Diagnosed Celiac Disease 3 Years Ago, Still Not Getting Better

[Sniffy911]

Hello All ! I just wanted to post a little story on what's happened in my past.

Firstly...My senior year in highschool (17 at the time, Male) One night i went to sleep and suddenly felt like I lost breath and started hiccuping non stop. I went to the E.R. and they said I looked fine except I had a sinus infection. Months passed and I was still having problems mostly with this feeling of shortness of breath. I then began to start getting stomach pains. Pains were just mostly really bad cramps and they would very in level on and off. After a year of these pains and multiple testing (Including a lot of breathing tests/asthma which i was fine with all of and told I had very good lungs) to seeing a GI doctor that ordered blood work for me. It was then he informed me that I showed sensitivity to Celiac Sprue and I got an EGD and Biopsy done which confirmed it.

I have been gluten free for about three years now. I have been trying my best on my own to stick to a clear gluten free diet and use gluten free products. My stomach was feeling better, but my breathing still felt the same until this last december in 2011 where I started getting bad stomach pains again.

I've gone through another 2 additional EGDs, Colonoscopy, Esophogram, Barium Swallow, Upper GI w/ lower GI follow through, Hida Scan, Food Emptying test and maybe more that I can't think of. Only thing thats shown is my damage villa and gasritis.

My symptoms have gotten worse though. Mostly having to do with my throat and mouth area. I started having difficulty swallowing and had a lot of burping/gas. My throat is always red and I always have white goop in the back of my throat and my tounge is coated and will sometimes get these spots over it and will feel really soar.

My GI doctor says Its reflux and so has my ENT. I saw a surgeon about possible surgery for such a problem, but when he looked over my tests he said there is zero evidence of such a thing occuring.

I can barely eat a lot of food that doesn't bother me and my throat and I'm taking 150zantac x2 and a 40mg ppi x1.

I'm losing weight because I can't eat much and weigh 117 pounds and I am 5-8"

Ontop of this I just found out I am in stages of osteoporosis and am actually about to get what I think is called a reclapse? In about 2 hours.

Has anyone had these sort of problems with Celiac Disease, or has anyone done anything that has helped them ?

At 21 years of age I just feel like my life has been cut short of who I once was because I always feel miserable.

I don't go out much because of my problems and its hard to enjoy anything.

[kareng]

Are you saying you still show signs of villa damage. For a Celiac, that should go away on a gluten-free diet. Did they re- run your Celiac blood panel to see if you are still making antibodies?

There is a thing called refractory sprue where you don't heal. It is rare. If the current endo and the blood work are still positive, I would try to tighten up your diet.

[Sniffy911]

I had 2 EGDs this year, I believe my last one was around April. In the report I think they said it was a decrease and flattening of my villa and some minor gasritis. I haven't had a follow up Celiac blood panel sense I showed celiac sprue sensitivity in 2009 and had my first EGD to confirm it.

I feel like my diet is pretty much extremely limited as it is because of these gerd like symptoms I experience. I don't eat any chocolate, mint, citrus, dairy, tomatoe type sauces, alcohol etc.

I mostly live off things like Eggs, Bacon, Chicken, Fish, Pot Roasts, Vegtebales and gluten free snacks

[frieze]

I had 2 EGDs this year, I believe my last one was around April. In the report I think they said it was a decrease and flattening of my villa and some minor gasritis. I haven't had a follow up Celiac blood panel sense I showed celiac sprue sensitivity in 2009 and had my first EGD to confirm it.

I feel like my diet is pretty much extremely limited as it is because of these gerd like symptoms I experience. I don't eat any chocolate, mint, citrus, dairy, tomatoe type sauces, alcohol etc.

I mostly live off things like Eggs, Bacon, Chicken, Fish, Pot Roasts, Vegtebales and gluten free snacks

You aren't going to like this......can the glute free snacks, asap.

[Sniffy911]

think prodcuts like glutino are causing a problem?

[ravenwoodglass]

think prodcuts like glutino are causing a problem?

Have you tried eliminating soy in your gluten-free snacks? Many Glutino products do contain soy. It is worth a shot to give it up for a bit and see if it helps. Also are you living in a home with gluten eaters? If so are you doing all you need to protect yourself from cross contamination? Things like sharing butter, pnut butter, toasters, strainers etc can be a real issue for us.

[Sniffy911]

I have been trying to stay away from soy as much as possible, but I haven't completely eliminated it from my diet.

Also I do make sure I keep the kitchen clean and that I don't cross contaminate or share with gluten eaters.

I took some pictures of my tongue which I wanted to share if anyone had advice or if it's happen with them with celiac, but like I said my main concern seems to be my throat always being soar and raw and my tongue.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[Gemini]

I have been trying to stay away from soy as much as possible, but I haven't completely eliminated it from my diet.

Also I do make sure I keep the kitchen clean and that I don't cross contaminate or share with gluten eaters.

I took some pictures of my tongue which I wanted to share if anyone had advice or if it's happen with them with celiac, but like I said my main concern seems to be my throat always being soar and raw and my tongue.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Sniffy.......judging from your pics of your tongue (ain't technology great!), it looks to me like you have thrush. Basically a yeast infection that can be systemic in nature and is very common with Celiacs and others with a compromised GI tract. I had problems with thrush

for years because my gut was so messed up from Celiac. Thrush will give you a white coating on your tongue, will make your tongue very sore and sometimes little white spots will appear also. Doctors are clueless diagnosing it and think it mainly occurs in infants.

