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Member Since 16 Mar 2013
Offline Last Active Mar 28 2013 05:56 PM

Posts I've Made

In Topic: What Is Wrong With Me

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.

In Topic: What Is Wrong With Me

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. 

In Topic: What Is Wrong With Me

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.

In Topic: What Is Wrong With Me

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 ;)

In Topic: What Is Wrong With Me

17 March 2013 - 04:45 PM

Thanks, I just wish my stupid doctors would listen to me when I try to explain how bad I feel.  The methotrexate has done absolutely nothing.  In fact, I think it has made me worse.  I'm due to take it tomorrow and I think I'm going to stop it.  Its dangerous and isn't helping anyway.  Robb

Ok, well Lupus at 48 is rather uncommon. Even if you did have Lupus, why would you end your life? Would you really want to succumb to this? You have to be stronger than that! My grandfathers brother had Lupus, guess what age he lived to? 92, no I am not kidding you NINETY-TWO. My grandfather who was perfectly healthy lived until 88. Lupus is known to often go into long periods of remission in which some people can even reach nearly a decade of symptom resolution. Would you rather not have it? Of course, everyone on this forum would like to be able to eat gluten without it destroying their intestines but you learn to cope and you become stronger because of it.

You sound like you are in awful shape right now, so it can only get better from here. If you get diagnosed with lupus, well guess what? You get treatment, and it will help push it into remission. At this point, it is only upwards for symptoms so don't give up and don't even think about ending your life because of it! There are a lot of people here that have multiple autoimmune diseases, they are all doing fine. 

Go look through my old threads about my panic about Celiac when I was first faced with it's probable reality, I look back on those posts and laugh now. I also had a childhood friend that was diagnosed with Lupus very early and he is as healthy as anyone else, in fact at this point I would say he is in much better shape than me and most of my friends. The anxiety and depression that come with being newly diagnosed are temporary, you are in a TEMPORARY state of mind right now so it is very important to not act out in any harsh way because of it. 

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