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Progressively Getting Worse...seeing Doctor Tommorow...again


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15 replies to this topic

#1 scottyg354

 
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Posted 23 February 2012 - 10:52 AM

Ok guys, I know I keep posting on here and am probably annoying the hell out of you but I have a few more questions I need to ask. First off I am going to see my doc tomorrow for my bi monthly checkup (thyroid, bp, ect). We have been discussing my stomach issues. Over the last year I had a colonoscopy and a celiac panel. I was eating pretty much gluten light (as I was not really worried about cross contamination) for about 2 weeks prior to gettng the panel done. It came up negative, with my Gluten/Giladin IgG only the very slightest elevated. My colonscopy also showed no issues in the large bowels. Anway, I have low carbed on an off for the last year since and have seen some relief in my symptoms, when I was on the diet. (Please note I was never a big grain guy to begin with.). When I would go off the low carb my mild symptoms would return, like I said I am not much of a grain guy, maybe a little shake and bake or a sandwhich everyone once in a while but thats about the extent of it. U


I started seeing a dietician about two weeks ago and she has me on a high fiber cereal in the AM (Fiber One, Kashi) and has me eating a lean meat sandwhich on whole wheat for lunch. Well the first couple of day weren't bad. Now recently my left sided pain has returned, its curving around my back, and towards the center of my stomach. I get some burning in the cent of my stomach as well as some naseua. I am constipated probably worse then ever right now, and I keep getting these dizzy spells. I am also starting to experience some odd pains in my arm and leg which I never had before, almost like brief shooting pains that come and go. This part is gross. The stools that I do manage to get out are usually only what I can compare to as a gold color or orange, but they always show up yellow on the toilet paper (sorry for to much info). Only things off on my blood work are my Calcium (278 bottom of range is 280) and my liver ALT was raised (98 were 75 is top of the range),I am also having a current flare up of boils and my thyroid is still elevated @ 5.8 which my levo was just upped to .200 for.

Anyways, do you guys think it would be worth paying for another panel since I was gluten free before the last one? Is the anything else I should ask for? Allerygy Testing? I'm kind of at a loss and am not sure whats causing this. Anyone else have symptoms like these? Like I said my colon was totally clean when I had the colonoscopy, one poly that was it, so I am assuming Crohns and UC are out of the question? Any help would be great. These symptoms are not unbearable yet, but they are getting worse.
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#2 ravenwoodglass

 
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Posted 23 February 2012 - 11:09 AM

The couple of days before you reacted are not unusual for a gluten reaction. If you do want to do more celiac testing stay on the diet you are now on, with all the kashi and whole wheat bread etc. for a couple to 3 months more and then get the celiac screening done. You could still have a false negative though. When you say your first panel was only slightly elevated was it in the positive range? If it was then you do need to be gluten free.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Honey015

 
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Posted 23 February 2012 - 11:22 AM

Hi! I went gluten free for one month out of curiosity because I have so many symptoms that fit celiac (at least 20). I saw my doctor who ordered the anti endomysial (anti tissue transglutaminase) test, a week later, giving me just a week to eat gluten again. I didn't feel like my symptoms were as bad as I was expecting during the week back on gluten, considering I had had some pretty quick reactions to it when glutened by mistake while gluten-free. My test came back negative, and my doctor has dismissed celiac. Anyway, it's been about five weeks back on gluten now, out of my stubborness to accept the negative result, and I have continued it because I have bought a home test and wanted a better result. Over this last week, my original symptoms are back with a vengeance. The grumbling, bubbling stomach all the time, discomfort and nausea for hours after eating, daily diarrhoea which is yellowy cloloured and floats (nice), and my horrendously itchy elbow rashes are flaring.

I hope this is helpful. Good luck to you.
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#4 scottyg354

 
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Posted 23 February 2012 - 11:34 AM

The couple of days before you reacted are not unusual for a gluten reaction. If you do want to do more celiac testing stay on the diet you are now on, with all the kashi and whole wheat bread etc. for a couple to 3 months more and then get the celiac screening done. You could still have a false negative though. When you say your first panel was only slightly elevated was it in the positive range? If it was then you do need to be gluten free.


There were three ranges negative, possible (not the exact word but thats what it means) and postive. I was only in the possible range. I forget the exact number but it wasn't to high above negative. Do these symptoms sound like they could be gluten related. I am really hitting a dead end with my problems as nothing is turning up.
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#5 scottyg354

 
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Posted 23 February 2012 - 11:36 AM

Hi! I went gluten free for one month out of curiosity because I have so many symptoms that fit celiac (at least 20). I saw my doctor who ordered the anti endomysial (anti tissue transglutaminase) test, a week later, giving me just a week to eat gluten again. I didn't feel like my symptoms were as bad as I was expecting during the week back on gluten, considering I had had some pretty quick reactions to it when glutened by mistake while gluten-free. My test came back negative, and my doctor has dismissed celiac. Anyway, it's been about five weeks back on gluten now, out of my stubborness to accept the negative result, and I have continued it because I have bought a home test and wanted a better result. Over this last week, my original symptoms are back with a vengeance. The grumbling, bubbling stomach all the time, discomfort and nausea for hours after eating, daily diarrhoea which is yellowy cloloured and floats (nice), and my horrendously itchy elbow rashes are flaring.

