Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

If You Were Me, What Would You Do?
0

8 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined