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Newly "diagnosed" And Can't Take The Severe Abdominal Pain!


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#1 brookevale

 
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Posted 26 November 2011 - 05:10 PM

I have had the worst four months of my life. I became very ill four months ago--weird tingling in my back with nausea, vomiting, complete loss of appetite, severe abdominal pain, diarrhea, severe fatigue. It all started when I came down with mastitis and was prescribed Keflex (I had a baby by c-section 6 months ago). Doctors thought my illness was due to the keflex and mastitis, but the severe symptoms lasted three weeks before I was finally admitted into the hospital for five days to control my symptoms and sever malnoutrition/dehydration. Two days before being admitted to the hospital, I had an endoscopy that showed very red gastritis and bile in my stomach. Celiac biopsy was negative. Since getting out of the hospital, I have been getting better--can work on a reduced schedule and care for my baby. However, I have severe abdominal pain all around my belly button area--above and below. The pain varies from a burning pain to a feeling as though I did a thousand sit ups--bad cramping. Long story short, I came up positive for celiac in my blood tests. Since I went gluten free a month ago I have more energy and nausea is much less. I am very strict about not ingesting any gluten, dairy, tree nuts, or soy. Nothing is helping the pain. I take prilosec, zofran (for nausea), maalox, bentyl and neurontin for the pain. The neurontin helps a little, but makes me dizzy and disoriented so I can't take it until evening. Anyhow, had a colonoscopy which didn't show anything. I had my gallbladder out 13 years ago and have had pain under my right rib cage ever since (not bad enough to be debilitating or require meds).

Can celiac cause this pain in my abdomen that is so severe and absolutely nothing relieves it? I feel like I'm going crazy as this pain never stops! Does anyone have experience with pain and what may help it? My GI insists I don't have celiac because of the negative biopsy. However, my primary care, chiropractor, and a surgeon I am seeing all say I have celiac because of the blood tests. I see the surgeon guy in two days and want to advocate for an ERCP or exploratory laproscopic surgery. I am sick of feeling sick and desperate!
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~Brooke
After 14 years of pain in my right side and a year of vomiting, severe abdominal pain, starvation, feeding tubes, doctors telling me it's in my head, negative tests, I FINALLY was diagnosed with Sphincter of Oddi Dysfunction August 2012.
Never Never Never Give Up!
Believe in yourself when you know beyond a shadow of a doubt you have a condition that has not been diagnosed--it's NOT in your head.
I came up positive for the celiac genetic marker in 2011, but negative for sprue and blood antibodies in 2011 and 2012.
One doctor says I have celiac, another says I don't. Huh?

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#2 burdee

 
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Posted 26 November 2011 - 06:23 PM

I have had the worst four months of my life. I became very ill four months ago--weird tingling in my back with nausea, vomiting, complete loss of appetite, severe abdominal pain, diarrhea, severe fatigue. It all started when I came down with mastitis and was prescribed Keflex (I had a baby by c-section 6 months ago). Doctors thought my illness was due to the keflex and mastitis, but the severe symptoms lasted three weeks before I was finally admitted into the hospital for five days to control my symptoms and sever malnoutrition/dehydration. Two days before being admitted to the hospital, I had an endoscopy that showed very red gastritis and bile in my stomach. Celiac biopsy was negative. Since getting out of the hospital, I have been getting better--can work on a reduced schedule and care for my baby. However, I have severe abdominal pain all around my belly button area--above and below. The pain varies from a burning pain to a feeling as though I did a thousand sit ups--bad cramping. Long story short, I came up positive for celiac in my blood tests. Since I went gluten free a month ago I have more energy and nausea is much less. I am very strict about not ingesting any gluten, dairy, tree nuts, or soy. Nothing is helping the pain. I take prilosec, zofran (for nausea), maalox, bentyl and neurontin for the pain. The neurontin helps a little, but makes me dizzy and disoriented so I can't take it until evening. Anyhow, had a colonoscopy which didn't show anything. I had my gallbladder out 13 years ago and have had pain under my right rib cage ever since (not bad enough to be debilitating or require meds).

