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Do any of there symptoms sound familiar?

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Celiac Disease
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axm12
New Member
Joined : Jan 2010
Posts : 4
Posted 1/19/2010 7:11 PM (GMT -8)

Hello all - I'm new to the forums here as I'm starting to get frustrated not only with my condition but also with the inability or unwillingness of the doctors I've seen to diagnose my ills. So, here goes:

 

I have been experiencing some troublesome symptoms which could be related to Celiac Disease, IBS or something along those lines. I had to run to the ER thinking that I was having a heart attack. Pain in the chest, problems breathing, numbness in both arms followed by dizziness and feeling of blacking out. Well thankfully after stress test and CT scans and ultrasound of the heart all is fine in that area. But I still experience dizziness, feeling of fainting, some feeling of air or liquid coming back up in my chest followed by a almost state of fainting. I have realized that if I take a  gas relief pill it goes away. I also have a bad digestive tract. Food comes out sometimes exactly as it came in, such as salad and tomatoes. I don’t eat too many carbs… Just white cheddar popcorn or pretzels (no pasta , rice , potatoes). Just mainly vegetables and lean proteins. I am scared because I have not felt healthy since last September.. I am never 100%. Sometimes I walk around feeling like I have vertigo… I also get a very bad flavor in the mouth almost thinking that it could be bad breath, it does not last long just few minutes and then goes away. Could you please let me know if you have experienced any of these symptoms. I am 31 years old , not overweight I work out 5 to 6 days a week and I am also eager to become  a mom. I just want to be as healthy as possible before-hand. I have seen a couple GI docs and neither has listened to me very attentively and no diagnosis has yet been made. It is quite obvious though that I’ve got some form of a GI problem.

 

PS: I just had an endoscopy done last week which did not reveal anything alarming!!

.

Thank you for your help. Anything will be appreciated.

 

Does this sound like it could be Celiac Disease?

Post Edited (axm12) : 1/19/2010 8:14:55 PM (GMT-7)

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FamilyGuy
Forum Moderator
Joined : Jan 2004
Posts : 3476
Posted 1/21/2010 7:55 PM (GMT -8)
Celiac Disease presents in a variety of ways. No two people have the same symptoms. What type of endoscopy did you have? A positive blood tests and positive EGD are the gold standard for diagnosis.

And welcome to the forum!
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axm12
New Member
Joined : Jan 2010
Posts : 4
Posted 1/22/2010 12:47 AM (GMT -8)
I am still waiting on blood test results as well as the ones for the endoscopy. I will post it when received. Thank you for your interest.
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Ouch101
Regular Member
Joined : Dec 2009
Posts : 37
Posted 2/3/2010 4:26 PM (GMT -8)
I read something similar once on another forum--I think it was the Crohn's disease forum.
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searching4hope
New Member
Joined : Oct 2010
Posts : 12
Posted 10/5/2010 1:21 AM (GMT -8)
It will be interesting what your blood test shows. But just a heads up, I did not show in blood work for positive celiac. I had a biopsy that finally came back with a positive celiac result. Another idea that came to mind is maybe get blood work on any vitamin difficiencies. One of the signs for celiac that my doctor caught on to was that I was long on B3, B6, B12, foliac acid, and vitamin D. I guess with celiac your intestines have a hard time breaking down vitamin B's and that's a realy red flag. I now take B12 shots once a week. B12 helps rebuild damage to your intestines. Keep us posted on your blood test results.
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JRBear
Regular Member
Joined : Oct 2011
Posts : 127
Posted 12/9/2011 6:30 PM (GMT -8)
I just recently had blood work to be tested for celiac disease. I will try and keep this as short as possible. I have a several autoimmune things going on and I know that I have a calicum definciancy. This could seriously for me be the missing link as to why I am still not feeling great. Even though I take medicine every day for my thyroid issues I still just don't feel well. When I have thyroid check it always comes back in the normal range. I have a feeling these next couple of months are going to be interesting to say the least. I just had the lab work done this past wednesday. I want to be able to say I feel good and mean it. I"m so tired of faking it a lot of the time. I can put up a good front. I finally went to the doctor with my tummy woes that I've been dealing with for a long time and he immediately suggested celiac disease. that's when he ordered the lab and a colonoscopy. I guess we'll go from there and wait and see.
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Tash74
Regular Member
Joined : Jan 2012
Posts : 22
Posted 1/1/2012 4:52 AM (GMT -8)
Sounds like helicobacter pylori.

Its a nasty bacteria that burrows in the lining of your stomach & certain foods flare it up & make your symptoms worse.

I've suffered with IBS symptoms & anxiety my whole adult life. I found Gluten Free diet in the last few years has helped tremendously & I have loads of energy, no constipation, pain, wind, mucus in stools (sorry grose I know) 20 years later I've been diagnosed with Helicobacter (why the Doctors didn't check for that when I first started getting chronic diarrhoea, cramps, weight loss etc I don't know).

