Well hello everyone, I hope all is well. Let me start off by saying I'm not just confused but also very aggrivated by my situation. So I will you in. About 6 years ago I started having horrible stomach pain, numerous trips to the restroom, nausea(with occasional vomiting), and general lethargy. All of this appeared out of nowhere. The doc suggested biopsies, endoscopies and the lovely cup test. Well he found absolutely nothing and ruled it as IBS. Needless to say I was confused and angry that all this was happening. Well fast forward to roday, I have discovered through experimentation that I am lactose intolerant. I tried everything to stop symptoms of this nonsense. I tried medication, didst change and exercise(well you never know haha) but nothing is working. A coworkers suggested I go gluten free and see what happens. Well dive days in and I feel great. Most of my stomach pain is gone, I have made less trips to the bathroom and I'm not really nauseous. So could this be ncgs since I tested negative for celiac?
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4 replies to this topic
#2
GottaSki
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"Migratory flight complete."
Posted 08 January 2013 - 06:05 AM
Welcome!
I love your screenname - I often refer to certain periods of my life as Zombie Days.
When was the last time you were tested for celiac disease?
Were all the antibody tests run - many docs run only one or two of the complete panel.
Have you had nutrient blood tests? These can indicate the malabsorption found in celiac disease.
Lastly, when you had the endoscopy did the doc take multiple samples from the small intestine?
If you aren't sure of the answers to these questions - request written copies of all tests - including the pathology reports from endoscopies.
If you have been properly tested for Celiac Disease than removing all gluten for three months (six is better) is the next best step.
CAUTION - you need to be ingesting gluten for tests to have their best chance for accuracy - if you think you may need more testing - keep eating gluten - no need to overdo - a slice or two of gluten containing bread per day seems to be sufficient.
Good Luck to you
I love your screenname - I often refer to certain periods of my life as Zombie Days.
When was the last time you were tested for celiac disease?
Were all the antibody tests run - many docs run only one or two of the complete panel.
Have you had nutrient blood tests? These can indicate the malabsorption found in celiac disease.
Lastly, when you had the endoscopy did the doc take multiple samples from the small intestine?
If you aren't sure of the answers to these questions - request written copies of all tests - including the pathology reports from endoscopies.
If you have been properly tested for Celiac Disease than removing all gluten for three months (six is better) is the next best step.
CAUTION - you need to be ingesting gluten for tests to have their best chance for accuracy - if you think you may need more testing - keep eating gluten - no need to overdo - a slice or two of gluten containing bread per day seems to be sufficient.
Good Luck to you
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#3
GFinDC
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A little farting never hurt anybody... :-).
Posted 08 January 2013 - 06:12 AM
Hi,
Yes, it could be. They don't have any test protocol for NCGS at the moment. You are still pretty early in the gluten-free diet though. Did they do all the antibody tests, or just part of them? It is fairly common for them to only do a couple of the tests and leave others out.
http://Non-celiac wh...ists/Page1.html
Yes, it could be. They don't have any test protocol for NCGS at the moment. You are still pretty early in the gluten-free diet though. Did they do all the antibody tests, or just part of them? It is fairly common for them to only do a couple of the tests and leave others out.
http://Non-celiac wh...ists/Page1.html
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
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
#4
running like a zombie
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Posted 08 January 2013 - 10:58 AM
I actually have had 2 different celiac tests. 1 for the original doc and then another by my new doc I got when I moved. The first one did multi biopsies and numerous others tests(sadly I can't remember which). The second doc did a celiac test and ultimately decided once again that it was still IBS. I was placed on lomotil(generic for lonox) and told to monitor my diet. I agree that it is very early in the gluten free but I feel considerably better. I have little stomach cramps and throbbing pain throught out the day. I also greatly appreciate the imput.
#5
GFinDC
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A little farting never hurt anybody... :-).
Posted 08 January 2013 - 01:40 PM
Hi RLAZombie,
It's no problem to go gluten-free without a formal diagnosis IMHO. If the tests don't find anything it is still possible to have a problem with gluten. As they say the proof is in the pudding, and if you get better on the gluten-free diet that is good enough proof you shouldn't eat it. I do suggest you write down your symptoms when eating gluten and keep a record of changes since going gluten-free. That might be good info for your doctor to hear. But it also is good info to keep on hand to remind yourself of how you felt before going gluten-free.
And getting your vitamin levels checked is a good idea also. That way you know if there some vitamins low that you need to pay attention to those ones. That's also a good test of success. If you do have low vitamin levels, and they normalize after 6 months to a year on the gluten-free diet, then you know something has changed for the better.
It's no problem to go gluten-free without a formal diagnosis IMHO. If the tests don't find anything it is still possible to have a problem with gluten. As they say the proof is in the pudding, and if you get better on the gluten-free diet that is good enough proof you shouldn't eat it. I do suggest you write down your symptoms when eating gluten and keep a record of changes since going gluten-free. That might be good info for your doctor to hear. But it also is good info to keep on hand to remind yourself of how you felt before going gluten-free.
And getting your vitamin levels checked is a good idea also. That way you know if there some vitamins low that you need to pay attention to those ones. That's also a good test of success. If you do have low vitamin levels, and they normalize after 6 months to a year on the gluten-free diet, then you know something has changed for the better.
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
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
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