Can celiac cause this pain in my abdomen that is so severe and absolutely nothing relieves it? I feel like I'm going crazy as this pain never stops! Does anyone have experience with pain and what may help it? My GI insists I don't have celiac because of the negative biopsy. However, my primary care, chiropractor, and a surgeon I am seeing all say I have celiac because of the blood tests. I see the surgeon guy in two days and want to advocate for an ERCP or exploratory laproscopic surgery. I am sick of feeling sick and desperate!


You may have developed a bacterial infection in your intestines after you took the Keflex. Antibiotics kill both the good and bad bacteria in our intestines. If they kill of all our good bacteria, while killing off whatever other infection, like Mastitis, small (harmless) amounts of bad bacteria in our intestines can proliferate and cause big, bad infections. I've had 8 different intestinal infections (5 bacteria, 2 parasites and candida) after too many years of antibiotics for bladder infections, where treatment was not followed by high dose probiotics. All of those infections caused bad gut pain (cramping).

I don't know whether many mainstream docs give stool tests for gut infections. I went to naturopaths when I had those symptoms. The stool tests diagnosed the gut bug and described which drugs or herbals my specific 'bug' was sensitive to (which treatment would kill my 'gut bug'). During and after killing my bug, I took high dose probiotics (but really high dose after treatment to replace what my treatment killed).

However, you might also have other undiagnosed allergies. You could be allergic (delayed reacation IgG or IgA mediated allergies) to almost any foods. There are blood test which can diagnose those delayed reaction food allergies.
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#3 bigbird16

 
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Posted 26 November 2011 - 08:19 PM

Hi and welcome. I'm sorry you're in so much pain. Yes, most certainly celiac can cause pain that bad. If your blood test is positive, you have celiac. The endoscopy can happen to choose a not so damaged section and come back negative, so it doesn't mean jack if it's negative.

If you're avoiding dairy and soy as well, to help with rebuilding your gut flora after the keflex, So Delicious makes coconut-based yogurt and kefir (drinkable yogurt). Whole Foods and some Giant groceries carry it. They also make soy stuff, so make sure you get the coconut if you go looking for it. When my system is off-kilter, I find it helpful.

I hope you feel better soon!
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Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made

Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7

"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)

#4 beebs

 
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Posted 26 November 2011 - 08:32 PM

Burning pain sounds like it could be your gastritis - which can absolutely be caused by celiac, my son had chronic gastritis - which he was on medication on for almost a year plus gluten free for that whole time and its only just come good now. So 11 months gluten free and medicated.. :blink: Sometimes it would get so bad he would be screaming and he couldn't walk. Sometimes you have to play around with the PPI medications as well - to get the one that works best for you.
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HLA DQ8, gluten-free since January 2011

#5 TTNOGluten

 
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Posted 27 November 2011 - 08:16 AM

Brookevale
You and I have a very similar story I was a very healthy 41y/o guy, who developed strep throat 4 months ago, prior to that had been doing well, I started a course of antibiotics and on the 5th day it was like a lightswitch, instantly nauseous and epigastric pain that is relentless, radiating into my midback and right shoulder blade. I have had so many test in the past 4 motnhs I dont know where to begin including 2 trips to Mayo clinic. In a nutshell, biopsied positive for celiac and have positive enzymes, have been gluten free for 3 months with absolutely no improvement whatsoever in symptoms, was recenlty aslo diagnosed with small bowel bacterial overgrowth, and am now on antibiotics for this, still no improvement, so much of my pain is into my back they are even considering taking out my gallbladder just to see if it helps as I do have some polyps in it. The pain is debilitating, constant 24/7 even when I sleep. Very depressed, even recently with last biopsy and labs my celiac labs returned to normal, but I am still in pain. They told me they rarely see pain like this from celiac dz, who knows, if mine is from that I am not sure why it is not improving??? I feel for you and understand what you are going through, it sucksssss so bad it is ruining my life.
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#6 GFinDC

 
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Posted 27 November 2011 - 09:08 AM

Hi Brookvale,

Yes celiac can cause pain. You can also get pain from complications, like gastritis or gall bladder issues, which are fairly commonly reported here.

