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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

If You Were Me, What Would You Do?
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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?

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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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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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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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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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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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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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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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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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