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If You Were Me, What Would You Do?


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#1 mamarie

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Posted 11 June 2010 - 04:46 PM

I finally got hold of my blood tests and have a clearer picture. My celiac panel was negative. The DQ2 test was positive. My endoscopy results were negative for celiac but showed I had GERD and also the doctor suspects bacteria in small intestine (just did breath test for this awaiting results).

My other issues are joint pain, stomach pain immediately (10 minutes) after eating, gas, bloating, sometimes floaty diarreah. I have restless leg syndrome and hypoglycemia.

I've listed these things on here before in previous posts, but I was under the impression before that I tested postive for gluten sensitivity. Now I realize I only tested positive for the carrying the DQ2 gene. I'm suspecting this changes things right?

So, with all this info, what would you do? My gastro dr. thinks going gluten free is unnecessary since my blood tests were negative. He wants to put me on Nexium for GERD and have me take probiotics.

If you were me, based on the above info, would you go gluten free? Or am I taking this too far?
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#2 mushroom

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Posted 11 June 2010 - 05:14 PM

Since all your testing is complete, I would give the gluten free diet a strict three-month trial.

Most doctors are under the impression that if you do not test positive for celiac disease, gluten will not harm you. They are wrong and misinformed. Non-celiac gluten intolerance can be just as damaging to the body as celiac disease. You have nothing to lose but your ill-health by giving the gluten free diet a trial. If you also have SIBO you will have to treat that as well. Let us know how the tests turn out.
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Lactose free 1990
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Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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#3 GlutenFreeManna

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Posted 11 June 2010 - 06:09 PM

I finally got hold of my blood tests and have a clearer picture. My celiac panel was negative. The DQ2 test was positive. My endoscopy results were negative for celiac but showed I had GERD and also the doctor suspects bacteria in small intestine (just did breath test for this awaiting results).

My other issues are joint pain, stomach pain immediately (10 minutes) after eating, gas, bloating, sometimes floaty diarreah. I have restless leg syndrome and hypoglycemia.

I've listed these things on here before in previous posts, but I was under the impression before that I tested postive for gluten sensitivity. Now I realize I only tested positive for the carrying the DQ2 gene. I'm suspecting this changes things right?

So, with all this info, what would you do? My gastro dr. thinks going gluten free is unnecessary since my blood tests were negative. He wants to put me on Nexium for GERD and have me take probiotics.

If you were me, based on the above info, would you go gluten free? Or am I taking this too far?


I would try the diet for at least a month and see how you feel then. There is a high rate of false negatives with the blood test. Also, I have read if the endoscopy did not take samples from the right place you could get a negative that way too. Did they do a biopsy at all or did they just inspect the tissue? GERD is diagnosed by just looking at the stomach, esphogus and the beginning of the small intestines. From what I understand, If the tissues appear inflamed they can diagnose GERD--which is basically heartburn and acid reflux. The thing is, this diagnosis does not tell you WHY you have GERD. I suspect many celiacs or gluten-intolerant individuals had GERD as well before going gluten free. I used to get a tightness in my chest and cough from acid reflux (in addition to the gas, belching and bloating). Since giving up gluten and most dairy I don't have that problem any more. Probiotics will not hurt you, and you may very well have an overgrowth of bad bacteria, so I would follow the doctors advice on that, but just make sure the probiotics you take are gluten free. I would hold off on the GERD meds until you test the diet out. Trust me you will know if gluten is the problem really quickly. Try gluten free for a month and then test your body to see how it reacts when you eat a little gluten. You may just be gluten sensitive and not celiac, but you will still notice a big difference if gluten is your problem. Good Luck!
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#4 mamarie

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Posted 11 June 2010 - 06:27 PM

I would hold off on the GERD meds until you test the diet out. Trust me you will know if gluten is the problem really quickly.




So you wouldn't take the Nexium the dr. prescribed? You would try gluten free for a while and see if the acid reflux clears up?

Yes, they did do a biopsy after the endoscopy and it was negative for celiac.

I have been gluten free for three days and it's possible it's just my imagination but I can tell a difference. I have had no stomach pain or bloating for three days. I'm still having joint pain though. I'm vitamin d deficient too though, so it might have something to do with that since I'm sure it will take a while to increase my levels (I'm taking 5000 iu's of D3 a day).

I appreciate the responses. Please let me know if I shouldn't be taking the Nexium pills.
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#5 lucia

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Posted 11 June 2010 - 08:17 PM

My stomach pain and cramps cleared up after 5 days, but I still have neurological symptoms including joint pain after 2 and 1/2 months. Seems like the neurological stuff takes longer to clear up. The real litmus test appears to be the GI symptoms. From what you said, it sounds like you've already had a response with those from the gluten-free diet.

