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Omg...i Might Be On To Something


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33362 replies to this topic

#33331 confused

 
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    Just cause i cant have gluten doesnt mean im dying

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Posted 02 December 2008 - 04:53 PM

Paula,

I dont blame you and to be honest this is exactly what has been on my mind the past couple days.

I too wont be posting anything on this board with regards to my health issues, treatments, doctor appt.'s or anything of that nature. I feel its not in my best interest to do this anymore.

Of course if anyone is interested they can always email me....and I will be happy to share any new developments. :)

No more sharing my personal experiences on the board though. ;)


I am glad I am not alone in this thinking.

Okay, I guess I won't either. :angry: :)

Lisa,
You can still post if ya want lol.


paula


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gluten, casein and soy free
on low carb/low sugar diet

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#33332 Rachel--24

 
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Posted 02 December 2008 - 06:26 PM

Did I miss something? :huh:


Lisa, trust me that you didnt miss anything worth knowing about. ;)

Besides....you have my number.....we can still talk about whatever..... and whenever. :)
When I get a little better I'm still gonna come to Fresno for pizza! :P :D

I'm not leaving....just not posting the health related stuff that is personal.
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Rachel

#33333 mhaber

 
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Posted 02 December 2008 - 07:12 PM

I don't have much time to reply but I am going through the same thing. I was going to my allergist often because I was noticing when I ate foods I had reactions. She made me go on some strict diets and I have problems with wheat/gluten, dairy and corn. It was a long hide time figuring everything out. best of wishes and please let me know what foods you find that can be eaten!
Best wishes and many blessings to you!
Sincerely,
Michelle


Well I've been struggling for quite some time now. It doesnt matter what I eliminate I'm still sick. Its like it HAS to be something that is constantly in my system because I havent had a single symtom-free day for over 3 years now. Even when I limit myself to 2 safe foods I'm still having symptoms so basically nothing has worked. All meds or supplements have worsened my symptoms. All gluten-free packaged foods bother me. I toatlly eliminated casein and still have problems. It was only one supplement I was taking that had milk in it so I stopped taking it...felt better...started eating more foods and totally symptomatic again.

I was eating Enjoy Life chocolate chips with no problems..also did some baking...no problems. I had one cake mix with all safe ingredients and reacted. The mix only had like 4 ingredients and I tolerate all of them...the only questionable ingredient is Xanthan gum. Its also in every gluten-free product I've reacted to and also rice milks and almond milks and a ton of other stuff I cant have. I found out its from CORN. I never thought about corn...but its in everything. Even when I'm only eating meat and veggies (no corn) I'm still having corn everyday in my thyroid meds and any supplements or vitamins I've ever taken most likely have corn.

Pre gluten-free I never ate much candy or sweets....my favorite snacks were popcorn and Tostitos. These were also the first foods I started avoiding long before I ever heard of gluten because the next day I always had a swollen face and a migraine. I had thought it was from the salt or something. I thought everything was thyroid related since I had Graves so I started avoiding all salt.

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy. Today at work (I work in a grocery store) I started reading all the labels of the foods I used to eat before I got sick. They ALL have corn. Its in bread, soups, microwave dinners, yogurts, cheese (why is corn in cheese?). Anyways, I've never been corn-free because of my thyroid meds and lots of other things I've tried over the last year. I had posted about getting "glutened" by all the gluten-free cereals. Well they are all corn based....DUH. I dont know why I never thought of this since everything I've had problems with have some form of corn in them.

I really need to eliminate the corn to see if I get better but dont know how I can do this when I need to take thyroid pills everyday. What do people do in a situation like this? What if I'm intolerant to corn all this time and its in the medication I need to take?

The other big question is am I really intolerant to gluten and dairy? If I get better off corn I dont know what to think about that. All the foods that have gluten also have corn so I would likely have to stay off gluten anyways....hmmm...does pizza have corn in it? :huh:
Also yogurt and ice cream really mess me up but they also have corn. There ARE some brands and flavors that dont have corn so I would LOVE to not have a problem with dairy!!
I would rather be intolerant to corn and gluten both than have to give up dairy for good.

