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Am I The Only One Who Has Doubts?

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Posted 03 May 2013 - 07:53 AM

Recently my sister-in-law (who is a physical therapist) mentioned that I might try going gluten free to see if it helped me with my joint pain/inflammation.  I was completely gluten free for 12 days and wasn't really sure if it helped with the joint pain but what I did notice was that I had more energy, no headaches, no nausea, no stomach aches and I stopped taking my prescription acid reflux pill for the last half of that time and didn't experience any symptoms.   


History:    My brother probably has celiac disease.  He has been gluten free for over 5 years.  If he ingests the tiniest amount of gluten by accident he gets severe joint pain, heart burn and is extremely sick.  He's mentioned to me many times that I should try going gluten free because of my GERD and migraine headaches.....but I never did.

        Almost every morning I wake up with stomach cramps or nausea.  I call this "my digestive system waking up".  I've always figured it was from an empty stomach or too much stomach acid.  I thought everyone felt this way.  I do experience extreme fatigue some days but I have always attributed that to "being a mom".  My GERD is because I'm overweight and I get migraines because they run in my family.  I have a reason for every single one of my celiac symptoms.....and it is possible that those are the reasons for them.


     When I was off gluten I was pretty sure I had a gluten problem, when I first went back on gluten so I could be accurately tested I was feeling yucky within 24 with heartburn and headache and actually had liquid diarrhea in my pants.  At that point I was sure I had a gluten problem.  Now I'm on day 6 of eating gluten and the symptoms are not as severe (I am taking my acid reflux prescription again) so now I'm starting to doubt there was a problem.  Maybe I'm just imagining that I don't feel good.  I just want to do the test and get it over with.  Anyone else ever doubt how lousy they are actually feeling?


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Posted 03 May 2013 - 08:16 AM

I think we could fill a book with doubts.

And a second with things we thought were "normal".

Do what you need to do to figure out your health issues. Sounds like you're on the right track.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
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DH (and therefore Celiac) dx from ND
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!



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Posted 03 May 2013 - 09:28 AM

I keep trying to make my physicians tell me this really isn't happening to me.  Is that expressing enough doubt?  But 3 of them affirm that it is so.  I guess I need to stop doubting.


Maybe your body is too overwhelmed to keep sounding the alarm?  It sounds pretty clear to me that you have a gluten problem, Stormy.  You stay on board and figure it out.  Sorry, you are going through a challenge.  I hope you find definitive answers.



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Posted 03 May 2013 - 12:31 PM

I blew off my symptoms for my entire life after doctors told me that it was normal for me. They were wrong. Pain and discomfort is NOT normal. Try not to doubt yourself. You have definitely discovered that you have a gluten intolerance, now you just need to get blood tests to determine if it is celiac disease or the more common non-celiac gluten intolerance (NCGI).

Best wishes.
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Nicole Posted Image

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ITP - 1993
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Posted 11 May 2013 - 05:38 PM

I go back and forth everyday...one minute thinking, "gluten is absolutely, without a doubt, 100%, poison to my system," and then an hour later, I'm thinking, "it's all in my head, I'm making things out worse than they are..." Blah blah blah blah blah. Ive always been a "innocent until proven guilty" kinda girl, so maybe this is my brain giving gluten the benefit of the doubt until I have more tests? Or maybe it's just good old fashioned denial. ;)

Hope you get answers soon!
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If you're going through hell, keep going!



Jeremiah 29: 11-13 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." 




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Posted 11 May 2013 - 10:04 PM

I wasted 9 years 'mostly wheat free'. I had a hunch it might be gluten, but didn't research it or try the diet because it looked hard.

I still even get the odd stray thought maybe it's not gluten, despite a gluten challenge where I thought I might die, and a life totally transformed by being gluten-free.

All my doctors told me I was tired because I have young children. Except my current one, who tested me.

Gluten can affect the brain and moods too, so that may be affecting you. Does brain fog sound familiar?

The fact your brother is affected makes it more likely that you are too.

It's not so bad, honestly. My joints are way better now, and all kinds of symptoms have vanished.

Stick around and ask questions
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

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