Gerd Vs. Celiac

[Duhlina]

I have to call later today for my biopsy results, but based on his visual expertise during the endoscopy he told my husband I do NOT have celiac and he guarantees I have GERD. He says he sees it all the time and will be prescribing me omeprazole to take every day. I don't have any SYMPTOMS of GERD though! Sure, once in a while I might be heartburn, but it's VERY rare. I read through the list of symptoms and maybe 1 out of 10 apply. With celiac 9 out of 10 symptoms apply.

I just don't get it.

Has anyone else been diagnosed with GERD instead of Celiac?

[ravenwoodglass]

I hope your GI took lots of biopsies. The reason they do biopsies is because at times the damage can not be seen except under a microscope as villi are very tiny. It isn't unusual for us to have GERD while on gluten as problems with gluten can cause inflammation problems. Now is when you give the diet a good strict try. You don't have to wait for the biopsy report as long as that was the end of your celiac related testing. What were your blood test results? If those were positive you need the diet. False negatives are also possible on both blood and biopsy so a good strict trial of the diet is the best way to know if the diet will help your issues.

[Duhlina]

What were your blood test results? If those were positive you need the diet. False negatives are also possible on both blood and biopsy so a good strict trial of the diet is the best way to know if the diet will help your issues.

My blood tests were a "low positive". In other words the cut off to be positive for Celiac was like an 8 and I tested a 7. The gastro says I didn't test an 8, so I don't have it.

I don't know how many biopsies he did. I'm getting ready to call and see what the results were and will ask when I speak with them.

[GlutenFreeManna]

My blood tests were a "low positive". In other words the cut off to be positive for Celiac was like an 8 and I tested a 7. The gastro says I didn't test an 8, so I don't have it.

I don't know how many biopsies he did. I'm getting ready to call and see what the results were and will ask when I speak with them.

You should get a copy of all your test results to see them for yourself and maybe even take them to a new GI doctor. Hopefully your current dr will accurately review the biosy results, but get your own copies just in case. It's very presumptious of him to say you can't have celiac when he hasn't even looked at the results yet! Celiac damamge cannot be seen by the eye during and endoscopy--it is only seen under a microscope.

[Skylark]

Sheesh. Just try going off gluten before you go on a PPI drug. You've had the testing done so there is no harm in trying the diet. If you're gluten intolerant you will have normal celiac tests anyway. Omeprazole really messed up one of my family members and it turned out she is gluten intolerant and allergic to garlic.

[Gemini]

I have to call later today for my biopsy results, but based on his visual expertise during the endoscopy he told my husband I do NOT have celiac and he guarantees I have GERD. He says he sees it all the time and will be prescribing me omeprazole to take every day. I don't have any SYMPTOMS of GERD though! Sure, once in a while I might be heartburn, but it's VERY rare. I read through the list of symptoms and maybe 1 out of 10 apply. With celiac 9 out of 10 symptoms apply.

I just don't get it.

Has anyone else been diagnosed with GERD instead of Celiac?

GERD is not a diagnosis...it's a symptom of an underlying condition. Acid reflux just doesn't happen by itself and it usually means you are eating something which is not agreeing with you...like gluten perhaps?

This is what happens when you go to a doctor who symptom treats. That in itself is epidemic in this country.

Try the gluten-free diet and see what happens. Don't listen to your GI. He's as clueless as the rest of them.

[AVR1962]

Your bewilderment as far as being told you had GERD was my own thoughts several months ago. I had never had acid reflux issues, like you occasional heartburn. The GERD was definately connected to the celiac for me. Doc gave me a prescript to take once a day but my stomach was so bad I ened up taking 2 and 2 doses of Pepto in between. I went off dairy as dairy can tear up your system and I had to heal. I also went on a low acid diet, one to help heal and the other to help replace my bone loss.

If you plan to pursue a diagnosis for celiac I think you need a second opinion. If you plan to go this alone for now and see what happens I would definately recommend going to a strictly gluten-free diet for a couple months and eliminating all acid foods and dairy until your stomach heals. For me, as my stomach felt better I backed off on the meds, it took me 5 months to get to the point where I was completely off the prescript.

[UKGail]

I had peptic ulcer issues on and off for 25 years, from my first brush with "mono" as a student. I spent several months on omeprazole earlier this year, together with anti-immflammatories, and eventually weaned myself off both during the summer as I felt my body had had enough medication. Shortly afterwards I received the celiac diagnosis on the basis of symptoms only and went gluten free. Although it is early days, I have had no more than the very occasional twinge of heartburn since then, and my stomach feels much, much better. I had a negative biopsy 2 years ago, with the gastro saying there was considerable scarring of the stomach and esophagus, and a haitus hernia, but no celiac. I am doing much better on the gluten free diet in too many ways for me to be anything other than celiac or gluten intolerant.

