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Diagnosed Celiac Disease 3 Years Ago, Still Not Getting Better


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20 replies to this topic

#1 Sniffy911

 
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Posted 20 November 2012 - 07:06 AM

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.
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#2 kareng

 
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Posted 20 November 2012 - 07:11 AM

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.
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#3 Sniffy911

 
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Posted 20 November 2012 - 07:26 AM

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
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#4 frieze

 
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Posted 20 November 2012 - 08:26 AM

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.
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#5 Sniffy911

 
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Posted 22 November 2012 - 04:43 AM

think prodcuts like glutino are causing a problem?
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#6 ravenwoodglass

 
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Posted 22 November 2012 - 08:38 AM

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.
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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)

#7 Sniffy911

 
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Posted 23 November 2012 - 03:26 PM

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.

http://tinypic.com/r/n7139/6

http://tinypic.com/r/309m2yc/6

http://tinypic.com/r/2u5x2sk/6
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#8 Gemini

 
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Posted 23 November 2012 - 07:01 PM

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.

http://tinypic.com/r/n7139/6

http://tinypic.com/r/309m2yc/6

http://tinypic.com/r/2u5x2sk/6


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.
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#9 GottaSki

 
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Posted 23 November 2012 - 07:35 PM

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.
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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 :)


#10 Sniffy911

 
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Posted 24 November 2012 - 12:15 AM

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.
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#11 GottaSki

 
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Posted 24 November 2012 - 01:15 PM

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.
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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 :)


#12 Vicky_1989

 
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Posted 24 November 2012 - 01:31 PM

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!
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24 years old from England.

Pernicious Anaemia - July 2007
Coeliac Disease - March 2011
Gluten-free - March 2011

#13 Sniffy911

 
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Posted 24 November 2012 - 03:26 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.
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#14 Sniffy911

 
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Posted 24 November 2012 - 03:28 PM

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.
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#15 mushroom

 
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Posted 24 November 2012 - 04:36 PM

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.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
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