as well., I have 3 small kids under the age of 5 and I too am dealing with gluten on a day to day basis. They come give me kisses and I make them wipe their faces with wipes..Is that not good enough. I find it very hard to completety rid my kitchen of gluten. I tried giving them gluten-free bread but my kids wont eat it..I only make gluten-free pasta, no regular pasta anymore as I do not want any cross contamination. This is very stressful!~
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#8 GlutenFreeManna

 
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Posted 17 March 2011 - 05:31 PM

It sounds like you really need to take your kitchen gluten free in order to get better. Your family can eat gluten when they are out of the house at school/daycare/work or when you go out to eat at restuarants with gluten free menus. You need to convince them of the importance this. Let your husband know when you are sick. Don't do anything extra as long as you are having glutening symptoms. In fact, make him do things you normaly do because you are not well. A lot of times we as women we ignore health problems and try to be supermom and superwife and just power through. This is a serious enoguh thing that your need to make some changes in your family life. Once it is clear that you cannot continue to go on with this constant cc that is happening, your family should be behind you to make some changes. You said you don't cook, well it's time to learn! There are SO MANY naturally gluten free meals that are easy to make and your family will not even notice that they are eating gltuen free. Get a crock pot if you don't have one already. This blog has a ton of recipes and all of them gluten free. There is LOTS you can eat!
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#9 mushroom

 
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Posted 17 March 2011 - 05:35 PM

I hope you will forgive my saying so, but your house sounds like a gluten contamination zone. Forget the dishwasher - that is probably the safest zone in your kitchen :lol: But as for the crumbs all over the counter, the shared eating utensils (and toaster and colander I presume) as well as probably baking pans and wooden and plastic utensils and cutting boards and... and... AND there's no way that you are going to keep yourself gluten free under these circumstances, before we even get to the kisses and other stuff. :o You are going to have to make up your mind whether you are truly going to do the gluten free diet or not, because if your doctor says you are still getting gluten I can see why. There really can be no half measures when it comes to gluten, you can't do gluten "lite" or mostly gluten free or close to gluten free. It must be gluten FREE. Now I don't know how you are going to manage this. You are going to have to work it out with your husband and your children, set new rules and enforce them. :ph34r: This is the only way to save your health.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#10 T.H.

 
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Posted 17 March 2011 - 07:31 PM

We share gluten-free chips. However, my baby does like to eat what I am eating...when I am eating it...sometimes after he's eaten gluten. I admit to giving in and sharing my utensil with him, and even another utensil would be dipped back into my cereal bowl or rice.


Oh that would definitely do it. A good friend has a toddler who is celiac, and she's only been doing the diet for a few months now. They were very careful because he gets really sick off gluten. He went out with us to a mall. She ate gluten, he didn't (had gluten free snacks my family brought from our gluten-free kitchen, so we know they were okay). The only thing that happened was he wanted a few sips of her soda so they shared the straw - that was enough to have him sick the next two days.

A couple weeks later, he got gluten free finger food at the dinner table. She put her gluten finger foods on her plate, wiped her hand on her napkin and then put his finger foods on his plate by hand. He's in a highchair that they keep totally gluten free, so they know it's pretty safe. But just her touching his food that way was enough to get him sick again.

It sounds like you're getting all sorts of gluten cc in the house, hon. So sorry.

I really do sympathize with the impossibility, honestly. We tried to keep gluten and gluten free in the house together, and even with older kids, it was SO hard to remember when to wash hands and what to touch and not touch that we ended up doing everything gluten free. Then it turned out me and the kids all had to be gluten-free anyway, so it turned out all right. :-)



It really, really doesn't take much.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#11 ciavyn

 
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Posted 18 March 2011 - 03:21 AM

I've read several of your posts, and here's what got me to start doing what is good for ME. Think of gluten like poison to your system. That is what it is. Rat poison, and you are ingesting it every time you turn around. I for one, think that getting and giving kisses to your children is precious affection, not to be avoided or sanctioned. So this is an easy fix: Mom gets sick on these foods. Therefore, they do not come into the house. These are POISON to mom, and we can't risk her being sick. This stuff could KILL mom. It is that serious -- and I'm not being dramatic. This disease can kill you. Yet it's very easy to manage. Your 1 year old doesn't know the difference, so just let him/her eat what you eat. Your five year old will understand it if you are very clear about why, and are open to answering questions. When they eat out, or at a friend's or relatives house, they are a no-kissing zone until fully washed up! And you can play games with it and make it fun. I had two-stepchildren who lived with me when I went gluten free, and they knew why we ate differently, and why things tasted a little different. But it was always yummy, I answered any questions they might have, and they knew, without a doubt, that I was dead-dog serious about my health. THAT is how you need to be too. If you had cancer, you wouldn't stop having treatments because it might inconvenience your family. This is the same thing. And it's just food! Get out some new recipes and start trying things. But set a hard line for your health, and get your spouse on board. Have him go to the doctor with you if need be. But YOU have to be serious about your health, and you haven't been, which has set the mood for the entire house. So let your 5 year old help -- they are great in the kitchen! -- and play with new ideas. Convert your favorite recipes. Discover new ways to make chicken fingers. Make it a game. If it doesn't turn out, have a gluten free frozen pizza as a consolation prize.