I agree with AVR that you should try going gluten free for a while to test out your reactions.

[mommida]

There is a condition, Eosinophilic Esophagitus that gives the same symptoms as glutening to a celiac. Gluten can even be the "trigger" for eosinophils to wreak havoc for 12 days. It is possible to have both celiac and EE. An endoscopy with biopsy is needed for both diagnoses and "normal" looking tissue needs to be sampled as eosinophils may be imbedded in the tissue.

If you have already had an elevated blood test, the endoscopy is done you can try the next scientific test. The gluten free diet with a food journal. The journal is also your mood check and BM's. It can help find hidden gluten and other food sensitivities.

[Debbie B in MD]

It could be non-celiac gluten intolerance. Wheat can give you heartburn. I agree with others. Try it, gluten-free that is. You just might like what it does for you.

[BabsV]

OMG! I had doctors telling me for 6 months that I had GERD and treating me with all sorts of PPIs and other meds that made me dizzy and gave me insomnia. I finally ran everything by a new doctor who threw out the blood tests as "tests of exclusion" -- he TOLD me they'd be negative but he thought they should be done to 'prove' it wasn't a gluten issue. Imagine his surprise when they came back positive!

When I was scoped the doctor said my esophagus and stomach were pink and healthy but my small intestine gave the appearance of Celiac damage so I didn't have to wait for biopsy results but was to start the gluten-free diet immediately.

The previous doctor had *NO* practical experience with Celiac Disease but was very familiar with GERD. I think she saw what was familiar.

Try going gluten free. It has made a world of difference for me in only 8 weeks.

[Duhlina]

OMG! I had doctors telling me for 6 months that I had GERD

Well, I just got off the phone with the gastro's secretary. Guess what? My biopsy results are back and I DOOOOOO have celiac! My husband even ARGUED with me after I got off the phone saying the doctor specifically told him I did NOT have celiac while he was doing the endoscopy. So what? The biopsy LIED? OY VAY! She said he wants me to go gluten free and they want to send me for more blood tests.

What other blood tests can they send me for? I was SO hoping she was going to say the biopsy was negative. I'm really going to miss my Punkin' Ale. <sigh>

[Roda]

Definately the GERD can be a symptom of celiac. It was my main GI complaint and was relieved by going gluten free without meds. A little over a year after I went gluten free I started having bad GERD symptoms again. I had another scope and I had developed a peptic ulcer (I didn't have any ulcers on my initial scope). I did go on zantac to help heal the ulcer but quit taking it long before they wanted me too. I also changed some things in my diet and that helped. I feel I was getting symptoms and developed the ulcer because of gluten free oat contamination in gluten free products. I react just as bad to oats and I do gluten.

As for other blood tests you should have all your vitamins and minerals checked. Celiac's tend to be deficient in many because of the malabsorption due to the damaged villi. You may also want to get a bone mineral density test too as a baseline.

I hate it when the doctors come out from the scope and say that everything looks fine. They all to well know you have to wait on the biopsy results to tell if there is villi damage. Unless the lining of the small intestine is VERY bad, they can't visually tell if you have celiac. I only know of one person that had very bad visual damage to their small bowel. He was having a scope not to look for celiac either. The doctor thought it looked abnormal and took samples (small bowel biopsies are not part of a routine scope a lot of the time and it should be) since he was there. It came back as celiac and the highest on the marsh scale!! This poor man, almost his entire life, suffered from debilitating diarrhea and other GI symptoms and noone could figure it out. After his scope they sent him for blood work. It was through the roof positive. He was around 65 when he was diagnosed. His wife and I figure he has had celiac the better part of his life. He missed out on so many things with his family. However, now he is doing wonderful and enjoying his new found health since going gluten free.

[GlutenFreeManna]

Well, I just got off the phone with the gastro's secretary. Guess what? My biopsy results are back and I DOOOOOO have celiac! My husband even ARGUED with me after I got off the phone saying the doctor specifically told him I did NOT have celiac while he was doing the endoscopy. So what? The biopsy LIED? OY VAY! She said he wants me to go gluten free and they want to send me for more blood tests.

What other blood tests can they send me for? I was SO hoping she was going to say the biopsy was negative. I'm really going to miss my Punkin' Ale. <sigh>

Sounds like your husband had some wishful thinking and maybe even minterpreted what your doctor said when your dr said everything "looked fine". Time to take your husband to the next dr's appointment where you ask your dr to go over the POSITIVE biopsy results and what they mean (that you need a strict gluten-free diet for life). This may be the only way to get you husband on board to help you stay gluten-free (as soon as your tests are done of course).

