GERD comes and goes

amother

Wed, Aug 16 2023, 7:26 pm

Can GERD come and go?
My 4 year old has been diagnosed 2 years ago and has been on omerprazole. I have realised that he is fine for 2-3 months and then has symptoms for 2 weeks. I weaned home off the omerprazole because I wanted to see how he will be and it was the same- 3 months no symptoms and then 2-3 weeks pain, wretching and vomiting.
I wonder if there is something else going on. I have spoken to his gastro doc but we are not getting anywhere, I don't even know what else we can check for. From a gastro perspective everything has been check, Crohn's, celiac, EoE...
I am trying to find out if GERD can come and go or the symptoms would always show.

lotta

Mon, Feb 19 2024, 9:06 pm

oneofakind wrote:

Have you tracked his eating? Maybe it's triggered by a certain food. I know dairy does it for me.

Look into histamine intolerance. When your body has a histamine overload, it could cause a flare.

amother

Valerian

Mon, Feb 19 2024, 9:51 pm

Have you seen an allergist? I had two kids diagnosed with GERD who were on Omeprazole as babies. It did not help the first, he had a swallowing issue along with a milk/soy protein intolerance and an egg allergy and the highest safe dosage did nothing so we stopped it. B"H a gastro was able to diagnose properly. My second had egg and dairy allergies and was diagnosed with GERD and put on Omeprazole first. It helped his symptoms a lot but not completely, once I eliminated milk and eggs we were able to wean him off the meds. I've learned a lot along the way... Be'ezras Hashem next time around I know to eliminate before we go the GERD route. I wonder if there is a food your son is eating less frequently that could cause it? Our SLP/feeding therapist told me that the Omeprazole will help mask allergy symptoms and make it less uncomfortable. In the end my baby outgrew the milk and egg allergies but has other ones that are less common foods and could cause flare ups less frequently.

amother

Tue, Feb 20 2024, 3:50 am

He has had allergy testing blood tests, everything was fine. Recently he had 3 months of nearly no symptoms and between he had an endoscopy and they saw a big improvement (no more ulcers) but still some reflux so gasro said maybe he is growing out of it but for the last 3 weeks he has been really uncomfortable at night and feeling nauseous and retching in the morning.
This is exactly what we have going on a few months fine and a few weeks not. I don't feel comfortable having him on omeprazole all these months that he is fine and I also don't see any difference when he is off them.

amother

Tue, Feb 20 2024, 6:27 am

lotta wrote:

Look into histamine intolerance. When your body has a histamine overload, it could cause a flare.

I will look into this as he has always been sensitive, gets red rashes and hives and has already had twice a bad reaction where his body was flaming red and very itchy. He scratched himself so bad that it was bleeding and took a few days to heal. We have also had some random wheeze episodes.

Regarding food intolerance, I have written a food diary and nothing popped up. Tomatoes did as some point so I kept him off all things with tomatoes and since he ate pizza and nothing happened so he has restarted eating it.

lotta

Tue, Feb 20 2024, 10:39 am

amother OP wrote:

Look into EoE, if you haven't yet. Sounds a LOT like histamine intolerance/MCAS family (If the symptoms are very bad and caused from things other than food also).

The thing is it's a threshold more than the actual food. Lets say he had tomato, lemon and chocolate one day with hotdogs, that might tic him off, as apposed to just a bit of ketchup... Ask your doc about doing a H2 blocker as apposed to/in addition to a ppi. (Pepcid, axid...) You might also ask your doctor about taking a low class antihistamine for a few days to calm his system, when he flares. Don't know where you from, but here in the USA not many doctors are educated enough about histamine issues/MCAS. Took a very knowledgeable GI to put the full picture together in our case.

Much Hatzlacha!

lotta

Tue, Feb 20 2024, 10:43 am

lotta wrote:

Look into EoE, if you haven't yet. Sounds a LOT like histamine intolerance/MCAS family (If the symptoms are very bad and caused from things other than food also).

The thing is it's a threshold more than the actual food. Lets say he had tomato, lemon and chocolate one day with hotdogs, that might tic him off, as apposed to just a bit of ketchup... Ask your doc about doing a H2 blocker as apposed to/in addition to a ppi. (Pepcid, axid...) Also, H2 blockers have less side affects. He might still need PPIs if he had ulcers. Personally my case was also waxing and waning with some gastritis. At it's worst, combo of PPI in the morning and H2 blockers helped most.
You might also ask your doctor about taking a low class antihistamine for a few days to calm his system, when he flares. Don't know where you from, but here in the USA not many doctors are educated enough about histamine issues/MCAS. Took a very knowledgeable GI to put the full picture together in our case.

Speak to a doctor about anything I wrote here that sounds right.

Much Hatzlacha!

amother

Chambray

Tue, Feb 20 2024, 11:14 am

lotta wrote:

Also fpies.

lotta

Tue, Feb 20 2024, 2:46 pm

Agree with previous poster that Fpies is something you should look into, although kids usually outgrow it by three. Symptoms start two to four hours after ingesting offending food. Oats, rice, squash, carrots and apples were our main offenders. She outgrew most of it by a bit over two.

If you have any questions regarding Mcas, histamine intolerance, or Fpies I have experience between myself and family members, feel free to ask.

amother

Tue, Feb 20 2024, 3:01 pm

I just checked some of the things mentioned, he definitely never suffers from diarrhoea so it seems like fpies and MCA's both have that symptom.
The histamine intolerance seems the most similar to his symptoms but question is, when he has the pH impedance study which was measuring the acid he had a spike in acid when lying which I assume would indicate GERD. I haven't yet had an appointment with the gastro team since the study to discuss the findings but I could see the pH number dropping as he was sleeping.

amother

Chambray

Tue, Feb 20 2024, 3:26 pm

amother OP wrote:

It's not that he doesn't have gerd, but Gerd is usually a symptom caused by something else

lotta

Tue, Feb 20 2024, 3:52 pm

amother OP wrote:

Just saying Fpies can come with extreme constipation and there is still inflammation. Our experience... Wouldn't jump down the MCAS route either way only if there are other issues involved also. Just mentioned it.
Agree that GERD is a symptom very often, so just treating it without understanding what is causing it can be super frustrating. Can be simply a weak muscle causing a backflow. However, because you said it comes and goes had me thinking...