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Any Ideas?
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Hey guys it has been a while since i have been on here, some days are ok and some are not ok. I made a trip to my grandkids they live in MO. Been here about 2 weeks and have been doing better only 2 real bad days. The babies are 4 and 1, gluten has bound to be here but they kept a hyla water filter vacuum going quite alot. When I visited my father in Arizona i did pretty well also and was gone 10 days, ok here is the question, At home in my own home which is a new trailerhouse, I get sick almost everyday, and never feel like doing a thing, not even visiting my friends,afraid i will become ill at there house, and not be able to get home. I still am not driving, in too much pain and misery. I am wondering if there could be something in my home that is making me ill I do have lupus of the skin and DH and celiac of course but my home is clean and gluten free. which is not the case when i visit family, my husband thinks i am either crazy or just major depression. I have been gluten-free for about 6 months, Please help and give me some advise. :o

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Hello Barara, I think that celiacs is a constant journey. Febrauary 28th will be my one year anniversary that I have been gluten-free. There have been good days, and bad days. The bad days are depressing, fustrating and scary. On those days when you're feeling crummy, you just want to wrap yourself in your home, and not see or hear anyone.

I also learned that most celiacs have other allergies. Maybe because of the damage that was done to our intestines. I finally went to see an allergist/nutrtionist. My list of allergies goes on and on. Hopefully one day when I am healed, I will be able to enjoy those foods again.(except gluten, of course) I couldn"t figure out why one day I would be ok then the next I felt like I did on day 1. I wanted to pull my hair out( whats left of it :unsure: ) Maybe a ND would be able to help you too.

Hang in there, you are not alone :)

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While I don't have specific answers for you, I do have a few ideas for things to look into.

Here are some items I'd check into if it were me (all of which are documented to bother people):

Gas leaks

Compact fluorescent lighting

Fumes from carpeting, upholstery or paint

Mold (including from potted house plants)

Tobacco smoke or other pollutants from neighboring homes

Radon or other naturally occurring gases

Pollen, dust, or dust mites

Ultrasonic pets repellers (can be from neighboring homes)

HTH

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While I don't have specific answers for you, I do have a few ideas for things to look into.

Here are some items I'd check into if it were me (all of which are documented to bother people):

Gas leaks

Compact fluorescent lighting

Fumes from carpeting, upholstery or paint

Mold (including from potted house plants)

Tobacco smoke or other pollutants from neighboring homes

Radon or other naturally occurring gases

Pollen, dust, or dust mites

Ultrasonic pets repellers (can be from neighboring homes)

HTH

thank you one and all you guys are always so helpful.

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Hey guys it has been a while since i have been on here, some days are ok and some are not ok. I made a trip to my grandkids they live in MO. Been here about 2 weeks and have been doing better only 2 real bad days. The babies are 4 and 1, gluten has bound to be here but they kept a hyla water filter vacuum going quite alot. When I visited my father in Arizona i did pretty well also and was gone 10 days, ok here is the question, At home in my own home which is a new trailerhouse, I get sick almost everyday, and never feel like doing a thing, not even visiting my friends,afraid i will become ill at there house, and not be able to get home. I still am not driving, in too much pain and misery. I am wondering if there could be something in my home that is making me ill I do have lupus of the skin and DH and celiac of course but my home is clean and gluten free. which is not the case when i visit family, my husband thinks i am either crazy or just major depression. I have been gluten-free for about 6 months, Please help and give me some advise. :o

have you spoken to a doctor about depression? I know it sounds like a scary word, but, depression cuases physical pain and is usually linked with things like fibro...you should go to your dr and explain your symptoms instead of hiding. Also, when have you last had blood work and things tested about your lupus? because, if you are eating gluten-free you should not really be having gluten problems. go to your doctor! also, maybe journal your symptoms for a week, what happens when you eat, how you phsyically feel, how you mentally feel. You don't have to suffer by yourself! And, sometimes, as much as we all love men, they just don't get it!

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Since you're living in a new home, I'd suspect something like chemicals - the chemicals in the carpet, paint, etc. A slight possibility of mold. Or maybe something weird with the electrical wiring. I've read some stuff about electrical emissions on the human body. Dimmer switches emit a lot, if you have electronics like you clock too close to your head when you're sleeping it might cause a problem.

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Yeah, I agree with the others. If you are doing better outside of your home, then you should get your home tested. I know where I live, radon is a huge issue, especially in new communities. A friend of mine put in a bid on a townhouse that is no more than 2 or 3 years old, and the radon levels were unreal. Apparently, this is a common problem throughout the neighborhood, which has thousands of houses in it.

Not to say that radon specifically is your problem, but many people in that community live with that every day and have no idea. So, I would most definitely check into the list the other poster gave. Your home is supposed to be the one place you know you can feel good in. I hope you can figure it out soon!

On the other hand, I am glad you are feeling better so you can enjoy your time with your family! :lol:

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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