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Diagnosed Celiac Disease 3 Years Ago, Still Not Getting Better


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#16 Gemini

 
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Posted 24 November 2012 - 04:36 PM

There was a period of time when I was on 40mg x2 Nexium 150mgx2 Zantac, and taking Carafate daily too.

I went to a nutrionist and he felt that I was suffering from to little and had me on a HCL regiment. When I was taking it I noticed my gas levels went down, I had less flatulence and burping after eating. I sort of just stopped though, I never saw a significant difference.

The PPI's do help my mouth status...when I took nexium before the mouth soars and coating seemed to go away for a little bit.

PPI's though give me all sorts of other problems though it seems when I take them like discomfort etc,


I just went and saw a doctor today about my throat / Tongue. My throat basically looks inflamed red and looks like constant nasal drip in the back, my tongue well looks like those pictures I left.

Doctor said didn't suspect it was thrush at all and just suggested me taking a nose spray and to brush my tongue with baking soda (i hate doctors....seems like a complete waste of money and visit)

I have nexium I can take....but I don't want to live on those type of drugs. Feel like its so horrible for you already being a celiac, and I believe in the after affects they leave you because I've gotten them.


They always do that.....pooh-pooh the idea of thrush. Thrush will give you a coating on your tongue that is white but your throat will be red and sore. You need to find out because if they give you antibiotics, then the thrush will get much worse. Antibiotics kill off the good bacteria in your gut that keeps candida in check. Maybe an alternative practitioner who will test for SIBO....or at least have any doctor who is willing to test you for that do so. Then you'll know which course of action to take.

I would use a digestive enzyme instead of the PPI, unless you have had a test to confirm it is high stomach acid. GottaSki is correct....usually it's the other way around and acid is low so you cannot digest your food properly. Long term use of PPI's can mess up your stomach badly.

I use Enzymedica Digest Gold and they are excellent. These are a digestive enzyme and help to digest your food, plain and simple....most celiacs can use a little extra help in the juices department! One pill with each bigger meal and they work wonders.

Sometimes the medical profession gets everything backwards! :blink:
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#17 merpaul

 
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Posted 25 January 2013 - 10:46 PM

They always do that.....pooh-pooh the idea of thrush. Thrush will give you a coating on your tongue that is white but your throat will be red and sore. You need to find out because if they give you antibiotics, then the thrush will get much worse. Antibiotics kill off the good bacteria in your gut that keeps candida in check. Maybe an alternative practitioner who will test for SIBO....or at least have any doctor who is willing to test you for that do so. Then you'll know which course of action to take.

I would use a digestive enzyme instead of the PPI, unless you have had a test to confirm it is high stomach acid. GottaSki is correct....usually it's the other way around and acid is low so you cannot digest your food properly. Long term use of PPI's can mess up your stomach badly.

I use Enzymedica Digest Gold and they are excellent. These are a digestive enzyme and help to digest your food, plain and simple....most celiacs can use a little extra help in the juices department! One pill with each bigger meal and they work wonders.

Sometimes the medical profession gets everything backwards! :blink:


Hi Gemini,

I know this is an old post, but I am hoping you will still respond! I am wondering if what I have could be a form of esophageal thrush. I've had a sore throat for 3.5 years now, it's incredibly painful and keeps me from talking most of the day. My throat and vocal chords are red and inflamed, and I've seen three ENTs who have all just said it's acid reflux. I've tried the meds, changed my diet, and raised my bed to no avail.

I don't think I have the white tongue coating, but I do have a decent sized white spot on the roof of my mouth, near the back, on my left side that you can see in this picture:

http://www.flickr.co...N08/8416353892/

You seem to have some good experience with this so I'm wondering if you think this sounds like thrush??

Btw, I've been on a lot of antibiotics throughout my life. My parents have told me recently that they took me to the doctor for a good ol' course of antibiotics all the time. I was their firstborn and they didn't know what else to do when I got a fever. Well, I'm 22 now, and I've had my fair share of antibiotics throughout the years that I can remember as well. What do you think?

Thank you!
Merp
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#18 Gemini

 
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Posted 26 January 2013 - 06:38 PM

Hi Gemini,

I know this is an old post, but I am hoping you will still respond! I am wondering if what I have could be a form of esophageal thrush. I've had a sore throat for 3.5 years now, it's incredibly painful and keeps me from talking most of the day. My throat and vocal chords are red and inflamed, and I've seen three ENTs who have all just said it's acid reflux. I've tried the meds, changed my diet, and raised my bed to no avail.