[beebs]

I had GERD as a symptom as well...Maybe tell your husband that it is a good thing you don't have it..20% of GERD suffers end up with pre cancerous cells in their esophagus

[The Horticulturalist]

My blood tests were a "low positive". In other words the cut off to be positive for Celiac was like an 8 and I tested a 7. The gastro says I didn't test an 8, so I don't have it.

I don't know how many biopsies he did. I'm getting ready to call and see what the results were and will ask when I speak with them.

My son (7) had a weak positive about 6 weeks ago on the Ttg, it was repeated along with the EMA (which was +ve) a couple of weeks ago and it was positive this time, so don't let them fob you off with that one. You may not have celiac, but you could have it.

I recently went in to my Drs office and asked for copies of the biopsy results that I had a year ago and the doctors report from the colonoscopy. That was an enlightening experience because he did not mention celiac at all on the report or suggest it as a possibility to the pathologist, he also did not take any small bowel biopsies, only large bowel biopsies. I am now gluten free and so can't be tested, but I was told at the time I didn't have celiac so I went gluten free anyway, I didn't have enough knowledge at the time to realise that he should have taken small bowel biopsies and that the ideal test would really ought to have been an endoscopy.

So, if I were you I'd absolutely get copies of the tests. I would also consider seeing someone else if you feel that he has not been thorough before you start the gluten-free diet if you think you might repeat the test. The Open Original Shared Linkwill review your labs and test results for you I think if you fax email them,they looked at my sons labs recently for me and had their senior Dr review them.

[AVR1962]

Well, I just got off the phone with the gastro's secretary. Guess what? My biopsy results are back and I DOOOOOO have celiac! My husband even ARGUED with me after I got off the phone saying the doctor specifically told him I did NOT have celiac while he was doing the endoscopy. So what? The biopsy LIED? OY VAY! She said he wants me to go gluten free and they want to send me for more blood tests.

What other blood tests can they send me for? I was SO hoping she was going to say the biopsy was negative. I'm really going to miss my Punkin' Ale. <sigh>

Congrats on the diagnosis! There is so much associated with celiac and he probably wants to see where your vitamin counts and antibodies, all of that are at. My doc had me do a test for diabetes after I was diagnosed. Good thing is you are on the right track. Are you taking anything for the GERD. One thing I can say to keep in mind is do what it takes to heal your system. GERD really tears your stomach up.

[The Horticulturalist]

Congrats on the diagnosis! There is so much associated with celiac and he probably wants to see where your vitamin counts and antibodies, all of that are at. My doc had me do a test for diabetes after I was diagnosed. Good thing is you are on the right track. Are you taking anything for the GERD. One thing I can say to keep in mind is do what it takes to heal your system. GERD really tears your stomach up.

Duhlina,

I missed that you got your test results back before I posted, glad that you have a definitive answer and can start to feel better. Consider cutting out or reducing your dairy if you continue to have symptoms, it can cause problems for many celiacs, especially in the first year.

I would ask them to test your Vit D levels, it seems that a high percentage of the general population is low for this anyway, but I think you'll feel better if you can get it up a bit. I got Bio-D-Mulsion Forte liquid VitD form Amazon as the tablets were huge and I had trouble swallowing them, this is just a tiny drop a day and it raised my levels from 26 - 36 which I think is just at the lower end of normal now. I'd also ask for B12 and ask them to check your iron levels, I just read this on the UofC Celiac Facebook page:

"The most common sign of celiac disease in adults is iron deficiency anemia that does not respond to iron therapy."

I didn't know that until yesterday, so I'd definitely add that blood test to the list.

[Duhlina]

I would ask them to test your Vit D levels, it seems that a high percentage of the general population is low for this anyway

Well now I'm kind of confused.

My blood test showed a low positive. The biopsy came back positive for Celiac. The blood test they want to send me for is this:

PROMETHEUS

[GlutenFreeManna]

Well now I'm kind of confused.

My blood test showed a low positive. The biopsy came back positive for Celiac. The blood test they want to send me for is this:

PROMETHEUS

[The Horticulturalist]

Well now I'm kind of confused.

My blood test showed a low positive. The biopsy came back positive for Celiac. The blood test they want to send me for is this:

PROMETHEUS

[ravenwoodglass]

My blood test showed a low positive. The biopsy came back positive for Celiac.

I would tell them thanks but no thanks unless they want to pay for it and do it for research purposes. Do not let them talk you out of the diet if you do have the test done but don't have the genes.

[Roda]

I agree, it really is pointless to do the genetic test. You have a diagnosis! What more are they trying to prove? My boys or I have not had the genetic tests, and unless I have it done privately, I'm not going to either.

[mommida]

You do not need to have the genetic test done. You have a positive biopsy result. Start the diet, so you can heal.

You would only be tested for the "known" to be associated with Celiac genes. There is also an admitted 2% MISS rate. Insurance may not cover all the expense of the test.