An update.. Kinda scared.

[yogamom1]

Well I saw my GI doctor today and I'm pretty nervous. I got my lab results back today and some things seem worse. About 2 weeks ago I posted about my high serum gastrin results, which were pretty high at 1847. I did research after the fact and found out it was supposed to be a fasting test (thank god I noticed this!!). No one told me before hand for some reason so I had it redone along with parietal cell anti body, intrinsic factor blocking antibody chromogranin a, 5-hiaa creatinine, reticulocyte count, ferritin, and iron. This time I fasted for over 12 hours and my gastrin test came out at 4307!! I couldn't believe it was so high. Especially in such a short time. The results to the other tests are chromogranin a: 61 (high), parietal cell: 122.1, intrinsic factor: negative, 5-hiaa 2.4, creatinine: 164, reticulocyte count: 1.03, iron:87, ferritin: 17.0. My iron levels are at those levels currently with daily supplementation combined with vitamin c. I can't really get ferritin up much higher than this. After Doctor reviewed these results he's thinking I have Zollinger Ellison syndrome since my gastrin is so high. He keeps explaining to me that my gastrin is high because there's way too much acid. He again wants me on dexilant but at a double dose. He also wants to do a PET scan and MRI to look for neuro endocrine tumors. I have spent many hours on various credible medical websites and have talked to a lot of you on here who seem to know your stuff and I kept reading that when gastrin was high it meant low stomach acid. I did however read that if it was Zollinger Ellison syndrome that stomach acid would be high. Can anyone verify that for me? I've been holding off on taking dexilant (I assumed I probably had low stomach acid) but if I have high stomach acid I'm thinking I should be on it. My heartburn, nausea, and upper abdominal pressure symptoms have been atrocious the past few weeks. Doctor insists I don't have pernicious anemia despite symptoms and high parietal cells. I can't maintain b12 levels and have to supplement very heavily to keep it in the 500 range. Does anyone know if my lab results point to anything else? So far Zollinger ellison syndrome, neuro endocrine tumors, and atrophic gastritis have all been entertained. Doctor thinks I'm very close to diagnosis but these latest possible diagnosis are scary! Sorry this was so long I'm just so worried and confused. Thank you to all who have read this far.

[Hillwoman]

Please could you give us the ranges for your various results, so that we can put them in a more accurate context? That will help the forum to advise you.

Hang in there, I'm sure someone will be able to help.

[yogamom1 in reply to Hillwoman]

Hi yes. Sorry I didn't include that before!

Reference ranges:

Gastrin: 0-100

Intrinsic factor: negative

Parietal cell: <20.0

Reticulocyte count: 0.50-1.50%

5-hiaa: <10.0

Chromogranin a: <36.4

Creatinine: 20-320

Ferritin: 8.0-388.0

Iron: 50-170

[Hillwoman in reply to yogamom1]

I'm afraid I know nothing about Zollinger Ellison Syndrome, but someone else might be able to comment. Your GPC abs are well over range, and gastrin is very high. There's enough there to raise a suspicion of PA, and the IF antibody test is unreliable anyway.

[fbirder]

Did you look at the paper I linked to before - onlinelibrary.wiley.com/doi... - I know it's complicated in parts, but the summary tables and flow charts should help.

The high gastrin is a fair indicator of either Gastric Atrophy (GA) or a gastrinoma caused by ZES.

GA would also cause low stomach acid, and inability to absorb B12 - with subsequent symptoms of deficiency. Autoimmune GA would be caused by high levels of anti-GPC (gastric parietal cell) antibodies.

You have - symptoms of a B12 deficiency, low serum B12 levels, high anti-GPC antibodies and low iron. Those all point to Autoimmune Gastric Atrophy as being the cause of your hypergastrinaemia.

On the other hand - you have Barrett's Oesophagus. Which is indicative of high stomach acid which, in association with hypergastrinaemia, would point to ZES.

I presume you've had a gastroscopy to show the Barrett's Oesophagus. Were there signs of gastric atrophy? Were there signs of peptic ulcers (present in the majority of cases of ZES)? Have you had your stomach pH measured?

I think your doc has seen the anti-IF antibody result and assumed that it showed you don't have PA. 50% of people who do have PA return a negative for this test. So it is a wrong assumption.

Of your possible diagnoses, I wouldn't be too scared.

Gastric atrophy: All of us with PA have this. As do a lot (the majority?) of people over 65.

NETs: Type 1: The most common type of NET (but still very rare). Caused by gastric atrophy. 5-year survival rate is better (95%) than for people of my age without NETs (I guess because we have more health monitoring). I have these and my treatment is to have a gastroscopy once a year to make sure they're behaving themselves.

NETs: Type 2: These are the ones caused by ZES. They rarely metastasize and 5-year survival rates are about 90% (and getting better all the time).

