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What Is Wrong With Me

diagnosis

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#16 rube2112

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Posted 18 March 2013 - 05:45 AM

Hi, Thanks for everyone responding, I have had Prometheus celiac antibody test but not the genetic test.  I've been gluten free and dairy free for exactly 7 days.  My alternative MD has me on the following diet.  Wild caught cod, wild caught salmon, leafy greens, carrots.  Thats it.  I've been taking colostrum and it stopped the diarrhea, but I think it is also raising my immune system and make my whole gut ache a little worse every day.  I picked colostrum because of its track record with c-diff.  I'm thinking about trying to beg someone into ordering the cyrex gluten sensitivity test, but I serlously doubt that I will get it.  My lower back pain is getting worse for some reason and my eyes are constantly running.  There just seems to be no end.  Robb

 

 

 

Could not have said it better myself - and yes IrishHeart and I both have walked in your painful - frustrated - sick to death of doctors dismissing our symptoms - shoes.

 

I still wake each morning in a great deal of pain -- a 15-20 minute soak in hot epsom salt bath gets me moving and then unless I run into a food from my no-no list I am generally full steam until evening -- it has been at least ten years since I could say that! 

 

If doctors have run ALL of your celiac antibody tests then remove gluten as soon as possible.  If you are unsure if everything has been run - post them here and we can help sort out if you need other tests -- then demand, don't ask for them -- our doctors work for us -- even though they often forget this ;)


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#17 kareng

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Posted 18 March 2013 - 05:50 AM

Sorry you are having so much trouble and feeling so down. Don't want you to waste your money, too!


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#18 IrishHeart

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Posted 18 March 2013 - 06:06 AM

As Karen has pointed out, there is no valid test for gluten sensitivity just yet. Save your cash.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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#19 GottaSki

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Posted 18 March 2013 - 07:09 AM

Hi Robb-

 

Has your pain increased on the diet you just listed?  If so, it is entirely possible it just is not the correct combo for you. For instance I consumed quite a bit of fresh spinach over the past few years -- thinking it was the best green for me -- WRONG -- it is high in histamine -- if you have severe damage in your small intestine - your body can't produce the enzyme necessary to regulate histamine.

 

Perhaps your body doesn't want that much fish?  Can you substitute chicken, beef or pork for a few days to see if it helps...

 

I completely understand the frustration that comes when you discover while eating seamingly perfect foods - they are not the right ones for your body.

 

Also, you are only at 7 days...your body could simply be detoxing -- I never really detoxed when I removed gluten -- but when I did a complete elimination diet -- it took my body about two or three weeks to detox.

 

PS>>> I agree -- don't waste your money on those tests.


Edited by GottaSki, 18 March 2013 - 07:11 AM.

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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 :)


#20 rube2112

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Posted 18 March 2013 - 07:20 AM

Hi, I honestly am so weary that I have no idea what try.  I've been unable to work since aug....My stomach hurts so bad today that I havn't eaten at all.  My latest ridiculous diagnosis is reactive hypoglycemia.  The only problem with that is that I've monitored my sugar for several days and it sits at 85 whether I eat or not.  The doctor that gave me that diagnosis argued with me and told me she was positive thats what my problem was.  She is wrong.  The dumb guesses these doctors are making isn't helping me at all.......Robb

 

 

 

 

Hi Robb-

 

Has your pain increased on the diet you just listed?  If so, it is entirely possible it just is not the correct combo for you. For instance I consumed quite a bit of fresh spinach over the past few years -- thinking it was the best green for me -- WRONG -- it is high in histamine -- if you have severe damage in your small intestine - your body can't produce the enzyme necessary to regulate histamine.

 

Perhaps your body doesn't want that much fish?  Can you substitute chicken, beef or pork for a few days to see if it helps...

 

I completely understand the frustration that comes when you discover while eating seamingly perfect foods - they are not the right ones for your body.

 

Also, you are only at 7 days...your body could simply be detoxing -- I never really detoxed when I removed gluten -- but when I did a complete elimination diet -- it took my body about two or three weeks to detox.

 

PS>>> I agree -- don't waste your money on those tests.


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#21 rube2112

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Posted 19 March 2013 - 05:29 PM

Merry Christmas..........my C-Diff is back........Robb

 

 

 

Robb, you sound a lot like me and my friend Sherry (Dxed with c-diff in tandem with her celiac DX).

Do not give up. 

 

I was a mess before my DX. I even tried methotrexate (against my better judgement) upon the insistence of a snarky rheumatolgist. It made my gut worse and did nothing for the joint/bone pain. If a gut is impaired, meds can make us feel ten times worse. The meds are not absorbed. and may instead circulate in the body. I still can't tolerate medications at all. 

 

Your negative celiac tests are perplexing, but not uncommon. My celiac panel was negative, yet I have celiac.

And you could be gluten intolerant (not a celiac YET) and still have all the symptoms and AI diseases you have mentioned.

 

You need a better GI doctor. I wish you lived in NY...I'd walk you right into my guy in a heartbeat. You deserve to be taken seriously.

 

Please do not give up. I was in your boat for 3 years and I am a different person 2 years later. I have reclaimed my life and you can too.

 

I know that C-diff responds well to probiotics.  Lots of Pub Med journal articles on this, so please consider taking them.

Give the gluten-free/DF diet a strict trial for several months. Try to be patient (I know that is hard when you are in pain and feeling like total shyte, but please believe me, Lisa (Gotta Ski) and I GET IT. ) We share your painful symptoms,  but we have also improved drastically off gluten. We had a long road, but we're living proof healing happens. 

 

Dismissed by dozens of docs for many years, we know full well how frustrated you are.  But, you are not alone. 


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#22 GottaSki

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Posted 19 March 2013 - 05:32 PM

Merry Christmas..........my C-Diff is back........Robb

 

Hang in there....IrishHeart is spot on...you are not alone - many of us have been through similar frustrations.  It can get better.


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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 :)


#23 rube2112

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Posted 19 March 2013 - 06:17 PM

This is round three.  I honestly don't think its going to get better because of the inflammation in my gut.  I've had that same exact problem with my sinus infection for the last 15 years.....now its in my gut.  All of the vancomycin in the world isn't going to clear it up.  Robb

 

 

 

 

Hang in there....IrishHeart is spot on...you are not alone - many of us have been through similar frustrations.  It can get better.


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