I don't think I have the white tongue coating, but I do have a decent sized white spot on the roof of my mouth, near the back, on my left side that you can see in this picture:

http://www.flickr.co...N08/8416353892/

You seem to have some good experience with this so I'm wondering if you think this sounds like thrush??

Btw, I've been on a lot of antibiotics throughout my life. My parents have told me recently that they took me to the doctor for a good ol' course of antibiotics all the time. I was their firstborn and they didn't know what else to do when I got a fever. Well, I'm 22 now, and I've had my fair share of antibiotics throughout the years that I can remember as well. What do you think?

Thank you!
Merp


Merp.......do you think you have acid reflux? Do you have any other symptoms of it, besides what you have now? Usually with thrush, you have a sore mouth and tongue, it can affect your taste buds and sometimes you get little white spots in your mouth and on your tongue. Your throat does look very red and irritated.

Have any of the doctors suggested culturing a swab of your throat to see if there is any bacterial overgrowth? They should at least do that and not just look and say it's acid reflux. They sometimes aren't much help but having a sore throat for that long means you have a problem and their solution did not help you.
Doesn't sound like acid reflux to me if their suggestions did nothing to help. Is it possible for you to ask one of the doctors to culture your throat? Overuse of antibiotics (which I was a victim of also), can relly mess up the balance in your GI tract. It could be thrush but it doesn't look like the usual symptoms that occur with it but that doesn't always mean anything.

I am sorry I couldn't be of more help to you. I think a culture should be done because it could be from overgrowth of something.
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#19 merpaul

 
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Posted 29 January 2013 - 07:46 AM

Merp.......do you think you have acid reflux? Do you have any other symptoms of it, besides what you have now? Usually with thrush, you have a sore mouth and tongue, it can affect your taste buds and sometimes you get little white spots in your mouth and on your tongue. Your throat does look very red and irritated.

Have any of the doctors suggested culturing a swab of your throat to see if there is any bacterial overgrowth? They should at least do that and not just look and say it's acid reflux. They sometimes aren't much help but having a sore throat for that long means you have a problem and their solution did not help you.
Doesn't sound like acid reflux to me if their suggestions did nothing to help. Is it possible for you to ask one of the doctors to culture your throat? Overuse of antibiotics (which I was a victim of also), can relly mess up the balance in your GI tract. It could be thrush but it doesn't look like the usual symptoms that occur with it but that doesn't always mean anything.

I am sorry I couldn't be of more help to you. I think a culture should be done because it could be from overgrowth of something.


GEMINI!

You are the most amazing human being to ever walk this earth. You cannot believe the amount of happiness (because of you) and anger (because of these STUPID doctors) that is coursing through my veins at the moment.

IT IS THRUSH!!!!!!!!!

Thank you. Thank you. Thank you. Thank you. Thank you. You have just saved me from 3.5 YEARS OF MISERY with seemingly no end in sight. Well, thanks to you I can finally see the light at the end of the tunnel. After reading your post here and doing a little more research, I finally confirmed it this morning. I've been vigorously brushing all that yelllow/white yeast off my tongue for the past few years thinking it was nasty food buildup. That's why you couldn't see it in the first picture I posted. Welp, here's a new one of my tongue, my little brother's, and the one I found on google a few minutes ago that matches both of ours exactly!

Mine: http://www.flickr.co...N08/8426299399/
My brother's: http://www.flickr.co.../in/photostream
Google: http://www.flickr.co.../in/photostream

I seriously cannot put into words what you have done for me. The words literally don't exist in the English language. Please accept my sincerest gratitude, and please please have yourself an amazing day. Let it marinate for the rest of your life. You have made an incomprehensibly large contribution to my life. I saw your response to my other post, so I know you've read what I've been dealing with, and I know a lot of people on this forum are suffering and looking for answers. I never dreamed of actually solving this by posting on this forum. I figured, "What the heck, I've got nothing to lose, and nothing but pain and exhaustion to look forward to if I continue to rely on idiotic, narrow-minded doctors." I've seen 4 different ENTs – who were allegedly very good. I have good insurance and was able to get appointments with people educated at Harvard, the University of Michigan, and Wayne State. That apparently means zip though, as does their specialty. And that's not even counting the other myriad of doctors I've run off to for every single other condition, many more complicated involving countless time consuming, expensive test. But those ENTs should have this down pat! I'm ready to throttle some people right now.

Anyways, I have to go now. I'm going to the doctor's this afternoon to get some antifugals!

Much love,
Merp
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#20 Gemini

 
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Posted 29 January 2013 - 12:14 PM

GEMINI!

You are the most amazing human being to ever walk this earth. You cannot believe the amount of happiness (because of you) and anger (because of these STUPID doctors) that is coursing through my veins at the moment.