Does anyone have a corn intolerance? Could I have just developed this out of nowhere and NOT have gluten intolerance...or is it more likely that gluten caused this to happen in the first place? I'm actually hoping I'm corn intolerant cuz as hard as it seems I've been struggling a long time now. The symptoms I've gotten from the stuff I've eaten with xanthan gum are severe....also I had powdered sugar yesterday and had another severe reaction. I have no reaction to cane sugar but when I looked at the ingred. of the powdered stuff its cane suger AND corn starch! Right now I feel exactly like I felt before I ever went gluten-free...everything hurts. :( This would explain why I dont do well with anything processed or with any supplements or vitamins or medications.

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??


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#33334 nora_n

 
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Posted 03 December 2008 - 02:18 AM

Here is one of the last articles on emofree, link from the newsletter one gets when downloading the free manual: http://www.emofree.c...pain-relief.htm
http://www.emofree.c...cles.aspx?id=19
here another story:
http://www.emofree.c...-room-molly.htm
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#33335 dlp252

 
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Posted 03 December 2008 - 08:14 AM

Yeah, I decided a while ago to not post too many details about what goes on with me. Which is one reason why I haven't posted the name of the procedure they did for fixing the floppy intestines, lol. It's an unusal word and if someone (like me) does a search on it this thread will come up.

On a different note. I was really sick again yesterday. My surgeon is referring me back to my gastroenterologist for more testing and to check the ducts. Not sure what is involved with that, but I'm thinking it's probably an endoscopy. I see him Friday.
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#33336 byebyegluten

 
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Posted 03 December 2008 - 08:48 AM

My daughter is intolerant to corn. I am intolerant to all grains, including corn (you may have the same problem, maybe it's lectins? I react to all of them badly). I would NEVER have thought that xanthan gum is made from corn! But you have gotten excellent advice already, I hope you find a compounding pharmacy to make your thyroid meds without corn. It would be amazing if you would have finally figured it out!

I'll be praying for you!


how did you find out that you were intolerant to grains and corn? just by eliminating them? thanks!
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#33337 AndreaB

 
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Posted 03 December 2008 - 10:09 AM

how did you find out that you were intolerant to grains and corn? just by eliminating them? thanks!

Ursula doesn't post on the thread anymore.

I believe groups of foods were eliminated though once other common foods were found to be problematic.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#33338 Philibuster82

 
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Posted 03 December 2008 - 11:56 AM

I really want to do a cleanse (having some issues like constipation, bloating, discomfort, etc.) but I'm a little scared because some people seem to say that colon cleansing is a fad, there's no medical evidence, blah blah...

Is that stuff true?

Has anyone heard of this one: Colon Cleanse Product by DrFloras? That's the one I'm thinking of doing. The pictures are SO gross... but I don't want that stuff in me.

Any one have a clue as to whether this is safe or not?
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#33339 dlp252

 
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Posted 03 December 2008 - 01:37 PM

Sorry Philibuster, I haven't any experience with that. I think in general a colon cleanse once in a while is probably a good thing, especially for those of us with bowel problems, but I have no data on that.
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#33340 mftnchn

 
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Posted 03 December 2008 - 03:49 PM

Lisa, I agree. I definitely missed something. :huh:

Donna, oh no!!! You've really had a long haul with this.

Colon cleanse: I think this is useful. The only thing is I think one has to really think about their own health and the method they use to make sure you don't overwhelm your system. The other thing is, if you have a lot of parasites, giving thought to what makes you a good host (i.e. what keeps your resistence to them down?)
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#33341 ShadowSwallow

 
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Posted 03 December 2008 - 06:15 PM

Yeah... I'm also missing something. :huh: If someone wouldn't mind PMing me, I'd like to know what went down. :)


(Huh, I suppose I haven't posted in a while. But I'm still here! I always read along. :D)


Sara
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#33342 mftnchn

 
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Posted 04 December 2008 - 04:08 AM

Welcome Michelle, Philibuster and bye bye gluten.