My Dad's always had stomach problems, we thought it was a genetic bad stomach. He recently had a breath test & confirmed he had Helicobacter, people living together catch it off each other & I had a blood test to confirm I have it. I've had a course of antibiotics but don't feel they have worked as I don't feel any different. I feel a lot better from eating a gluten free (regular painless BM's, not anaemic etc) , low dairy diet and avoiding Vinegar & tomatoes have stopped the diarrhoea. I need to fast & do a breath test to see if it the bacteria is still present. But I recommend anyone who is having tummy troubles, constipation, diarrhoea, anaemia, infertility, miscarriage, anxiety, depression, low energy get tested for Helicobacter Pylori ASAP. Its bacterial & so easily contracted, I wouldn't be surprised if 50-80% of the population have it. Good luck! Please let me know how you go?
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narol
New Member
Joined : Nov 2008
Posts : 10
Posted 1/4/2012 9:46 AM (GMT -8)
You said no common ground.  Please be aware that multiple issues often confuse diagnosis.  I tested negative for Celiac.  I then had an endoscopy and biopsy that indicated celiac.  The test done at Promethius labs indicated celiac.  I went on a gluten free diet.  It did helped some, but did not resolve the issues. 

I found that in addition to gluten, I had to avoid dairy, chocolate, and citrus.  If I eat any of these today, I am fine, but gradually, I start to feel pretty bad and wonder why.  If I go off of them again, take vitamins that are gluten free, and take Align probiotic I start to heal and feel better.  It is not an overnight issue.

With just the gluten situation, because I am so careful with my diet, I find that I can occasionally tolerate small amounts of gluten(such as eating a dip where someone has dipped a wheat cracker before I dipped my celery) unless I have been exposed and become sensitized.  Then, even the smallest amounts send me after my heating pad and the bathroom.  After that, I do not heal until I get all the other stuff out of my diet as well.

Other people have other foods that confuse the issue.  With some it is corn.  Others it is potatoes.  There are others.

To feel better and give yourself a starting point to figure out what is getting you, try looking up the GARD diet online.  I have found it useful in determining my food problems.  Be aware that some foods have a delayed reaction in that you eat them, everything seems fine for a day or two, then they hit.  Other foods seem to be a problem only when eaten in combination.  The problem is that there does not seem to be much guidance from the medical profession in finding out which foods are the triggers.

Good luck to you, and try the GARD diet.

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narol
New Member
Joined : Nov 2008
Posts : 10
Posted 1/4/2012 10:09 AM (GMT -8)

Tash74 said...
Sounds like helicobacter pylori.

Its a nasty bacteria that burrows in the lining of your stomach & certain foods flare it up & make your symptoms worse.

...I've been diagnosed with Helicobacter (why the Doctors didn't check for that when I first started getting chronic diarrhoea, cramps, weight loss etc I don't know).

...He recently had a breath test & confirmed he had Helicobacter, people living together catch it off each other & I had a blood test to confirm I have it.

 

Tash, I had a negative test for hPylori, but not a breath test.  Has anyone heard of  false negatives with tests for hPylori? 

 

I am in my fifties and my celiac was discovered 3 years ago after complaining of stomach pain for 3 years.  Because drugs like omiprezole(Spelling?) and ranitadine(sp?) had little effect and may even have made the pain worse, my primary doctor started treating me like it was all in my head. 

I finally insisted on a GI doctor, and he found celiac. The gluten free diet helps, and by eliminating dairy, chocolate, soy, and citrus as well, teh lower abdominal part is under control.  I still have the esophageal pressure which is often combined with nausea.   After so long, I get depressed and feel like I will never feel well.  Then, for maybe a week or two, I start to feel better and get hopeful before the problems return. 

It is now made worse with seizures, other neurological problems, and doctors who point their fingers at one another and avoid me.  My celiac doctor thought he was giving me bad news when he told me it is possible that celiac is responsible for my neurological problems, but I felt like hugging him because he was the first to not say that it is all in my head!

I know there is an answer out there.  Any guesses?  Any advice on the next steps?

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SmurfyShadow
Veteran Member
Joined : Dec 2008
Posts : 2386
Posted 1/5/2012 9:31 PM (GMT -8)
Get a good rheumy. Rheumy doctors know many autoimmune diseases, and frankly you have something. Mod, this is on personal experience not medical training.
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narol
New Member
Joined : Nov 2008
Posts : 10
Posted 1/8/2012 12:55 PM (GMT -8)
Thanks for the advice, but how do you find a GOOD one in Upstate NY?  Two years ago I got a referral to one and was told it was not arthritis because I had too much motion in my joints.  No explaination for the pain or the other symptoms.  Seems like the specialists talk to my primary Dr and they gang up behind the excuse of "Mental health."  The Mental Health practitioners say I am under stress from the situation, but other than that I seem to be fine. 
How do I get someone who is willing to look for him/her self?
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SmurfyShadow
Veteran Member
Joined : Dec 2008
Posts : 2386
Posted 1/18/2012 7:54 PM (GMT -8)
Teaching Hospitals always has Rheumys :P
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