[fbirder in reply to fbirder]

Forgot to mention -

The CgA (chromogranin A) high result does suggest the presence of a NET (Type 1 or Type 2). So this needs to be examined further. Luckily the same techniques can be used for both.

I had two tests when looking for mine - an Octreotide scan and a DOTATATE scan. The latter is more sensitive and much easier for the patient. Unfortunately, it does mean going to UCH in London because it needs a PET/MRI machine - and they've got the only one in the country.

Both tests involve getting injected with a radioactive marker, letting it bind to the NET, then looking for the radioactive bits.

The Octreotide scan means having a scan (which lasts about 40 to 90 minutes) 4 hours and 24 hours after the dose.

The DOTATATE scan means having to wait a much shorter time (can't remember exactly) before the single scan.

Both mine were negative (as was my CgA test) as they're very small. Indeed, they only show up in biopsy samples.

[yogamom1 in reply to fbirder]

Thank you so much for your detailed and helpful reply! I have the chart saved that you sent me last time but I've just been so confused since so many of these symptoms overlap multiple conditions. It's also confusing that both high and low stomach acid present themselves with the same symptoms. I think I will try the 10 day trial of dexilant the doctor gave me and see if there's even just the slightest bit of improvement. Like I said the heartburn and acid coming up my throat have been horrendous the past few weeks and happens no matter what I choose to eat.

When I had my upper endoscopy my biopsie results were as follows: duodenum, second part: mild duodenal intraepithelial lymphocytosis (says this finding is of uncertain significance and it can be from celiac (don't have that), nsaid use (don't use them), h pylori infection (don't have that either), lymphocytic colitis, bacterial overgrowth, and systemic autoimmune disease.

Duodenal bulb: unremarkable duodenal mucosa.

Esophagus: gastric type mucosa with intestinal metaplasia. (This is the one that diagnosed me with Barrett's esophagus I believe).

Stomach, antrum: mild reactive gastropathy. No intestinal metaplasia, no h pylori.

Esophagus, lower: gastric type mucosa with chronic and active inflammation. No intestinal metaplasia, no esophageal squamous mucosa present.

Esophagus, mid upper: unremarkable squamous mucosa. No fungal organisms or metaplasia.

I had this done in early August. That was the pathology report, the doctor said in his notes of procedure that pyloris was spastic, antrum was slightly contracted. Esophageal sphincter had a bit of bleeding, nothing large scale. Nontender ulcer L slightly elongated. Small amount of friability in the proximal esophagus.

The exact words of peptic ulcer weren't mentioned and they didn't measure stomach pH (how's that test done?).

I think once I get a diagnosis with this doctor that I will find someone else for a second opinion. Although, this doctor has been the most helpful as I've seen GI doctors for years and have tried to convince them that something more was wrong but was given the brush off and told it was IBS.

I will ask about those specific scans. He just mentioned that a PET scan would light up if there were tumors and the MRI would help with soft tissue type tumors.

Anyway, thank you again for your reply!

[fbirder in reply to yogamom1]

Thanks.

I can understand how your doc is a bit confused (because I am totally confused - too much biology for a chemist). It does seem as if you have a mixture of symptoms.

For a PET scan you do need some sort of radioactive marker. I would hope it's a DOTATATE scan, but there are other, more general, scans (an FDG scan is one, if I recall correctly).

It does sound like your doc is on the ball, so all I can add is to remind you - don't worry. It's very unlikely to be anything serious.

[SlowDragon]

Have you been thoroughly checked for thyroid issues too. These can cause low stomach acid (also often incorrectly miss diagnosed as high acid)

Tests needed - TSH, FT4, FT3, and both types of thyroid antibodies (TPO & TG)

Check vitamin D too

[yogamom1 in reply to SlowDragon]

Hi,

This past year actually I was diagnosed with hypothyroidism when my TSH suddenly shot from 1.57 to 8.24. At the time my T3 reverse was: 22, anti TPO: 4, anti thyroglobulin ab: <1, free triiodothyronine 3.59, and thyroxine free: 1.07. I was told the rest were normal except my TSH. I took no medications as my primary said I didn't need to if I didn't want to. I tested it every month for 5 months and it gradually came back to the 2.00 range by July I believe. I had had my thyroid tested repeatedly for many years (as I've had hypothyroidism symptoms since 2011) and it wasn't until March this year that I got an outrageous TSH. I believe I have some type of malabsorption issues because my vitamin D levels along with iron and b12 I can't maintain without heavy supplementation. I've been on 50,000 IU of D3 weekly since early this year because my levels plummet without it.

[SlowDragon]

Would low stomach acid perhaps be the cause of low nutrients?

It seems to be chicken or egg ........which causes which

Low vitamin D, B12 & ferritin also all hinder or stop thyroid hormones working (our own or replacement ones). But then may give an illusion of adequate thyroid levels, if tested.

Have you considered gluten as an issue? "Silent coeliac" means you might have no obvious symptoms, but can result in low nutrients too.