OP here. Thank you everyone.

To the chatgpt poster, was that you writing like chatgpt or was that actually chatgpt? Most of what you wrote was what I got also.

I mentioned the sleepiness in the daytime and chatgpt asked me when do I feel sleepy and I said after eating. It then asked me was it 2 hours after or more immediate in 30 minutes to 60 min. For me I feel sleepy more within 30 minutes and upto 2 hours so I mentioned that. Immediately it told me this is a sign of prediabetes changing to diabetes even if I don't have excessive thirst and asked me to get tested within 48 hours. I also mentioned that I had ketones in urine in May and it said this needs to be done ASAP.

Today I ate at 5:30 and around 6 something I was actually sitting and sleeping and wasnt really able to answer my kids and just wanted to lie down. At around 7:45 I was fine. I never really gave this much thought since I mentioned the daytime sleepiness to these doctors I saw and no one said anything about it and just ignored it. The daytime sleepiness has also been going on for almost 1.5 years though.

Tomorrow I will check and see if I feel sleepy after a big meal.

Good advice to keep a symptom journal along with weight checks and take these with you to upcoming appointment.

If possible bring a friend/family member with you to your appointment to take notes for you and for support.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Please go to CVS tonight and get an A1C check.

https://www.cvs.com/shop/cvs-at-home-a1c-test-kit-prodid-496010?skuId=496010&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&cid=ps_dme_pla&gclsrc=aw.ds&gad_source=1&gad_campaignid=21127674858&gclid=Cj0KCQiAubrJBhCbARIsAHIdxD_26UpMMARCL5JeXFlWDIfSA1aGgx9GtA78dLWqU0dW3s0nN_rnK30aAt-hEALw_wcB


This tracks very closely with my husband who was pre-diabetic then suddenly diabetic and 112 pounds at 5'10 and was loosing 3 pounds between appointments 10- days apart. He started insulin (essentially adult onset type 1) 2 years ago and life is wonderul now.

Was going to say, OP is known pre diabetic and hasn't necessarily made lifestyle changes. Then spent the holidays eating a lot (which who hasn't, not judging). Very well could be diabetic and that would explain the weight loss

but wouldn't frequent urination and heavy sweating be on the symptoms list?

OP. I don't drink much water but yet when I pee I don't empty bladder and have to go a few times. After I eat also I feel the urge to pee. Does that count as frequent urination?

While you wait for an appointment, keep a food/urine/elimination journal. I think 6 times urinating a day is "normal".

My ChatGPT response.


I’m really glad you reached out. What you’re describing is not something to ignore, and your concern is absolutely justified. I’ll break this down into (1) what your symptoms mean medically, (2) what red flags you’re showing, and (3) exactly what you should do next to get the right evaluation quickly.
(This is not a diagnosis, but a medically-informed roadmap.)

⸻

⭐ 1. Your collection of symptoms together is concerning

Individually, many of these issues can be benign. Together, they raise the threshold for further investigation:

Long-standing diarrhea (3+ years)

– This already warranted the workup you had.
– Inflammation throughout the GI tract is not typical for IBS; it’s more consistent with:
• IBD (Crohn’s/colitis)
• Microscopic colitis (sometimes missed on colonoscopy if biopsies weren’t taken everywhere)
• Infectious or inflammatory causes
• Less commonly, endocrine or pancreatic causes.

Unintentional weight loss

This is a major red flag.
• You lost 16 lbs unintentionally since May
• 8 lbs in 10 days is not normal, not explained by “IBS,” and should never be brushed off.
• No increased exercise, no calorie deficit, no major diet changes.

Neurological symptoms

Pins and needles, burning, pricking sensations, headaches → could indicate:
• B vitamin deficiencies (B12, B1), especially with chronic diarrhea
• Electrolyte imbalances
• An endocrine disorder
• Diabetes/prediabetes neuropathy (yes, neuropathy can happen before full diabetes)
• Autoimmune disease
• Medication effects (nortriptyline side effects were classic—good that you stopped)

GI symptoms + weight loss + neuropathy + inflammation

This is not typical IBS.
IBS does not cause:
• Inflammation on scopes
• Weight loss
• Nutritional deficiencies
• Progressive symptoms

⸻

⭐ 2. The IPMN

Your branch-duct IPMN in the pancreatic tail is important, but:
• IPMNs can cause pancreatitis, pain, and exocrine insufficiency.
• Weight loss can be pancreatic (fat malabsorption).
• MRCP in June showed stability — reassuring, but an MRCP does not rule out exocrine pancreatic insufficiency (EPI) or small cancers/masses obscured by inflammation.

This is why many patients get EUS even if genes are negative.
Your request for an EUS was medically reasonable.