One thing that might be hurting you is the acid blockers. Stomach acid is very important in sanitizing the food we eat. Without adequate stomach acid it is easier for nasty bacteria to colonize your gut and stomach. You have probably been tested for h.pylori right?

You should take pro-biotics if you are on anti-bitotics. Killing off all the bacterias means you have to rebuild your gut flora, and you want to be sure to rebuild with a good starter culture.

It might help to simplify your diet for a while too. Cut out all processed foods and cook every thing from scratch. Avoid soda and spicy foods, soy and dairy. When our GI system is irritated it can react to all kinds of foods, so a simple diet can help. That would include not eating any processed gluten free foods at least for a few weeks.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 brookevale

 
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Posted 27 November 2011 - 10:41 AM

Thank you everyone. I have been taking probiotics and florastor since I started getting ill. I will let everyone know what the doctor recommends tomorrow. He has said he may want to go in with a laproscope to explore. I'd like to get an ERCP first to check the ducts and get a second biopsy for the celiac. I just want to feel better soon!
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~Brooke
After 14 years of pain in my right side and a year of vomiting, severe abdominal pain, starvation, feeding tubes, doctors telling me it's in my head, negative tests, I FINALLY was diagnosed with Sphincter of Oddi Dysfunction August 2012.
Never Never Never Give Up!
Believe in yourself when you know beyond a shadow of a doubt you have a condition that has not been diagnosed--it's NOT in your head.
I came up positive for the celiac genetic marker in 2011, but negative for sprue and blood antibodies in 2011 and 2012.
One doctor says I have celiac, another says I don't. Huh?

#8 brookevale

 
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Posted 23 June 2012 - 05:14 AM

Hi Everyone,

Sorry I haven't posted in a while. I will start off by reporting out that the abdominal pain I was having that started this post goes away if I take prescribed pancreatic enzymes. Chronic pancreatitis has been ruled out, but there is something going on with my pancreatic duct. So, the pain I was having under my sternum was related to that and not celiac. I have been through hell since my last post. I am still gluten free, but it is apparent my GI problems go way beyond celiac disease. I am now with Albany Med's GI group. They don't think I have celiac, just the genetic marker. I am starting to agree with them as my symptoms never change regardless if I "slip" and eat gluten. My weight plummeted to 95 lbs in May and I had lost almost all of my muscle mass. I was mentally incapable of working anymore and felt like the walking dead. I went out to the University of Minnesota to see Dr. Martin Freeman, a nationally-recognized pancreatic/biliary specialist. He was going to do an ERCP, but couldn't in good conscience due to the risks and how emaciated I became. He couldn't believe I was allowed to get this bad. Long story short, he ended up doing an endoscopic ultrasound and there were findings with my bile and pancreatic ducts (Albany Gastroenterology did an EUS and found nothing--figures). Dr. Freeman wrote up a recommendation that I get a G/J feeding tube immediately when I get home. It took me two and a half weeks to find a doctor who would agree to this! Unbelievable how we can be left to suffer and nearly die. The feedings and formula haven't been a perfect process, but I am happy to say I am up to 106 lbs, don't look like a white zombie, and can function physically and mentally. I still eat a little during the day, but not much as eating still causes me extreme fatigue and nausea. I am headed back to Minnesota to see Dr. Freeman in August for an MRCP w/Secretin and an ERCP with sphincter of oddi manometry test. Even if I DO have celiac, there is no way I would be THIS sick for THIS long! Plus, it has now been confirmed something is definitely going on with my ducts. This has been a nightmare that started Labor Day 2011. I am truly living a Mystery Diagnosis episode. But, thankfully, I have an expert now, though halfway across the country, who is determined to figure out what is wrong with me.
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~Brooke
After 14 years of pain in my right side and a year of vomiting, severe abdominal pain, starvation, feeding tubes, doctors telling me it's in my head, negative tests, I FINALLY was diagnosed with Sphincter of Oddi Dysfunction August 2012.
Never Never Never Give Up!
Believe in yourself when you know beyond a shadow of a doubt you have a condition that has not been diagnosed--it's NOT in your head.
I came up positive for the celiac genetic marker in 2011, but negative for sprue and blood antibodies in 2011 and 2012.
One doctor says I have celiac, another says I don't. Huh?

