Calling all stomach/digestive experts......

[kathymuggle]

Ds is going back to the doctor in a week. He has a diagnosis of GERD, but to be frank, I do not really buy it. I think something else might be at play. At a minimum, I want them to look for something else without just dismissing it (and him) with "it is GERD - take Zantac for the rest of your life."

I know no one can diagnosis anything online - but if you can give some direction/things to ask the doctor to look for, that would be great.

He has been ill since April (not a typo). He has been to the doctor 3 times - 2 emergency room visits to rule out appendicitis, and one visit to a GP. All say he has GERD and to take Zantac. He has been seeing a chiropractor regularly for 6 weeks - it turns out he has mild scoliosis and she thought the spine might be compressing the nerves that might be causing the pain. Sadly, spinal manipulations have not changed anything. We will keep seeing the chiro, though, obviously, to keep an eye on the scoliosis

He tried Zantac. He is no better on Zantac than off - so he is off. We have tried elevating his bed, and changing his diet to no effect.

He has the following:
pain in stomach
pain in esophageous
occasional naseau
occasional vomiting
fear of eating - due to it causing the above
He has lost weight - but that may be due to less eating overall. He does eat, often quite well, when he is feeling better
bowels are usually (but not always) fine.
occasionally (rarely) his chest hurts and his breathing is ragged
he looks pale and has bags under his eyes despite sleeping a lot (amy even be oversleeping - not sure, as I am not sure when he goes to sleep)
Anxiety - he thinks what is causing his pain is a GERD demon, and honestly, I think he is only half joking. Plus he is afraid to eat.
Symptoms are worse in the morning, and alleviate at night.
Driving in the car makes symptoms worse. (may or may not be relative)
If you ask where he is on a pain scale from 1-5, he is always a 2 or 3.
Depression - I do not think he is depressed, but I worry a bit about this one. We tried to go paint balling - he could not enjoy it, due to pain. ditto water park and recent trip to museum. Also - his friends are AWOL. One is away for the summer, one has turned to Jesus and drugs at the same time (sounds like a country song I know) and the pain might make him not great company.

I have asked him if he wants to talk to someone (a counsellor) and he has said no. I told him to tell me if he changes his mind.

He does not have an ulcer (tested negative for h pylori).

I think that is it.

Here is what I want the doctor to test for:

celiacs
parasites

anything else fit the profile? I do not think it is Crohns or IBS due to lack of major bowel issues - but i could be wrong. 14 yr olds are not exactly forthcoming about bowel issues - but I do think they are mostly fine

any advice?
edited to add: if we do not get answers from the doctor, he will go see a naturopath

[kjbrown92]

Have you kept a food journal?
What foods have you tried eliminating? Separately or at the same time?
What about a Genova stool test - could give you good information about parasites and/or good/bad bacteria mix, etc. My DS needed enzymes and a certain probiotic, so for us, it gave us good information.
Stress wreaks havoc on any symptom.
An osteo might be a good fit (a true osteo that is) because they could work on alignment issues and do things like the stool test and supplements.

[onegirloneboy]

This might sound crazy....I had all the same symptoms he did and I am finally feeling better. My problem was blood sugar. I am insulin resistant (PCOS) and went off the meds when I was prego and didn't go back trying to fix it with diet and exercise. Finally when I was having a really bad day my mom suggested checking my blood sugar and they were through the roof. After reluctantly starting back on Metformin and getting my sugars back under control I am not having any of the gastro problems or the anxiety.

Hope you find something that helps!

[sbgrace]

Demon causing GERD--could the anxiety be OCD related?


Food journal (for intolerances or even adult onset allergies) would be a really good idea. I'd also follow the typical avoidance of GERD provoking foods because his symptoms do sound reflux related to me. I agree with you on finding underlying cause but avoid the triggers--high fat foods before bed especially, chocolate, mint, tomato, garlic for some, etc. These are most important to avoid in the evening and before bed. Zantac is a poor choice for reflux so I wouldn't take lack of response as a "not reflux" indicator. Beyond that, food related reflux is generally does not respond to reflux meds or doesn't fully respond to reflux meds.

There is some evidence that melatonin can help with reflux and may help with sleep as well as the anxiety is likely interfering with sleep.

If you can find someone who will order it I suggest a metametrix comprehensive stool. It will find a parasite (or bacteria) if it's there because unlike all the other tests they do DNA profiling and they look for all the bugs instead of just select ones. It will also look at foods, immune response, and many other things. You can look over their website but this test has been really helpful here for tracking down GI things.

If you've got an osteopath I'd look into that for adjustments given chiropractic hasn't helped. Accupressure may help as well if that is available.

If you don't get answers you may want to look into EOS disease with a GI but hopefully it's not along those lines.

[Strong Mama]

Could it be cyclic vomiting syndrome?? Sometimes this goes undiagnosed, and it almost always is in combination with GERD/reflux. Usually they give a gerd diagnosis in the original diagnosis. And also episdoes can last for weeks, not just in cycles. check out cvsa.org and read up on their boards ...just a toss out there for you.

[CarrieMF]

gallbladder, especially if the pain in his stomach goes towards his back at all.

Did they do any other tests for an ulcer like a barium swallow(it won't pick up all of them).

Have you taken him back to the GP at all? I'd go back & say the Zantac isn't working what's the next step.

