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Madagascar

Member Since 25 Nov 2012
Offline Last Active May 17 2014 12:12 PM
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#916357 Sibo, Ibs, Food Allergies - Other Ideas To Explore

Posted by Madagascar on 17 May 2014 - 12:08 PM

Thanks - I'm now done with week 10 - 2 weeks of antibiotic + 8 of the diet.  I've been able to add rice back into my diet without problems.  Today I'm eating black beans and they also seem to be fine.  Four more weeks to go until in theory, I should be able to eat like a person without food problems!

 

I know you all get what a big deal it is to be able to eat more foods than you could before.  

 

My hope is that my story will also help give someone else avenues to pursue.  I'm impressed that several of you were tested - I don't know if i went to lame doctors or what, but the response I got from doctors over and over again was to just not eat what bothered me.  The trouble was that the list kept growing as i became more and more sensitive to foods that had previously been ok.  no one even suggested further testing for me.  

My best wishes to all of you - keep looking for answers to your issues!  No, your digestive issues are absolutely NOT in your head.    


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#851556 Well, Results Of Genetic Testing In...

Posted by Madagascar on 31 January 2013 - 08:37 PM

so curious that your antibodies were lower before you went gluten-free. i don't have any idea how to explain that.

re your nasal spray - i developed angioedema from Becanase, an allergy nasal spray. evil stuff for my body. my hands, feet and tongue would swell up horribly in a "rare" side effect to it. i thought it was going to kill me. apparently i was reacting to a preservative in it. Five years of suffering with that off and on until i finally connected the dots and saw it pointed to the Becanase. Stopped using it and haven't had it since - probably 5 years now without symptoms. Glad you were able to go off of yours.
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#849221 Well, Results Of Genetic Testing In...

Posted by Madagascar on 18 January 2013 - 09:24 PM

what lab did your genetic testing? the Univ of Chicago's celiac center has a great website, including an e-book on the bottom of the home page. In one spot on their site, they recommended Prometheus Labs and the Mayo Clinic Lab. I think it was on the e-book they added a 3rd lab, but i don't remember the name. If you didn't use one of those, i would wonder about its accuracy.

Also, as someone mentioned, in Europe they test for 23 genes. In North America they test for 2 genes.

My results came back from Prometheus and it said i had the "Celiac Risk Genes Detected: DQ2.2 (HLA DQA and DQB) "and other non-risk alleles." But then they said that the DQ2 is a low-risk gene, and the report says "Celiac Disease unlikely. Does not preclude development of the disease." I don't have any doubt that i've got it - way too many symptoms and some of the antibodies. The celiac specialist that i've been seeing says that if you have the gene, you have it, that it doesn't matter where it is located.

i think you'll know better once you've seen the report. you might have gotten something like what i'm mentioning above, where their interpretation is added and the interpretation might be incorrect.
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#849219 Tooth Question

Posted by Madagascar on 18 January 2013 - 08:54 PM

I just looked this up for someone yesterday . . .

there is information out there about dental issues linked to celiac disease. Here are a few links that i found by googling "celiac+dental disease"

http://celiac.nih.go...ntalEnamel.aspx

http://celiacdisease...csymptoms_2.htm

http://www.everydayh...el-defects.aspx

http://www.jcda.ca/article/b39 (the Canadian Dental Association published this one)
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#843514 Miserable Student

Posted by Madagascar on 16 December 2012 - 08:30 PM

I take several things to help me eat. i'm newly diagnosed, but think i've had celiac disease for probably 40 years. with them, i'd say i feel pretty good and can eat most things, except those that i'm allergic to. here's the things that help me:

digestive enzymes: http://www.enzymedic...cts/Digest_Gold
lactase enzymes: http://www.digestive...nse_formula.asp
5HTP: http://www.pureformu...e-research.html

here's a post where i explained to someone else what each of those things does: http://www.celiac.co...on/page__st__15

you've got my sympathy. trying to be gluten free at a university would be very hard, and then to still not be feeling good after you've been avoiding the food would be very discouraging. i think i'm soy sensitive, besides the gluten. you might trying just leaving out one of those other foods, like avoiding all soy, or avoiding all corn, for a week and see if that helps. i've never found any doc helpful with the stomach stuff. seems like we have to figure it out ourselves.
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#843507 Nearing A Year :-)