It can be painful to eat and your tastebuds can be diminished, making food taste funny. My tongue looked just like yours at one time so

your description of what you are experiencing was very similar to mine.

Anti-fungals, mainly Diflucan, are usually prescribed for this and you need to be taking a good probiotic as it will help populate your GI tract with the good bacteria to fight fungal infections. Remember, your GI tract begins in your mouth. Sugar feeds yeast so it would help to limit sugar intake as well......not what most people like to hear, I know.

I would broach this with your doctor but there may be resistance. They rarely diagnose thrush in an adult. If they think it may be that, make sure they give you DiFlucan tablets and not the liquid med for thrush....that is in a sugar based liquid form which they use on infants that have thrush because they will swallow something sweet......not the treatment for adults. I really think it's thrush......I have way too much experience with this, unfortunately. However, once I was diagnosed with Celiac and got my gut healed and the bacteria all healthy again, I have never had it again. I did follow an anti-candida diet for awhile, which worked great but it's hard to do and that is reserved for stubborn cases. Thrush is a candida infection. I don't want to make your head spin. Candida can make your tongue and throat very red and very sore, with white patches or junk in your throat.....as you described. What infuriates me is that they always say it's acid reflux......the diagnosis du jour. It's like the only diagnosis they know!

I hope this info helps you find the problem but please look into thrush......it's a definite possibility.

[GottaSki]

I agree with Gemini - look into Thrush. Your problem could be yeast based or bacterial overgrowth or both. There are breath tests to determine bacterial overgrowth - but they are far from accurate. If it is yeast based you'll need DiFlucan and if it is SIBO (Small Intestine Bacterial Overgrowth) you may need antibiotics. With either probiotics are important.

Also, it is possible to have villi that remains unhealed that is not refractory. I have been extremely careful about gluten, we have a gluten free home and I never eat out and still had Marsh 3A and B Villi damage on my latest endo. This is an improvement over the total atrophy I had 3.5 years ago, but no where near the progress I should have had. The cellular changes in my case were not consistent with refractory celiac disease.

I do agree - ditch the gluten free snacks for now. Do your vegetables include potato, tomato and peppers (all types except black or white peppercorns) - these "nightshade" vegies are another group of foods that can be tough on a healing gut.

Hang in there...some healing is good - just not good enough - you can figure this out with help of doctors and perhaps a few more dietary adjustments.

[Sniffy911]

Thank you so much both for your insight ! If it is thrush I will be truly happy and look into that direction. I wonder if my GI meds are causing or contributing to the thrush as well. The thing i've noticed though is when i Do take a PPI like nexium or something I tend not to get the tongue soars, yet it usually still looks layered and my throat never seems to heal very well.

I will make a big effort to try and change up my diet some more and see what I can do about my diet and my snacks. For me cooking still seems like so much of a chore, so I'm not overly fond of it, but I know it's the best thing I can do.

I've always wondered if it could be something other than Gerd, and maybe it is, if so I think it'll give me some relief.

[GottaSki]

Do PPIs work for you? Many of us have too little stomach acid, rather than too much. PPIs reduce acid even further which can work against proper digestion.

Both probiotics and digestive enzymes can be very helpful when healing.

[Vicky-1989]

I'm sorry you're not feeling better yet, but I'm glad others were able to give you advice.

Main reason I'm commenting is because my tongue has been like that for over 5 years now - I've had tests for thrush, swap tests, etc. and it always comes back normal. My tongue is always swollen, looks EXACTLY like yours and is very sore at times. My doctor claims it's because of my vitamin B12 deficiency, have you had your levels checked?

Hope things get better for you, though!

[Sniffy911]

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.

[Sniffy911]

I'm sorry you're not feeling better yet, but I'm glad others were able to give you advice.

Main reason I'm commenting is because my tongue has been like that for over 5 years now - I've had tests for thrush, swap tests, etc. and it always comes back normal. My tongue is always swollen, looks EXACTLY like yours and is very sore at times. My doctor claims it's because of my vitamin B12 deficiency, have you had your levels checked?

Hope things get better for you, though!

My nutrionist did check my B-12 Levels. My folate was very low below normal, and my B was at the lowest part of the normal range. He suggested it was probably from the PPI's etc.

[mushroom]

Is this the first time you have had B12 and D checked? Most celiacs are deficient in these and need to supplement. What about other vitamins and minerals? They should be checked and supplemented, if necessary, too - A, E, K, ferritin/iron, potassium copper, zinc, magnesium. Magnesium and zinc with Vit.D are especially important for your bones. And I agree with the probiotic suggestion to help you absorb better from your food. And digestive enzymes would be another approach you could take for your stomach - help it out with the digestive process because celiac can negatively impact the pancreas.

Don't start everything at once - add them in one at a time. That way if you have a reaction you will know what it is to.

I hope you get on a healing path soon.

[Gemini]

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!

[merpaul]

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!

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:

Open Original Shared Link

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

[Gemini]

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:

Open Original Shared Link

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.

[merpaul]

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: Open Original Shared Link

My brother's: Open Original Shared Link

Google: Open Original Shared Link

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

[Gemini]

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: Open Original Shared Link

My brother's: Open Original Shared Link

Google: Open Original Shared Link

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. 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?

[mushroom]

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