IT IS THRUSH!!!!!!!!!

Thank you. Thank you. Thank you. Thank you. Thank you. You have just saved me from 3.5 YEARS OF MISERY with seemingly no end in sight. Well, thanks to you I can finally see the light at the end of the tunnel. After reading your post here and doing a little more research, I finally confirmed it this morning. I've been vigorously brushing all that yelllow/white yeast off my tongue for the past few years thinking it was nasty food buildup. That's why you couldn't see it in the first picture I posted. Welp, here's a new one of my tongue, my little brother's, and the one I found on google a few minutes ago that matches both of ours exactly!

Mine: http://www.flickr.co...N08/8426299399/
My brother's: http://www.flickr.co.../in/photostream
Google: http://www.flickr.co.../in/photostream

I seriously cannot put into words what you have done for me. The words literally don't exist in the English language. Please accept my sincerest gratitude, and please please have yourself an amazing day. Let it marinate for the rest of your life. You have made an incomprehensibly large contribution to my life. I saw your response to my other post, so I know you've read what I've been dealing with, and I know a lot of people on this forum are suffering and looking for answers. I never dreamed of actually solving this by posting on this forum. I figured, "What the heck, I've got nothing to lose, and nothing but pain and exhaustion to look forward to if I continue to rely on idiotic, narrow-minded doctors." I've seen 4 different ENTs – who were allegedly very good. I have good insurance and was able to get appointments with people educated at Harvard, the University of Michigan, and Wayne State. That apparently means zip though, as does their specialty. And that's not even counting the other myriad of doctors I've run off to for every single other condition, many more complicated involving countless time consuming, expensive test. But those ENTs should have this down pat! I'm ready to throttle some people right now.

Anyways, I have to go now. I'm going to the doctor's this afternoon to get some antifugals!

Much love,
Merp


Hello Merp!

While I am quite humbled to have been of some help to you, I seriously doubt that I am the most amazing person on the planet. I mean, really......that is a bit of an overstatement. ;)

I have a few questions.....are you going to be tested for thrush because it may be difficult to ask a doctor for anti-fungals without some testing to back up the use of them. They don't seem to have any difficulties diagnosing thrush in newborns, where this issue is common, but in adults or even teens? Nope....they never go there. I have a few things to tell you to keep in mind so here goes......

I aggressively treated my systemic candida problem with the help of a functional medicine MD. She recognised my problem without testing because I had thrush forever, it seemed. I also had other symptoms and it was all due to overuse of antibiotics as a child and teen and biggest of all....untreated Celiac Disease. What it took is this......I used Nystatin, which is an antifungal but an older one. I used it for about a year straight, while following an almost no sugar diet because sugar feeds yeast, big time. It was difficult but it worked really well and the problem has never returned. Following the gluten-free diet also helped tremendously because both of these problems seriously messes up your GI tract and it's flora. The point is to starve the candida by not eating sugar and when it starts dumping into your blood stream, you take it out with the use of antifungals. Be careful of antifungals because they can have nasty side effects so make sure you are under the care of a doctor. Yes, hard thing to say because they can sometimes be dolts but they are needed for some things. And I agree with you.....I live in Massachusetts, which is one of the BEST medical places in the world. We have teaching hospitals that people come to study in from all over the world and yet....I figured out my candida problem and diagnosed my Celiac and had to go BACK to these numbheads and request testing because they never figured it out. I am the poster child for Celiac and presented with classic Celiac....go figure!

A couple more things.....many people have candida problems which can be traced to undiagnosed gluten issues. DO NOT let them prescribe the oral med for thrush which is in a liquid solution. I cannot remember the name of it but they use it on newborns for ease of use. The antifungal is in a SUGAR syrup, which is about as stupid as it gets. Sugar feeds thrush and makes it worse and yet, they put the meds into a sugar solution so babies will swallow it. :huh: Use adult medication, if prescribed. It has been a long time since I treated mine so there may be newer stuff on the market that will do the trick.

As for your siblings and their celiac genetics.....what are you doing about that? Are you being tested or following a gluten-free diet? Do not let the AMA treat each problem separately because many times Celiac can affect everything and they still do not diagnose it well.

Keep me updated and if you have any questions, don't hesitate to ask for help. One more thing......did you know that the urge to throttle a medical professional is a symptom of Celiac Disease? :P
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#21 mushroom

 
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Posted 29 January 2013 - 12:26 PM

One more thing......did you know that the urge to throttle a medical professional is a symptom of Celiac Disease? :P


:lol:
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Neroli


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