[A&A]

Originally Posted by CarrieMF

gallbladder, especially if the pain in his stomach goes towards his back at all.
.

I was thinking gallbladder, as well. They can check for stones with an ultrasound or they can do a more definitive test called a HIDA scan that measures how well the gallbladder functions.

[mykdsmomy]

Something similar happened to my daughter a few years ago. She went by ambulance to the hospital a few times because she almost passed out from acute pain in her belly. She saw several GI's over the course of a few months. She was even hospitalized for several days with pancreatitis. One GI thought for CERTAIN it was Crohn's or UC even though dd didn't have ANY bowel issues (no diarrhea, constipation, etc).
She finally agreed to a colonoscopy/endoscopy. One Dr. took a look and said it was Crohn's, the other (more conservative) GI said she didn't think it was but could be the "beginnings" of it. They put her on some antibiotics in case it was bacterial and she has had few issues since then.

Honestly, I would ask them to treat it as a bacterial infection (it's the hardest to diagnose but can be treated with antibiotics). It could be gallbladder (I still wonder if dd has that as well). I also think he should have a colonoscopy to rule out Crohn's or UC.

If everything comes back ok, (and they treat for a bacterial infection), it could be a food sensitivity or severe anxiety

When I was 12, I started having tummy issues. One night I sat down to eat and all of a sudden, I felt sick (like I was going to vomit). For the next few months, I was unable to eat but a few bites of food before I felt sick. An upper GI revealed nothing abnormal. It was anxiety. It came in out of the blue and manifested itself through my tummy I would not be too quick to dismiss that idea after you explore all the others. Good luck and please keep us posted!

[kathymuggle]

Thanks, everyone, I am making a list.

[mellowjello]

DD had horrible reflux for the first two years of her life. It is horrible!!!!! Zantac was not very effective for her but Nexium was extremely effective for a few weeks, then stopped working, and actually ended up harming her due to the way PPIs lower stomach acid, which creates a more favorable environment for pathogens (bad bugs) and also interferes with nutrient absorption.

I cannot give you sources for this info but my belief which has been reconfirmed many times is that reflux is a sign of liver stress. Liver can be stressed from detox. He may be going through a stressful time in his life, which compromises the immune system, allowing pathogens to flareup. The detox organs must then handle the waste products. I would use milk thistle to support the liver, b12, magnesium for detox support, and probiotics/probiotic foods to rebalance the gut. Parasites are also a good thing to check but even if it comes back negative I would still do periodic parasite cleanses for maintenance because a regular stool test will have high false neg (outside labs like Metametrix are better at picking them up).

I do think Nexium is a great thing for short term to take away the pain and stress with eating. Reducing stress and anxiety is very important. But drugs are not a solution, they are a bandaid. Try to make meals relaxed and easy to digest. As SBgrace said it might be helpful to eliminate foods for right now like cinnamon, mint, chocolate, caffeine, etc.

Has he done the beet pee test to see if HCL is too high or too low?

I would not do chiropractic but I would strongly recommend craniosacral therapy from a doctor of osteopathy who is very good at craniosacral work. I know chiros work on the vagus nerve but our D.O. said the chiro work I did for DD could have actually harmed her. Accupuncture is another idea.

[lolar2]

It is possible, though unusual, to have Crohn's without any obvious intestinal symptoms-- it can appear anywhere in the digestive tract, "from your gums to your bum," is what the GIs say.

[JaneS]

You've gotten some really good advice!

You can order a CDSA at Direct Labs w/o doctor too
https://www.directlabs.com/Default.a...en-US&tabid=55

[greeny]

He does not have an ulcer (tested negative for h pylori)

I tested negative for h pylori and still had two ulcers, diagnosed via endoscopy.

I recommend an endoscopy, actually. It takes a really good look at everything from the inside and can give a lot of information.

[kathymuggle]

Originally Posted by greeny

I tested negative for h pylori and still had two ulcers, diagnosed via endoscopy.

I recommend an endoscopy, actually. It takes a really good look at everything from the inside and can give a lot of information.

Was it painful? Were you under sedation?

[kjbrown92]

Originally Posted by kathymuggle

Was it painful? Were you under sedation?

I'm not the person that recommended the endoscopy, but I've had them twice (and for me, they ruled out ulcers, that was about it). There was sedation of some sort. I woke up partway through and saw the doctor taking the tube out of my mouth, and he told me to go back to sleep, and I did. I was 20 the second time. The first time was probably a few years before that. They weren't painful though.

[greeny]

Was it painful? Were you under sedation?

Not painful at all.

I was under "twilight anesthesia" or something like that, which supposedly is where you're semi-conscious but really out of it. However, I remember absolutely nothing about the endoscopy. I remember them saying, "Okay, we're going to give you the sedative now," and the next thing I knew I was awake and the procedure was over.

It was really helpful for the docs, because like I said they discovered the two ulcers and a fair amount of esophageal erosion.

(I ended up being on Prevacid for about two years, and then I went off it and - knock on wood - haven't had any issues since. I now take a daily probiotic, and I think that's helping tremendously.)

[A&A]

Originally Posted by kathymuggle

Was it painful? Were you under sedation?

So I turned to the nurse and said, "When are you guys going to do the procedure?" and she said, "We just finished." So my sedation worked great! I had a sore throat for a couple of days after that, though.