I had an endoscopy prior to going gluten-free which showed gastritis. That means that my stomach was oozing blood. I went on the gluten-free diet, and I never filled the prescription I was given for the gastritis because the pain went away on its own. I didn't need the drugs.

Btw ... I tested negative on the blood work and the endoscopic biopsy too, but I've gotten really sick again every time I've accidentally eaten gluten in the past 2 and 1/2 months. That's enough of a test for me.
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#6 burdee

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Posted 11 June 2010 - 08:33 PM

So you wouldn't take the Nexium the dr. prescribed? You would try gluten free for a while and see if the acid reflux clears up?

Yes, they did do a biopsy after the endoscopy and it was negative for celiac.

I have been gluten free for three days and it's possible it's just my imagination but I can tell a difference. I have had no stomach pain or bloating for three days. I'm still having joint pain though. I'm vitamin d deficient too though, so it might have something to do with that since I'm sure it will take a while to increase my levels (I'm taking 5000 iu's of D3 a day).

I appreciate the responses. Please let me know if I shouldn't be taking the Nexium pills.


DO NOT TAKE THE NEXIUM PILLS!!! If your bloating and stomach pain disappeared after only 3 days gluten free, gluten probably caused your digestive problems. Even if Nexium relieves heartburn (by suppressing stomach acid), it will make digestion more difficult in the long run. We NEED stomach acid to adequately digest proteins and biochemically trigger bile production to digest fats. Reflux is NOT caused by too much stomach acid. (Did your doc measure your stomach acid before prescribing Nexium?) Reflux is caused by the lower esophageal valve (LEV) opening inappropriately. Food allergies, gluten intolerance, certain drugs, caffeine, alcohol, smoking, onions and even peppermint can all relax the LEV and allow reflux. Avoiding gluten may be all you need to prevent reflux. If not, consider other food allergeis or the other LEV relaxers I mentioned. If your doc insists you take Nexium, ask him to first measure your stomach acid levels to verify that you have too much. (Most docs never do so.)

One of my misdiagnoses for celiac disease was 'gastritis'. So I was prescribed Zantac and then Tagamet years ago. I took those for almost 5 years as well as Maalox and Mylanta, because I valued my doc's advice. However I stopped taking those drugs before I was diagnosed with celiac disease and 6 other food allergies. Nevertheless, I'm still paying for 5 years of taking acid blocking drugs. I have all the symptoms of low stomach acid. Furthermore I've contracted 8 different gastrointestinal 'bugs' (5 bacteria, 2 parasites and candida) during the past 4 years. People with normal levels of stomach acid never develop those 'bacterial overgrowths' or parasitic infections, because their stomach acid kills those bugs before they reach the low acid (actually basic) environment of the small intestines. However, people with low stomach acid can easily contract those gut bugs from foods, water, etc.

SUE
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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.


#7 ravenwoodglass

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Posted 12 June 2010 - 03:58 AM

So you wouldn't take the Nexium the dr. prescribed? You would try gluten free for a while and see if the acid reflux clears up?

Yes, they did do a biopsy after the endoscopy and it was negative for celiac.

I have been gluten free for three days and it's possible it's just my imagination but I can tell a difference. I have had no stomach pain or bloating for three days. I'm still having joint pain though. I'm vitamin d deficient too though, so it might have something to do with that since I'm sure it will take a while to increase my levels (I'm taking 5000 iu's of D3 a day).

I appreciate the responses. Please let me know if I shouldn't be taking the Nexium pills.


Since you are doing well on the diet no I wouldn't start the Nexium. There are a lot of us who have gastritis show up on the endoscopy, especially when we have scopes done from both ends and have done a challenge and cleanout.
My DD's primary symptoms were GERD and I was told I had this also. I chose not to take the pills and like you was feeling better really quickly. It take a bit more time for the joint pain to resolve but resolve it did. It only appears again now when I am glutened.
False negatives on blood and biopsy are all to common, unfortunately. Your body is clearly telling you the diet is the right thing to do.
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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)

#8 bluebonnet

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Posted 12 June 2010 - 04:27 AM

you will feel so much better everywhere not just your digestive tract by eliminating gluten. nexium is tough on the liver and apparently in the news lately for bone loss. to me, one of the blessings of this disease is that you can heal without harmful drugs. and you are deficient in vit d so that is another problem that nexium will not heal but staying away from gluten can take care of that. i have severe joint pain, deficient in d along with the digestive issues and neuro ... nexium or prilosec will not heal those. you've got an obvious intolerance so give the gluten free diet a trial run! probiotics can definitely help with digestive problems and they are not harmful. good luck. :)
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