I hope this is helpful. Good luck to you.


See, I'm more on the C side then diarrhea. Although I do get D occasionally and it is very large movements. Most of the time my bms are off colored and mishaped if I can go at all.
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#6 lost36

 
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Posted 23 February 2012 - 02:26 PM

I also have the same symptoms. When you mentioned the yellowish gold on the tissue paper I have the exact same thing. Does this have a strange ammonia like odor also? No one can tell me what it is
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#7 scottyg354

 
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Posted 23 February 2012 - 02:44 PM

I also have the same symptoms. When you mentioned the yellowish gold on the tissue paper I have the exact same thing. Does this have a strange ammonia like odor also? No one can tell me what it is


This is going to sound gross but yes, it almost has like a burnt metal type smell to it. Really odd. I don't know.
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#8 ciamarie

 
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Posted 23 February 2012 - 07:06 PM

It certainly sounds like it very likely could be related to gluten. I agree with what ravenwoodglass said. Do you have the actual test results with reference ranges, or can you get them, and then post them here? I know there's one test (IGG I think?) that is most specific to gluten antibodies, so if it's elevated at all (equivocal I think they call it), it's still pointing to gluten intolerance if not celiac. If it was at all elevated while you were gluten lite, that would be an even stronger indicator, imo.

If that's the case, you could save yourself from having to go through more testing and get to give up those 'healthy whole wheat' sandwiches.
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#9 scottyg354

 
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Posted 24 February 2012 - 08:39 AM

It certainly sounds like it very likely could be related to gluten. I agree with what ravenwoodglass said. Do you have the actual test results with reference ranges, or can you get them, and then post them here? I know there's one test (IGG I think?) that is most specific to gluten antibodies, so if it's elevated at all (equivocal I think they call it), it's still pointing to gluten intolerance if not celiac. If it was at all elevated while you were gluten lite, that would be an even stronger indicator, imo.

If that's the case, you could save yourself from having to go through more testing and get to give up those 'healthy whole wheat' sandwiches.



Went to see the doc. He has me doing another Celiac Panel in about 6 weeks. Also checking Vitamin D, B12 and Folate as well as an abdominal ultra sound, hepatitis panel and hida scan. So this should at least hopefully give me some answers. He also said that if my labs for my thyroid aren't lower this time around that we are going to try out Armour.
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#10 llama3

 
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Posted 24 February 2012 - 10:44 AM

I don't know, but

Now recently my left sided pain has returned, its curving around my back, and towards the center of my stomach. I get some burning in the cent of my stomach as well as some naseua. I am constipated probably worse then ever right now, and I keep getting these dizzy spells.


those are all symptoms that I get when I eat gluten.

Let us know how the panel goes.
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#11 scottyg354

 
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Posted 24 February 2012 - 11:00 AM

I don't know, but



those are all symptoms that I get when I eat gluten.

Let us know how the panel goes.


I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.
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#12 llama3

 
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Posted 24 February 2012 - 11:07 AM

I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.


That sounds similar to what happens to me. I get the nausea in waves and sometimes it feels more like cramping, sometimes it's more vague and dispersed. The pain in my left side can also be either so vague that I'm not sure if it's actually there, or really concentrated like being stabbed.
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#13 scottyg354

 
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Posted 24 February 2012 - 11:44 AM

That sounds similar to what happens to me. I get the nausea in waves and sometimes it feels more like cramping, sometimes it's more vague and dispersed. The pain in my left side can also be either so vague that I'm not sure if it's actually there, or really concentrated like being stabbed.


All I know is I hope I find out what the hell it is.
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#14 lost36

 
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Posted 25 February 2012 - 03:37 AM

All I know is I hope I find out what the hell it is.


I'm still trying to find out whats wrong with me too. When you mentioned about the yellowish subtance with the stool is what got my attention. I have the same thing and havent found many answers on the net about it. Mines has an ammonnia/chemical odor and the only thing that i've found on the net that causes that is Bacteria overgrowth of the small intestines. That can cause a whole host of other symptoms also like , constipation/diarhea, bloating, adomenal pain, gassy and weight loss. Please keep us updated and hope everything goes well.
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#15 Bubba's Mom

 
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Posted 25 February 2012 - 06:00 AM

I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.

I've been getting this as well, but the pain radiates to the right side of my back. I'm guessing it might be gallbladder in my case? I was given a HIDA scan and my function is at 30%. I was told to consult a surgeon about having it taken out...which I don't want to do.

The condition is called billiary dyskenesia, and can be made worse by PPI medications, so I went off mine to see if it's gets better. It's pretty common for Celiacs to have GB problems.

Hang in there...it's scary not knowing what's going on. I hope they can figure this out for you.
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