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Do I Need To Be Diagnosed?


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24 replies to this topic

#16 Cargo

 
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Posted 08 May 2013 - 08:45 PM

Decided, just for the hell of it, to add on the thyroid tests to my request.  My symptoms all fall under Hashimoto symptoms as well, and thyroid issues run in my family.  I just want to feel better!  Being this tired and having all these issues can't be just...nothing.  I mean, I keep telling myself that maybe if I just lose weight, everything will be good again...but how can I work out when I'm so freaking exhausted? 

 

My doc will probably give me a lecture....ugh...stupid VA.  If I didn't have to get my care there, things would be so much easier.  My ability to advocate for myself is so limited. 


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#17 GottaSki

 
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Posted 08 May 2013 - 09:11 PM

Ummm.....the difficulty you are facing is well know by many of us...HMO, PPO, VA, NHS, hmmm can't remember if Canada has abbreviations....the key is to understand the issues you want tested -- which it sounds like you do.  

 

Hang in there :) ...keep pushing :ph34r:  ...you will find answers  :blink: ...and I am sorry it is frustrating :unsure:  -- I completely understand the frustration  :huh:


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#18 Cargo

 
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Posted 15 May 2013 - 10:08 PM

Doc ordered my celiac blood tests today!  I think I'm going to do a massive gluten challenge for two weeks before I get the tests done.  I found this article that said two weeks is enough. 

 

http://www.celiaccen...-modified-8149/

 

 

Instead of eating bread, I plan on buying a bag of gluten for baking and just mixing it will water and chugging it.  I figure two or three tablespoons a day will do it, if I am celiac!


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#19 nvsmom

 
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Posted 16 May 2013 - 06:44 AM

Good luck!  Enjoy an Oreo or beer for me.  :D

 

You might want to gluten yourself in the evenings so your days aren't negatively affected by feelings of poor health.


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#20 cavernio

 
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Posted 16 May 2013 - 07:35 AM

Are you crazy??  Enjoy the forbidden foods while you can!

Speaking bags of gluten, the week before my dx I had scoured the store for one because I wanted to try making some vegan dishes with it. What a waste of my money!

 

Also, my personal experience is that I hardly felt better being gluten-free after 2 weeks. It's reaching a year now and I still suffer. If I did not get tested for celiac disease, and it didn't turn up positive, I would likely have ditched my diet ages ago. But I also wasn't as aware as you are of celiac disease, or of non-celiac gluten intolerance.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#21 GFinDC

 
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Posted 16 May 2013 - 08:28 AM

Doc ordered my celiac blood tests today!  I think I'm going to do a massive gluten challenge for two weeks before I get the tests done.  I found this article that said two weeks is enough. 

 

http://www.celiaccen...-modified-8149/

 

 

Instead of eating bread, I plan on buying a bag of gluten for baking and just mixing it will water and chugging it.  I figure two or three tablespoons a day will do it, if I am celiac!

 

Hi Cargo,

 

Two weeks may be enough for 75 percent of celiacs, but if you aren't part of that 75 percent, not so helpful.  Just remember if you get a negative result if t could just mean you are part of the other 25 percent who need longer gluten challenges.  I agree it's pretty good chance of a positive, but not so reliable as a negative.  Just something to be aware of.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#22 Cargo

 
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Posted 16 May 2013 - 08:30 AM

I haven't gone gluten free at all yet, but I realized that I've only  been eating a fairly small amount of bread recently and don't want to take any chances on a negative blood test. lol  I'm sure there's gluten in other things I've been eating, but I'm paranoid that it's not enough for the tests.  I know it's not logical. lol  I just want to over do it so I can be sure.


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#23 WendyRB

 
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Posted 19 May 2013 - 09:23 PM

My doctor, who is a specialist in Celiacs Disease, said to eat at least two peices of bread every day for six weeks before being tested. You might want to watch chugging a whole bunch of gluten- if you are gluten sensitive or have Celiacs it might make you feel really horrible. And I agree with everyone else who says a two week challenge is basically worthless- I was put on a very strict elimination diet and didn't get to add gluten in for at least three months to make sure it was completely out of my system. When i went off of gluten I had a massive headache for five days. Since I went on the elimination diet for digestive issues, it took me a while to realize that my headaches had stopped when I went off of gluten. On this particular diet, when you add in a new food you eat it for three days, then do something else the next three days- they call it a Rotation Diet. It took me a while to realize that during my three days on gluten, I would get really irritable, yell at the kids, fight with my husband, and then get a headache.

Sometimes the symptoms are kind of subtle and you have to pay attention to get the cause and effect.


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#24 Cargo

 
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Posted 24 May 2013 - 04:45 PM

I got my blood test done Monday...I didn't stuff myself with gluten before hand.  I wasn't eating a ton of it, but I certainly hadn't intentionally removed it from my diet so I'm sure if there's something to show, it'll show.

 

I also requested to be tested for Hashimotos so we'll see how that goes.

 

I have no idea how long it will take to get the results.  I'm nervous!


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#25 GottaSki

 
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Posted 24 May 2013 - 07:53 PM

No need to stuff yourself with gluten....glad you got them done.  Most blood tests take less than 72 hours....yet results can take a week or so to hit your file.  Make sure you request written or electronic copies from your primary.

 

Hang in there :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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