Conflicting Doctor Opinions- Not sure what direction to go

[AllisonG]

39 year old female, very healthy, fit, no other significant medical history.  No smoking, no regular alcohol consumption.  Healthy weight.  Medications: Concerta 36 mg, Singulair as needed,  Ambien  5mg as needed.  Three children.  Busy working Mom, married, no unusual stress.

Diagnosed 11/10 with GERD by an ENT I went to see after 9 years on and off allergy meds prescribed by my then PCP for globus sensation.  Tried every prescription and OTC med for reflux with no change.  Gave up and decided to live with it.

1/12 I went back to ENT because globus sensation had gotten much worse and was having trouble swallowing.  He prescribed Dexilant, the last med option and it too did not work.  I went to my new PCP who sent me for an upper GI series / barium swallow.  The test showed what my PCP described as "profound" reflux.  There was also a small hiatal hernia and obstipation.  No other issues found.

PCP recommended surgery and referred me to a GI surgeon who after I told him no medications worked, said I could not have GERD and that surgery would probably not be the right thing for me.  ALso said that the upper GI was worthless and so was the scope the ENT used to identify the reflux.  (which showed severe swelling and redness)  He scheduled an endoscopy for next week.

I have several other symptoms that I think may be related to the GERD:
Very sour or metallic taste in my mouth.  Had off and on most of my life but only in spots - those spots would turn into ulcers.  In the last 3 months I've had episodes in which my entire mouth would be metallic/ bad tasting and cause nausea.

Severe mouth ulcers since I was a child that are crater like with a center that feels like someone took a razor blade to it.  I always have at least one and often have outbreaks of as many as 20.  They are now starting to appear as a more typical apthous ulcer in the very back of my mouth/start of throat.

Intermittent nausea for the last month

Vertigo twice in the last month, only ever had this once before.  Not sure it is even vertigo- it seems sort of like a dream and things move slowly.  I don't drive then because I react very very slowly.

Full feeling in my chest that seems like the food is stuck.

Gagging coughs

Runny nose that comes and goes quickly - this is new in the last 3-4 weeks

Plugged ears that I've had on and off for years.  Allergy meds do not help this and I can find no relation to food.

Extreme fatigue.  Sometimes I feel great and have a lot of energy, sometimes I walk up a flight of stairs and feel like I just ran up Mount Washington.  Very tired in the afternoon.

Allergy test last year showed Class IV allergy to milk (which I avoid) and Class III to eggs (which I also avoid) and several other Class I and II allergies to what seems like everything under the sun.  Rye, Barley, and Wheat included.

Started a gluten free diet last week but with no changes yet.  Also no dairy, eggs, and limited white sugar.  

What should I do at this point?  Surgeon doesn't think there will be anything on the endoscopy.  So...what is wrong with me?  Any thoughts?

[patient915]

Were you eating gluten when you had the endoscopy done?  Were biopsies taken of your small intestine during the endoscopy?  A pH monitor and an esophageal manometry sound like good ideas.  However, in my opinion, whatever your diagnosis is, you aren't going to be a "typical" case.  I think you should keep in mind that you might not show the "usual" symptoms for something.

[AllisonG]

My endoscopy came back normal.  The next step is a Ph monitor and a (I think I have this right) an esophogeal manometry.  I will have to ask about the motility test as well.  Do you think it would be a benefit to do that instead of in addition to the other 2?  Or wait to see the results of those first?

I have decided not to do the gluten elimination for now.  I am having trouble keeping weight on and in the last week on the gluten free diet I lost another 4 pounds.  

[patient915]

GERD is often very difficult to treat, but it usually responds at least a little to medications that treat GERD.  It is crazy, but sometimes even the more experienced doctors make stupid mistakes.  I went to THE motility specialist in all of California (where I live) and he said he didn't know what I had and he couldn't treat me.  A year later, my current GI (who trained under him) decided to do a gastric emptying scan (a relatively common motility test that he had never done) and it came back very abnormal and that was how I got my diagnosis.

Also, my personal opinion on gluten-elimination diets is that you should eliminate 100% of all gluten from your diet for 2 months to see if it helps, but I do realize that this is a very long time to commit to a difficult diet.

[AllisonG]

I have had some suspicions that it could be gluten, this is why I am doing a gluten free diet.  My plan was to give the diet two weeks - if I am sensitive only I should see at least some improvement, correct?  If I do not then my plan was to request the tests you spoke of as it could then be Celiac's.  Thank you so much for the information, it is very helpful to know what tests to ask for and which make the most sense.  

I wanted to add that as I have been journaling the last few days I noticed that I seem to have more severe upper respiratory symptoms after eating soy.  I have a milk allergy so I substitue with soy milk, yogurt, and a protein shake.  I am wondering if it is typical to experience a combination of GERD and upper respiratory symptoms from a soybean allergy, or would that then mean that I am looking at two completely different issues?

[AllisonG]

Thank you so much for your reply.  I was confused about what he said because I was under the impression that it was somewhat common to have GERD that does not respond to meds.  SO...I will see how the test comes out on Friday.  I want this surgeon to do the surgery if I need it, he has done 6000 of them.  He's head of GI surgery at Dartmouth.  I guess this is supposed to let him off the hook for being a jerk.  ;)  But if the endoscopy comes back finding nothing, I will definitely see someone else.  

[CalGal]

Many of the symptoms you're relating could be related to gluten issues, more specifically celiac disease. Whether or not it is celiac, it's going to take a number of weeks to find out if the diet will be helpful. And you're going to have to make sure you're not ingesting any 'hidden' gluten since it can be found within many pre-prepared items.

You may want to consider an IgA-gliadin test such as the Enterolab stool test. If it comes back positive, make sure your genes (alleles) are checked to find out which genes you're carrying. If they're present they could be passed to your children.

If you do the IgA-gliadin blood test - which isn't always the best - make sure you also do total IgA at the same time. If the total IgA levels are on the low side, but still inside the 'normal' parameters, it could be you're unable to mount an IgA-gliadin response and the result you get back on the IgA-gliadin is actually a false negative. Happens ALL the time. And if the doc wants to only do transglutamine to check for gluten issues, say no. That level doesn't always rise sufficiently to reflect what may be going on with gluten problems.

Many who are diagnosed with GERD-like symptoms find out - finally - the symptoms actually come from gluten problems.

[patient915]

Welcome to the gastroenterology community!  I think it sounds like you could have GERD that is very difficult to treat.  I think another endoscopy is a good idea.  I would also recommend you get a second opinion from a different surgeon as this one doesn't really seem to have an open mind.