Posted by Madagascar on 16 December 2012 - 08:08 PM

i'm just a month into it and am so glad to hear your story. thanks for the inspiration - and good luck to you!
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#843314 Worried About Starvation

Posted by Madagascar on 16 December 2012 - 12:12 AM

it's natural that you're worried, but as others have said, nothing is going to happen to you overnight. i'm in my 50's and just got the diagnosis, and i'm certain i've had this since i was a teenager.

my best advice for you is to eat the simple foods and go out and buy some digestive enzymes and lactase enzymes or probiotics to help your gut cope while it is healing. i've been taking them for years, although not knowing i had celiac disease, they allowed me to eat with whatever it was that was causing me to have so many digestive problems. i bought the Digest that is mentioned in that newbie 101 post you were given. i googled to find the manufacturer and they had an option to find a store - there were 2 stores in my town that sold them. i take one every time i eat. the newbie 101 post suggested Digest Gold, which is the strongest level of their Digestive brand - there is also Digest (medium strength) and Digest Basic (least strong.) I bought the Digestive Gold and it was too strong, upsetting my tummy - so i bought the lesser strengths and am trying them. just something for you to be aware of. with the digestive enzymes i can eat most foods, except those i'm allergic to. it's worth a try for you. somewhere online i saw there was some research going on to see if digestive enzymes would help in celiac disease - speculating that they might break down the gluten strand. the study wasn't done yet, i don't think.

i also take the Schiff's Digestive Advantage Lactose therapy - you take one or two capsules a day and they deal with the lactose you encounter that day. i can have ice cream with them. i think you can do the same thing with probiotics. i buy them at a drug store.

these things will "prop" you up while you heal. in the meantime, try the bananas, applesauce, chicken, rice type of foods - most simple and easy to digest, to help yourself out.

oh - and anxiety can be associated with malabsorption. do you have any insomnia? that can be caused by a malabsorption issue, caused by damage to your small intestine, from not absorbing enough tryptophan. tryptophan is the chemical your brain uses to make serotonin and melatonin.

my understanding is that 5 HTP is a source of tryptophan that provides you with what you need to make serotonin and melatonin. Think of it like making bread (seratonin/melatonin) - if you don't have enough flour (tryptophan) you can't make bread. without enough tryptophan, your brain can't make seratonin and melatonin. Seratonin is your happy hormone - without enough you can also feel anxious and/or depressed. melatonin lets you sleep. i also have been taking 5HTP for several years - my son is 24 and he takes it too. He had terrible anxiety attacks while in college and he also had trouble falling asleep. when he started taking the 5 HTP it resolved. you can buy it at any health food section in the vitamin area. I order it from pureformulas.com and get the one by Thorne Research Labs because my chiropractor sells that brand & recommended it to me. i thought getting from the research lab might be good in terms of purity of the supplement. buy an established brand - supplements aren't regulated. so you want to be confident in what you buy.

here's a link to a discussion about the tryptophan connection: http://glutenfreern.com/fibromyalgia/ this website is run by a nurse who has celiac disease, who left her ER job to do full-time celiac education and counseling. she speaks internationally and really knows her stuff. i know her personally, and she spoke a few weeks ago to a mental health professionals conference about the connection between celiac disease and mental health.

and i'm just a stranger on the internet - and while i am a trustworthy person, just cuz i said so, you should still do more research and make sure these things are ok for you. ;) :) they keep me going, though, and i do recommend them.

breathe. this is a marathon, not a sprint. don't get yourself worried about things that may never happen. for today, you're ok. it really helped me to think "i know what i'm going to eat for my next meal. then i will deal with the one after." hang in there! you'll get the hang of it before long.
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