And I'm not in any way callous to how hard this -- I know it's hard, and when you are sick all the time, it makes it even worse. But you have got to take care of YOU first, or else your children will not have the mom they need, and your husband won't have the partner he married. Please take care of yourself, and have FUN trying new things and getting everyone in on it. You can do this -- and you can feel better, too.
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Peanuts added back: June 2010 (in small quantities)

#12 shayre

 
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Posted 18 March 2011 - 11:49 AM

Ok. You guys made me cry:( I know that this is what I need to hear though. I've pondered for a while about the cc factor, but I guess that I just thought that maybe I wasn't so sensitive to the gluten. I have probably been fooling myself. That is why I've come on here to ask questions. I have also been too scared to ask my husband and family to make necessary changes. They are loving and understanding, but I don't think that my husband knows how serious it is...and maybe you're right...it's because I haven't known that I NEED TO BE that serious. It is asking my family for a HUGE lifestyle change that they will not be happy with. And yes, I guess that I will have to start learning to cook. Maybe if I start finally feeling good, then I'll actually feel like cooking. I think that my husband needs to hear it from you all though...to really believe and understand what needs to be done. I had already decided that I wanted him to start reading with me on this site. If anyone has suggestions about what else my hubby can read to help us prepare our house and family for changes...then I am all ears? Ok, this is going to make some of you shreek. I have begun to go through my house and look at it from a contamination-risk point of view. I just opened my siverware drawer, and noticed that there were itty bitty crumbs all in it...with the silverware that I eat from touching them. How have I been so blind, and how do crumbs manage to get in the silverware holder? I guess that I am just sooo busy with my kids and not feeling well, that I've been missing the obvious. I am so careful about what I put into my mouth, but I don't see how I have completely been oblivious to all else. It's almost emabarrassing!
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#13 mushroom

 
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Posted 18 March 2011 - 12:29 PM

No, I am not shrieking :D It is quite easy to travel below the radar, actually. There is an old saying I am sure you are familiar with, "There are none so blind as those who will not see." You were hoping that you could do it all without incoveniencing anyone too much, which is an admirable thought, but unfortunately not possible with celiac. It is extremely inconvenient at times, especially at first, but it gets easier and easier as you go along. There is the "Gluten Free for Dummies" book which might be a good place for you to start. It will remind you of all the things you need to do (and keep doing) to become and remain gluten free. Good for you for making the start. Crumbs do get everywhere - that is why we say that a mixed kitchen is very hard unless everyone cooperates to the utmost. As has been noted here, it sounds like your children could benefit from gluten free too, and I am sure your husband will cooperate once he understands how important it is to your health. He can eat as much gluten as he likes outside the house.

Good luck with the deglutenization :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#14 GlutenFreeManna

 
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Posted 18 March 2011 - 12:41 PM

Ok. You guys made me cry:( I know that this is what I need to hear though. I've pondered for a while about the cc factor, but I guess that I just thought that maybe I wasn't so sensitive to the gluten. I have probably been fooling myself. That is why I've come on here to ask questions. I have also been too scared to ask my husband and family to make necessary changes. They are loving and understanding, but I don't think that my husband knows how serious it is...and maybe you're right...it's because I haven't known that I NEED TO BE that serious. It is asking my family for a HUGE lifestyle change that they will not be happy with. And yes, I guess that I will have to start learning to cook. Maybe if I start finally feeling good, then I'll actually feel like cooking. I think that my husband needs to hear it from you all though...to really believe and understand what needs to be done. I had already decided that I wanted him to start reading with me on this site. If anyone has suggestions about what else my hubby can read to help us prepare our house and family for changes...then I am all ears? Ok, this is going to make some of you shreek. I have begun to go through my house and look at it from a contamination-risk point of view. I just opened my siverware drawer, and noticed that there were itty bitty crumbs all in it...with the silverware that I eat from touching them. How have I been so blind, and how do crumbs manage to get in the silverware holder? I guess that I am just sooo busy with my kids and not feeling well, that I've been missing the obvious. I am so careful about what I put into my mouth, but I don't see how I have completely been oblivious to all else. It's almost emabarrassing!



You'll get through this! I understand how hard it is to ask for help and ask your family to change for you but it must be done for your health. Otherwise you will only get worse, not better. I'm going to share with you (and you husband) some of my personal story. Before I figured out my problem was gluten I was bedbound with pain. The doctor had revoked my driving privledges because I was having unexplained seizures and I couldn't eat anything without throwing up or getting nausea. My husband had to work two jobs for a while because I couldn't work and we had lots of medical bills to pay from all the tests that turned up nothing. He also had to worry about me and take care of me--making sure I ate, holding me up in the shower on the days I was too weak to stand. I was 100% dependent on him. Some people with this disease that continue to eat gluten don't ever get that bad but they develop more serious health problems later in life as the result of the continued attack on their body. If you keep getting gluten you increase your risks of cancer and other autoimmune diseases like RA, Lupus, Hashimotos and other thyroid diseases, etc. Does you husband want to eat gluten in your house SO badly that he will risk seeing you undergo chemo in the future? I'm guessing he doesn't. I'm guessing he would rather help you to live a long and healthy life--which is totally possible with a gluten free diet! The gluten free diet is not a death sentence. Your husband and your kids will adapt to your home being gluten free. They can eat all the gltuen they want outside the house they just have to remember to wash up when they are done before kissing you or touching you.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#15 shayre

 
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Posted 18 March 2011 - 05:39 PM

GFM, I was already just diagnosed with RA, and am supposed to start medication. Lupus is borderline. Myositis is possible. Hashimoto's was diagnosed 5 yrs ago. Did you already know that about me? How did you guess that right on the button?

Thank you all for your kind words and support. My hubby comes back in town tonight, so I'll spend the weekend having him read up on our discussions. I am still happy to hear further advice if anyone has anything to offer...
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