⸻

⭐ 3. Why the weight loss is alarming right now

Dropping 8 lbs in 10 days without dieting is not normal and needs urgent evaluation.
It can reflect:
• Malabsorption (pancreatic, celiac, IBD, SIBO)
• Chronic inflammation
• Endocrine disease (thyroid, adrenal)
• Occult infection
• Metabolic derangements
• Cancer (GI, pancreatic, lymphoma—NOT saying you have this, but unexplained rapid weight loss must be checked)

⸻

⭐ 4. You need a different specialist — not the cyst clinic

You need one or more of the following:

✔ A general gastroenterologist who is NOT in the pancreatic cyst specialty clinic

The cyst clinic’s job is narrow: monitor cysts by size and genetics.
They ignored everything else, which is unfortunately common.

✔ A provider who will:
• Recheck you physically
• Evaluate systemic symptoms
• Review all your imaging and pathology
• Consider IBD, EPI, endocrine causes, and neurological symptoms

✔ Possibly an endocrinologist for:
• Rapid weight loss
• Neuropathy
• Prediabetes progression
• Thyroid/adrenal issues

✔ A repeat GI evaluation is appropriate NOW, not in a year.

⸻

⭐ 5. What tests would be reasonable at this point

These are the tests a good doctor would order for what you’re describing:

Blood
• CBC (anemia, infection)
• CMP (electrolytes, liver, kidneys)
• CRP/ESR (inflammation)
• Thyroid panel (TSH, free T4)
• A1C
• Vitamin levels: B12, B1, B6, D, folate
• Iron studies
• Celiac panel (tTG IgA and IgG, total IgA)

Stool
• Fecal calprotectin
• Fecal elastase (tests pancreatic function)
• Ova & parasite / GI pathogen panel
• Fecal fat test

Imaging / procedures
• EUS despite gene-negative status because:
• Weight loss
• Neuropathy
• Persistent pain
• Pancreatic cyst
• Prior inflammation on scopes
• Consider: repeat MRCP if symptoms progress

IBD evaluation

Did your October colonoscopy include:
• Segmental biopsies?
• A report distinguishing Crohn’s vs UC vs “nonspecific inflammation”?

This matters enormously.

⸻

⭐ 6. What to do today and what to tell the doctor

Because your weight is dropping fast, the next step is requesting urgent evaluation.

Urgent options:
• If weight continues to drop or symptoms worsen → urgent care or ER
(New neuro symptoms + rapid weight loss + GI inflammation can be emergent.)
• Otherwise: call your GI office and say:

“I have unintentional weight loss of 16 pounds since May, including 8 pounds in the last 10 days, ongoing diarrhea for 3 years, systemic inflammation on colonoscopy and EGD, neuropathy symptoms, and nausea. I need urgent evaluation — this is not IBS. I need labs, stool tests, and likely an EUS.”

If they refuse → request:
• Referral to a different GI
• Referral to endocrinology
• Or go to a large academic center’s GI department (NYC has many if you’re still New York area)

⸻

⭐ 7. I can help you prepare a script, timeline, or concise summary for a new doctor

If you want, I can create:
• A clean, one-page medical summary
• A timeline of symptoms and tests
• A script for what to say to get urgent evaluation
• A list of questions to ask the doctor
• Help finding a new GI at a major center (Cornell, Columbia, NYU, etc.)

⸻

⭐ Bottom line

You are not overreacting.
Your symptoms are not explained by IBS.
Weight loss this rapid is never normal.
You need a new GI, possibly an endocrinologist, and a proper systemic workup.

Anonymous wrote:Have you been tested for celiac?

Op, go to a new gastro asap. There are too many red flags for you to ignore. The cyst gastro you went to looks for that one thing, and unfortunately these doctors can be so myopic beyond their precise speciality.

Make an appt please and update us.

Have you been tested for celiac?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Please go to CVS tonight and get an A1C check.

https://www.cvs.com/shop/cvs-at-home-a1c-test-kit-prodid-496010?skuId=496010&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&cid=ps_dme_pla&gclsrc=aw.ds&gad_source=1&gad_campaignid=21127674858&gclid=Cj0KCQiAubrJBhCbARIsAHIdxD_26UpMMARCL5JeXFlWDIfSA1aGgx9GtA78dLWqU0dW3s0nN_rnK30aAt-hEALw_wcB


This tracks very closely with my husband who was pre-diabetic then suddenly diabetic and 112 pounds at 5'10 and was loosing 3 pounds between appointments 10- days apart. He started insulin (essentially adult onset type 1) 2 years ago and life is wonderul now.

Was going to say, OP is known pre diabetic and hasn't necessarily made lifestyle changes. Then spent the holidays eating a lot (which who hasn't, not judging). Very well could be diabetic and that would explain the weight loss

but wouldn't frequent urination and heavy sweating be on the symptoms list?

OP. I don't drink much water but yet when I pee I don't empty bladder and have to go a few times. After I eat also I feel the urge to pee. Does that count as frequent urination?

Anonymous wrote:What have your bowel movements been like? Unknown weight loss and your pancreas can go hand in hand with relation to your body digesting food. If you've noticed loose, watery, or discolored stools this is very likely the cause.