#9 IrishHeart

 
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Posted 23 June 2012 - 05:38 AM

So sorry you are going through all this. I can relate. I was so ill, emaciated and I lost major muscle mass. For 3 years, we called what was happening to me a "mystery" too. It was malabsorption from celiac and all the complications that arose from going unDxed for so long.

If you find you are not getting what you need from the Albany Med group (and I have heard nothing good about them, sorry), I can highly recommend Dr. William Gusten at Schenectady-Saratoga Gastro. Very celiac-savvy and leaves no stone unturned with follow-up care.

He checked me for Crohn's, Inflammatory Bowel diseases, lymphoma, etc.



Do NOT go to Upstate Gastro. They left me unDxed for 12 years and nearly cost me my life.

I have to to be rather frank with you here--If you have a positive celiac blood test, you have celiac ! You should never "slip" and eat gluten. This continual reintroduction of gluten into your system is restarting the inflammatory process over and over again and I suspect that is not helping the situation.

Yes, you can very well still be "this sick for this long" as a result.
Malabsorption syndrome is complex and multi-faceted and those bile and pancreatic ducts can be greatly affected from celiac or any other GI tract problem for that matter.

I am glad you have someone to help you, but I wonder if you really need to travel that far for those tests to be done?

Just trying to spare you all the trips.
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#10 GFinDC

 
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Posted 23 June 2012 - 08:24 AM

Hi Brookvale,

I am sorry you are having health issues still. One thing to remember is that people can have more than one health issue going on at the same time. So, just because the doctor says there is a pancreatic duct issue doesn't mean celiac has gone away. You did say in your original post that you had symptoms improve after going gluten-free right? And you had positive blood tests? Even without an endoscopy, the blood tests are not positive for no reason. If your body is making antibodies to gluten and you continue to eat it you are hurting yourself.

Celiac can cause pain, and lots of pain too. And it can affect any part of the body, not just the gut. The antibodies they detected in your blood are circulating through your body after all. And ml-nutrition affects every part of the body also.

If you search this forum for "gall bladder" you will find lots of threads by people who had their gall bladder removed.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 lcarter

 
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Posted 23 June 2012 - 11:14 AM

Have they checked you for Crohn's - Inflammatory Bowel Disease which can affect your digestive tract anywhere from the mouth to the anus? Pancreatic problems can be a side feature of this disease. An endoscopy [through the mouth into the small intestines] can only go so far into the small intestine. Sometimes, a Pill-cam [pill + camera that is swallowed and is recorded as it travels throughout the intestinal tract by a belt you wear for a day or two] is the only way to see all of the small intestine. Sever pain like you have been having is NOT a part of Celiac. However, you could also have celiac disease or gluten intolerance along with another digestive disorder. I sure wish you luck in getting a diagnosis real soon so you can start getting well! Congratulations on the new baby!!!!
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Gluten + Dairy + Fructose Intolerant, Osteoporosis, Hasi's/ Hypothyroid, Sjogren's, Migraine Deviate with Visual Aura, Peripheral Neuropathy, DQ2 and DQ8 negative [Prometheus Labs]

#12 brookevale

 
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Posted 10 February 2013 - 11:53 AM