Intolerance to grains and corn can be discovered many ways. There are various ways to test. The best and cheapest is to do an elimination diet where you go off the food totally for a week to 10 days (no tiny amounts should slip in) then challenge it by eating the food. Monitor your symptoms carefully. It is best to check plain organic foods if you can, then if those are okay test the non organic versions, etc.
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#33343 aprilh

 
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Posted 04 December 2008 - 06:27 AM

Hi all....what's going on with not posting?? I rely on people's experiences and have learned so much from them :)

I am sure there are judgemental people on this forum...I have seen it go on. But who cares about them!!

I know of a good forum that we could all go to :)
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#33344 christine 25

 
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Posted 04 December 2008 - 03:40 PM

Christine, if you are supplementing T3, what I understand is that the TSH level goes down very low like that and is no longer valid as a single test (although many docs don't seem to know that which is weird).


Im not on thyroid meds. so its just weird to have a TSH go so low for me from 1.2 to 0.4. I think--hope--everything is okay and it will swing back in time.

Im seeing an intergrative MD now, so she is getting some new labs, we shall see. Im still alive! That is good at least!

:P

The other night I knocked over a lamp with a flourecent light blub in it... what an ordeal. I had to clean up all the fragments with sticky tape, and then water with a damp cloth, I guess there is a small amount of mercury in the bulbs. So that was fun at 3am. :lol: I think I survived it tho. I aired out the room for 30 min tho, it was 30" outside, lol.
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(2000) dx pcos, mild elevated free testosterone
(May,2004) exposure to endocrine disrupting chemicals
(Sep, 2004) elevated thyroid antibodies
(Feb, 2005) dx hashimotos, euthyroid
(Jan, 2006) dx vasomotor rhinitis
mucus, swelling, and head pressure since consistent since 2004
(July 2006-Jan 2007) 3 root canals, porcelain crowns, 4 white fillings
(Fed 2007) Irregular periods
Headaches worsen pain hard to function 8 or 9 on a scale of 1-10
(May 2007) painful nodule.
(July 2007) start YAZ
September 2007, pain free, since 3 years.
(Sep 2008) off Yaz
(Dec 08) pineal cyst 4mm dx
on topomax for migraines 50mg

#33345 christine 25

 
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Posted 04 December 2008 - 04:15 PM

Hi all....what's going on with not posting?? I rely on people's experiences and have learned so much from them :)

I am sure there are judgemental people on this forum...I have seen it go on. But who cares about them!!

I know of a good forum that we could all go to :)



I don't think anything went down. Maybe there are just fewer, problems to report that are clinical in nature for now. The thread will bounce back when there is stuff going on and people feel like sharing again.
I think that is what some are saying is that they don't feel comfortable putting out
ambigious personal information on the internet. I'm down with whatever. :D
I also have been reading the thread for so long now, it has to be the guiness world record of threads!

luv you guys~
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(2000) dx pcos, mild elevated free testosterone
(May,2004) exposure to endocrine disrupting chemicals
(Sep, 2004) elevated thyroid antibodies
(Feb, 2005) dx hashimotos, euthyroid
(Jan, 2006) dx vasomotor rhinitis
mucus, swelling, and head pressure since consistent since 2004
(July 2006-Jan 2007) 3 root canals, porcelain crowns, 4 white fillings
(Fed 2007) Irregular periods
Headaches worsen pain hard to function 8 or 9 on a scale of 1-10
(May 2007) painful nodule.
(July 2007) start YAZ
September 2007, pain free, since 3 years.
(Sep 2008) off Yaz
(Dec 08) pineal cyst 4mm dx
on topomax for migraines 50mg




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