Where To Go From Here? I'm Baffled!

[vegan lisa]

I'm totally baffled as to what to even discuss with my doctor. Here's a short summary of where I've been:

*Misdiagnosed with gastritis after suffering from stomach pain, which at the time I thought was heartburn. I know now that sharp pain under the left ribcage isn't heartburn, but that's what I thought it was back then. I was "treated" with nexium and diet (no spicy foods, no alcohol, no fried foods, etc). Got much, much worse. Regularly had D, black, tarry, loose stools, more pain. Joint pain continued, hormone issues continued (early menopause symptoms).

*After 6 months of suffering, I was referred to a GI who did blood testing (3 tests plus total IgA), an endoscopy with 3 biopsies, a CT scan, and a colonoscopy. All were normal. Blood results were 0. The biopsies were totally clear. However, at this point I HAD developed actual heartburn!

*I quit taking nexium. Aside from the pain in my stomach and the D for 3 hours most mornings, joint pain and menopause stuff, the rest went away. No more oily stools, NO MORE Heartburn!! Bad Nexium!

*My GI doctor said "You do not have any of the illness which I treat." and dismissed me as a patient.

*At this point, I took matters into my own hands. I quit eating any foods I thought were suspicious: gluten, apples, and honey. I felt 90% better. NO joint pain, no heartburn, but still had occasional mild stomach pain, an occasional D that I couldn't be sure was from cross contamination or some other food I had eaten. I had a few slip-ups that I was aware of, but it's so hard to draw that direct connection between the oatmeal I ate and the 4 days of D, brain fog and fatigue. Maybe I was just fighting some virus?

*So my regular doctor referred me to a GI specialist at a big research hospital at a University a few hours from where I live. He looked at my biopsy slides again, and said there was mild inflammation in my stomach and in the join of the esophagus and stomach. (Duh, the nexium I was taking gave me heartburn!) For what it's worth, he did seem very knowledgeable about celiac and non-celiac gluten sensitivity/intollerance. He really thinks celiac is unlikely. He decides that my pain might be from the stomach acid and puts me on Zantac and gives me the go ahead to eat whatever I want. This was last week.

I've been taking Zantac for 4 days, and I reintroduced apples (still no honey or gluten). I feel awful. I have heartburn every single minute. I have that horrible taste in my mouth, and my whole chest hurts. I've had a constant mild headache (known side effect). My stools are getting dark and oily again. The doctor's idea was that the histamine blocker in Zantac would help me reintroduce foods, but so far, not good with apples.

So what do I do now?? Do I try wheat?? It seems so hard to draw any direct connections between symptoms and what I eat. There are too many variables! How long do I give the zantac? I've given up on apples to see if I feel better, and I don't yet. But, the apple thing seems really weird, right? I don't have problems with other high-fructose foods. Nor do I have much burping (except when I'm on a heartburn med!).

The new GI doc also wants to re-do the EGD, but what else could he be looking for? The meds that make people "forget" don't work for me. I remember every thing from my first EGD. I really don't want to put myself through that in a hospital 2 hours from home to get more inconclusive results, you know?

Any ideas/advice is welcome. I really don't know what to do, or if it's possible to make any progress with or without a doctor. There aren't any tests left to run! My food diary doesn't seem to be telling me much, either.

Thanks for reading my long saga!

Lisa

[Takala]

Q.

"..... but what else could he be looking for ?"

A. Insurance reimbursements.

This has been a simple answer to a simple question.

Q.

"...but what do I do now ?"

A. Stop eating foods that bother you, and stop taking medications which are making it worse. By eliminating the root cause, you may be able to reintroduce other safe foods back in.

[ravenwoodglass]

I would also say to stop the meds that are making you worse. You say you felt 90% better gluten free so do stay gluten free. Many of us react to oats so do drop those also. 4 days of D. brain fog and fatigue are typical 'I got glutened reactions'. Do you eat soy? That can also be a problem so eliminating that would be my next step.

If you have been gluten free the tests for celiac will be negative. If you want them to diagnose you for celiac you need to go back on gluten for 3 months or so.

[cassP]

the only antacid pill i'll take ever again is Zantac- and ONLY temporarily IF i have an ulcer...

its better to take something more mild like Pepto Bismol or tums (gluten-free ones only).. because the proton pump inhibitors can make things worse- they shut down your stomach so that it cant make stomach acid.. but if your stomach is not in the middle of an ulcer- it NEEDS all your stomach acid.. if your stomach doesnt have enough stomach acid- then that sphincter between the stomach and esophagus will loosen and not clamp down.. and then whatever acid is left in your stomach will leak into your esophagus.

plus- if you reduce your stomach acid too much- you then cant digest foods properly.. and it creates an environment in which H.Pylori LOVE to flourish in.

apples CAN be problematic not just because of the fructose, but because of it's acidity. if i were you, i would avoid apples untill you've got this whole thing figured out.

good luck, hope you find your answers

[canutillo]

My dd19 is cannot eat apples. Or any fruit with a pit. I would stop with the apples. Then when you are feeling good again, it is up to you if you want to try gluten. I wouldn't bother if you feel so much better.

It takes time to heal. I read somewhere that it can take up to 4 years for gluten to get out of your system. I have been gluten-free for a year and will still on occassion break out in a new patch of dh or feel really icky for a couple of days- but am still improving. So that feeling 90% better can still reach 100% with time.

Of course, there could be something else in your diet that effects you (corn, soy, dairy, etc)

[vegan lisa]

Thanks for your thoughts. I quit taking the Zantac, which as you all pointed out, makes perfect common sense! It took about 2 weeks to recover from the rebound reflux when I quit taking Nexium, but I'd been on that for 7 months. I've only been on Zantac for 3 days, so I hope to recover more quickly.

I put a call in to my GI, but am going to hold off on any food introductions until I feel better. The doctor insisted it would be fine to do all of this at once, but clearly it isn't fine.

I love apples, but it's not like they are hard to avoid, so that's an easy one to take out of my diet again. Thanks for the tip on apples, Ii didn't realize that it was a problem food for acid, espeicially since the foods I usually think of as acidic (tomatoes, citrus) are fine for me. I think.

Ok, off to think about something else before I start second guessing myself. Again.

Thanks for your replies. The first reply made me laugh! All of the replies were very helpful! I appreciate your time and wisdom!

Lisa

[cassP]

i know- i didnt always know that apples (esp. apple juice) can be too acidic...

im fine with tomatoes in moderation. lemons & grapefruit actually turn the stomach and body alkaline. and OJ-> i avoid like the plague!!!!!!! unless i wanna end up worshipping the porcelain god