Hi Everyone,

I hope this message finds you all doing well. Sorry I haven't posted in a while. I am replying to this post rather late as I have been getting some resolution to my 17 month long quest for answers. Back in October 2011, I tested positive for the celiac genetic marker, but negative for the antibodies and sprue. So, GI doctor says I don't have celiac. I went gluten free for nearly a year while I was very ill. It never made a difference for how I felt because I always felt like crap. I started eating gluten again back in August. I still have negative celiac blood tests. Not sure what to do/think. But, I do know beyond a shadow of a doubt that I have casein intolerance. I don't know what to think: do I have celiac or not??? But, really, I wanted to provide an update of how I was finally diagnosed, though it took a year! The last time I posted I was still searching for a diagnosis and was starving to do death, but had gotten feeding tubes. The tube became a whole other set of issues. The j tube part that was supposed to stay in the small intestine kept migrating into my duodenum and stomach. I had to be hospitalized to have it replaced five times in two months. Also, none of the formulas agreed with me.It took two months of insisting to docs the headaches were the result of the formula and could be the casein. Once they finally changed to a casein-free formula, no more headaches! By August I was able to get up to 109 pounds and flew back to Minnesota to have the ERCP test. I was FINALLY diagnosed with Sphincter of Oddi Dysfunction (SOD)! After a year of searching, I finally found my problem. The Minnesota doctor also performed sphincterotomies (cutting) of my pancreatic and biliary sphincters. Unfortunately I was one of the unlucky few who ended up with acute pancreatitis after the ERCP procedure. I also developed an e-coli blood infection and came very close to dying, ending up in ICU. After a week, I went home only to end up back in the hospital for nearly a week waiting to have my feeding tube replaced again because it had kinked. I found some relief for a good four-six weeks. Then I was hospitalized and had to have my temporary stents removed. Immediately, I returned to my original symptoms. While in that hospital, I met a surgeon who suggested a more permanent solution--a transduodenal sphincteroplasty, where the pancreatic and biliary sphincters are permanently sewed open to the duodenum. On October 3, 2012, I had open abdominal surgery for the sphincteroplasty. I ended up with a life-threatening infection, nearly dying again, and other issues. I was in the hospital for 4 weeks.

It is February 10, 2013. I have been able to maintain my weight on my own--first time in 17 months and three weeks ago had the feeding tubes removed. My nausea is manageable. I don't vomit anymore or feel like I have a massive hangover every day I wake up. Also, my abdominal pain has been manageable. I don't need to take as many prescription pancreatic enzymes anymore, but still get some pancreatic discomfort and pain. The severe fatigue and brain fog after eating has improved as well. My biggest problem is that I have developed nerve, muscle, and joint pain two months ago that I never had before the surgery. It is worse after I eat and when I wake up--especially after eating even miniscule amounts of casein protein and some other proteins and sugars. I see a neurologist next week. I started eating gluten again in August, which I think I need to stop doing.
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~Brooke
After 14 years of pain in my right side and a year of vomiting, severe abdominal pain, starvation, feeding tubes, doctors telling me it's in my head, negative tests, I FINALLY was diagnosed with Sphincter of Oddi Dysfunction August 2012.
Never Never Never Give Up!
Believe in yourself when you know beyond a shadow of a doubt you have a condition that has not been diagnosed--it's NOT in your head.
I came up positive for the celiac genetic marker in 2011, but negative for sprue and blood antibodies in 2011 and 2012.
One doctor says I have celiac, another says I don't. Huh?

#13 mushroom

 
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Posted 10 February 2013 - 12:54 PM

I am so sory to hear you have been having such horrendous health problems. At last you finally have some diagnoses and treatment which seems to be working. :) Something popped out at me from today's post that made me check your first post:

This from today's post:

Back in October 2011, I tested positive for the celiac genetic marker, but negative for the antibodies and sprue. So, GI doctor says I don't have celiac.


This from your first post:

Long story short, I came up positive for celiac in my blood tests

There was some discussion at that time about the significance of positive bloods and negative biopsy. That discussion still applies. I do agree with you that you need to be strictly gluten and casein free and see if you can't now get all this under control, having had the surgical correction necessary. :)
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Neroli


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