carcinoid tumors - same symptoms as histamine

[barbiem]

Hi,

I have been on this journey since aug 2012 and have been helped by those in this group immensely. Had it not been for this group and the advice I rec'd about stopping yogurt and the histamine issue, I would have not gained the 10 lbs I have finally gained in the last 2 months nor feeling that there is some light at the end of the tunnel. Since discovering all about histamine and mast cell issues and giving up the foods that were contributing to my overload of histamine (yogurt,avacodo and bananas and blueberries 3 x daily for 6 months as per SCD diet) I am definitely better. I am on ketotifen and also LDN and still entocort as still a ways to go with weight gain. I am afraid to start weaning off the entocort as I was feeling sooo good this last month. I went away for a week and ate a little more carbs (rice/rice flour muffins/pancakes/flourless peanut butter muffins etc.) more than normal due to being on the go a lot and they are easier to take with me to munch on when hungry. I have returned very ill, heart tachycardia arythmia back in full force and diarrhea and low low blood pressure. I have had to stop eating entirely as every food and water was causing my heart to go for an hour and I can't stand that!!! out of breath, chest tightness and low blood pressure (80/50).

Anyways, I got my 24 hour urine test back for amino acid/metabolic panel and the 5H1AA serotonin test. All was good but the 5H1AA - my level was at 40 and the ref range is <41. This means anything above 41 is a 70% findings of a carcinoid tumour usually found in gastric tract . then I read up on it and the symptoms are sooo similar to histamine and are all my symptoms: diarrhea, heart tachycardia, flushing, low low blood pressure, weight loss, high histamine release etc. - now I am wondering ???? do I have a tumour?? these are rare and often misdiagnosed as IBS which I have had for 20 years - they are slow growing and most are not diagnosed for 10 years!!!!!

Anyone have any experience or knowledge about this?
babs

[DJ]

Hi Babs,

Many of us (myself included) had this test. There are certain major things they look for before moving on to other possibilities and medications that could mask important issues. I was just reading on a site for laboratory workers and found some info on this test. It seems that many things can impact results. See quote from lab company below. Don't draw any conclusions. Let your doctor do his/her investigation. It's standard procedure. The stress of worry could make your D act up.

"Limitations
Requires accurate 24-hour urine collection. Patients with renal disease may display falsely decreased results. Urinary 5-HIAA is increased in patients with malabsorption disorders who also display a larger concentration of urinary tryptophan metabolites. Urinary 5-HIAA is increased in patients with intestinal obstruction and with some noncarcinoid islet cell tumors......"

".....Drugs which can interfere with testing due to physiologic response: Acetaminophen, alpha and beta blockers, atenolol, bromocriptine, broncholdilators, clonidine, digoxin, isoniazid, L-dopa, labetelol, methyldopa, monoamine oxidase inhibitors, nitroglycerin, sympathomimetic amines, phenobarbital, phenothiazines, phentolamine, reserpine, salicylates, tricyclic antidepressants."

Can you step back to eating meat and very few carbs, whatever worked for you in the very beginning? Focus on meat and tranquility.
Let the doctor investigate.

Keep us posted

DJ

[barbiem]

DJ,

Thanks for easing my mind - I have read and reread over the very similar findings you posted just to try and make sure I did everything right which I did. I am not on any of those meds and I even stopped my ketotifen for 3 days prior to starting the test. My tryptophan as in mid range so no flags there at all :( - I did last year have fat malabsorption issues but that is now gone since starting last May pancreatic enzymes. My Lipase is always within range now. That is why i am concerned. The symptoms are just so closely related plus I just read edema in lower limbs is another symptom which I also get periodically. But you are right, I shouldn't worry myself to death about it just in case it's nothing. But if it is a tumour and it can be removed, it does say I would then be symptom free!!! So I don't know which is worse? not having it or having it LOL

babs