Weight loss can also be caused by new onset diabetes.

OP here. Loose watery stools for 3+ years. If I drink only 1 cup of water a day, that is the only time I have normal stools. I drink 2 cups of water now plus a cup of milk with cereal every day and I have loose stools.

Diabetes as far as I know is one of the earliest symptoms of pancreatic cancer. But the doctor in the cyst clinic did not even ask me to repeat the A1C when I informed her about the weight loss in August. She asked me to see my PCP for the pins and needles and burning pains I was having. I went to the PCP who ordered the a1c and at that time I had switched to brown rice instead of white but my a1c was still same.

After the JHU cyst clinic doctors dismissed me, I gave up advocating for myself, and stopped walking since I wanted to see if being sedentary would prevent this weight loss and here we go. Another 8 lbs in 10 days. This time I have pictures on my phone since I wanted to check my weight before and after Thanksgiving and see this. I also wanted to continue monitoring my weight.

A friend asked me to get a second opinion today and that prompted me to check my weight today. I'm not sure what other centers to go to in the DMV region for pancreatic IPMNs.

The second doctor at JH actually told me I have depression because they ran through these tests and found nothing (he said a 5mm ipmn is not a cause of worry) and when I asked him what about the weight loss he just said its probably because of something else.

Anonymous wrote:

Anonymous wrote:Please go to CVS tonight and get an A1C check.

https://www.cvs.com/shop/cvs-at-home-a1c-test-kit-prodid-496010?skuId=496010&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&cid=ps_dme_pla&gclsrc=aw.ds&gad_source=1&gad_campaignid=21127674858&gclid=Cj0KCQiAubrJBhCbARIsAHIdxD_26UpMMARCL5JeXFlWDIfSA1aGgx9GtA78dLWqU0dW3s0nN_rnK30aAt-hEALw_wcB


This tracks very closely with my husband who was pre-diabetic then suddenly diabetic and 112 pounds at 5'10 and was loosing 3 pounds between appointments 10- days apart. He started insulin (essentially adult onset type 1) 2 years ago and life is wonderul now.

Was going to say, OP is known pre diabetic and hasn't necessarily made lifestyle changes. Then spent the holidays eating a lot (which who hasn't, not judging). Very well could be diabetic and that would explain the weight loss

but wouldn't frequent urination and heavy sweating be on the symptoms list?

Anonymous wrote:Please go to CVS tonight and get an A1C check.

https://www.cvs.com/shop/cvs-at-home-a1c-test-kit-prodid-496010?skuId=496010&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&cid=ps_dme_pla&gclsrc=aw.ds&gad_source=1&gad_campaignid=21127674858&gclid=Cj0KCQiAubrJBhCbARIsAHIdxD_26UpMMARCL5JeXFlWDIfSA1aGgx9GtA78dLWqU0dW3s0nN_rnK30aAt-hEALw_wcB


This tracks very closely with my husband who was pre-diabetic then suddenly diabetic and 112 pounds at 5'10 and was loosing 3 pounds between appointments 10- days apart. He started insulin (essentially adult onset type 1) 2 years ago and life is wonderul now.

Was going to say, OP is known pre diabetic and hasn't necessarily made lifestyle changes. Then spent the holidays eating a lot (which who hasn't, not judging). Very well could be diabetic and that would explain the weight loss

What have your bowel movements been like? Unknown weight loss and your pancreas can go hand in hand with relation to your body digesting food. If you've noticed loose, watery, or discolored stools this is very likely the cause.

Weight loss can also be caused by new onset diabetes.

Please go to CVS tonight and get an A1C check.

https://www.cvs.com/shop/cvs-at-home-a1c-test-kit-prodid-496010?skuId=496010&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&cid=ps_dme_pla&gclsrc=aw.ds&gad_source=1&gad_campaignid=21127674858&gclid=Cj0KCQiAubrJBhCbARIsAHIdxD_26UpMMARCL5JeXFlWDIfSA1aGgx9GtA78dLWqU0dW3s0nN_rnK30aAt-hEALw_wcB


This tracks very closely with my husband who was pre-diabetic then suddenly diabetic and 112 pounds at 5'10 and was loosing 3 pounds between appointments 10- days apart. He started insulin (essentially adult onset type 1) 2 years ago and life is wonderul now.

Where are you in your cycle compared to the starting weight? I can easily have a 5 pound difference depending where I am.

Anonymous wrote:I lost a lot of weight unintentionally after being diagnosed prediabetic. It was because I started eating better and eliminated practically all junk and snack food. I could tell I was losing weight because I was hungry at night and when I woke up. Are you eating less? Or different lower calorie foods? Are you counting your calories (roughly)? If you are eating less than 2,000 per day, your weight loss is explained.

8 pounds in 10 days with no change to diet since July (plus loose stools, etc) and you're comparing it to your weight loss?

Try Inova.