Celiacs And High Serotonin/urine Serotonin Level

[Brilla]

HI,

Has anyone had any symptoms of heart racing, yellowish stool, anemia and paleness with Celiacs?

Around July 3 I started getting very ill with these symptoms. I had nor been eating a Gluten free diet when all of these symptoms began. I have been feeling this way since July 3. I have also been anemic since last December and stated weekly iron infusions which have slowly improved my iron level. 2 weeks ago I went o see my doc and get another infusion my doc gave m2 2 liters of IV fluids instead as my blood pressure was very low. While having the fluids my heart rate, BP and pulse shot up and my hands were shaking. He decided after the fluids to do some blood work. He did a Serotonin plasma level which came back as 236 which is elevated. The cut off level is 166. He also did a 5 HAAI 24 Hr urine to look for Serotonin levels in my urine. This came back as 8.1 which is high as the cut off is 6.0. These levels are indicative of a Carcinoid Tumor. I have read that these tumors will secrete Serotonin. But, I also read that Serotonin is made in the gut and could be linked to GI disorders. I was wondering has anyone else had these tests and could untreated Celiacs be the cause? The physical symptoms of Carcinoid is flushing( I have Rosacea) so I do flush. Diarrhea is another symptom. But Celiacs can cause diarrhea. I also had a Chromagrannin A, ECL test which is a tumor marker and that one was negative. I found out after I took the 24 hr urine test that for 3 days before you cant eat bananas, nuts, cantaloupe and tomatoes, as these foods can increase the Serotonin in your urine. I ate those before during and after the collection started. I have not spoke to Doc about this as he went on vacation after I got a copy of my results. Could any one please tell me if they have gone through the same thing? I am scared and I hope the tests are flawed, or my Celiacs caused the test results and I don't have a tumor.

[Tyson Holly MD]

Wondering if you had any follow up for us on this. My serotonin and gastrin levels just came back elevated but have yet to hear from GI what the next step is going to be. My genetic test was also positive(first positive test other than chronically elevated lymphocytes, elevated esr and crp, and electrolyte abnormalities but no real "celiac" tests were positive bc I refused to eat it ever again!), so perhaps he'll believe me this time that it's not all "stress and depression" (even though I am one of his colleagues). So frustrating.

I too am vigilant about allergen free-none of seven common allergens plus some others we've discovered. But still having excruciating right upper quadrant pain and almost pure watery stools up to 15 times a day. Entocort may help a little but not much. Prednisone definitely helps but there are so many awful side effects. I've been going up and down on these for 7 months now w no remission. Also have to take narcotics and muscle relaxers which I hate, but keep me out of the hospital.

To be honest I think there's a spectrum from intolerance to Crohns and if they can't get this under control, I'm headed for crohns. This week the ruq pain has been so severe it literally takes my breath away and I'm barely eating to prevent more pain (feels like pouring rubbing alcohol on a terrible road rash).

Hopefully someone has had these results and can tell me if your MD blew them off or searched for a neuroendocrine secreting tumor.

Thanks, Tyson Holly,MD

[Squishyleo]

Neuroendocrine Tumors can be caused by Celiac. You can repeat your test without the food factors, but do not delay if there’s a possibility of these tumors.