Gastroperisis at 8 with Type 1

My daughter was diagnosed with Type 1 in January 2022. We discovered it early so she was not in DKA. She is 8. The crazy thing is she started getting very nauseas and complained of fullness. We did an X-ray and her stomach was emptying VERY slowly. They prescribed her erythromycin 3 times a day before meals. Her endo says she has not seem a patient that young with gastroperisis. She did test negative for celiacs. Her endo also said she does not think gastroperisis is associated with her type 1 because it would be too early. I am at a loss, how could this happen? It has been a roller coaster treating both at a young age for her. Anyone heard of this and what is your advice?

People get gastroparesis that don’t have diabetes. Diabetics are susceptible at a much higher rate than people that don’t have diabetes. I believe it’s also more likely to happen after you’ve been a diabetic for a certain amount of time. I would assume that is why her endo doesn’t think it’s diabetes related. I don’t believe they actually know for certain what causes it to happen. So I’m not sure you’ll get an answer as to why.

You could try a children’s hospital to see if they might have more information on it in young kids? Maybe a kids gastroenterologist?

The problem with type 1 diabetics is it makes it a lot more difficult to manage blood sugars levels. Since the stomach empties slower, you might need insulin later, but how much? And sometimes the stomach doesn’t take as long to empty. It definitely makes it more difficult to manage.

If you don’t have her on a Dexcom with the alarms, get one ASAP. Dexcom also has a share ap so you can keep track of her blood sugar levels wherever she is.

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Thank you for your response. She is on a Dexcom and an omnipod pump. She has a gastro appt in a week. I just wish I could heal this gastro problem. Having diabetes is enough for her :slightly_frowning_face:

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I had gastroparesis for a number of years after I got Type 1 and it went away. I do not know why I had it or why it went away.
I suspect anxiety played a role.

You should definitely look into all the possibilities of what’s going on, but it might be worth putting anxiety on the table as one of many possibilities even if your daughter doesn’t talk about being afraid of her diagnosis.

I have a daughter who has a learning difference. When she was in a general ed school in third grade she seemed happy, well adjusted and all her teachers praised her. She had lots of friends. We switched her to a school that specializes in learning differences in fourth grade and, after she had been at her new school for a few months, she started talking about how anxious she had been and how much she hadn’t understood at her old school and how much she hated feeling different. We knew she had a learning difference in third grade, but we didn’t really know how it had been affecting her emotionally. She really covered it up.

I obviously know nothing about your daughter, but I was surprised by how much my own daughter at a young age kept things inside and wanted to fit in and be perceived as good and happy. To be clear, she actually was both good and happy, she was just covering up that, at the same time, she was very nervous about being different. There’s a pretty good kids book about this called Double-Dip Feelings.

My daughter is not diabetic. I’m the type 1 diabetic in the family.
I experienced gastroparesis but it remains a mystery to me why I had it or why it went away. Hopefully parents on this forum will have more insight into how being diagnosed with Type 1 affected their kids emotionally at different ages.

I’m so sorry about what you’re going through. I feel lucky that I’m the one with diabetes rather than my daughter. I hope the gastroparesis goes away. I think your endo is absolutely right that it is not directly a complication of diabetes in terms of nerve damage given that your daughter is just in the first months of being diabetic and if she were ever to have any complications of that kind they are many years in the future and, with any luck, will never happen.

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Thank you so much for this reply, it gives me a great deal of hope! I will definitely look into anxiety that could be playing a role.

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@ChloesMom Like @Tnyc, I’m also a former gastroparesis sufferer. It developed rapidly in the mid-80’s following 20 years of (type 1) diabetes.

I was put on Cisapride (propulsid) for several years until they pulled it from the market over concerns of serious cardiac events.

I can’t remember what drug they replaced it with, only that it didn’t work as well and I was reluctant to take it. I ate nothing with fibre in it for 4 or 5 years and almost magically the condition resolved itself - I’ve had no problems ever since :hugs:

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Great! This is giving me hope!

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How did you realize you had gastroparesis?

(Maddie, Diagnosed at 9 y/o living w Type 1 for 15 years)
I recently had a very hard time emptying my bowels. It was a problem for a few years and it caused me a lot of distress and confusion because I thought I was too young to get gastroparesis. I also was very uncomfortable for me often and I was always bloated. I recently changed my diet to try and it helped a lot. Mainly smaller meals and taking longer breaks in between eating to give my stomach more time to digest. I also took insulin a little further after I ate rather than before because I noticed that my blood sugar wouldn’t spike until later. I noticed once I took insulin my stomach started to digest easier. I also began balancing my macros (Protein fats and carbs) and eating more fiber and drinking kombucha and yogurt daily to try and supplement my stomach with the digestive bacteria. Now I release everything normally. Highly suggest the kombucha and waiting longer between meals.

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I get gastro paresis from meds. Esp any stomach meds like pepto B or even tums or any of the acid reducers.
When you have actual real life gastro paresis, a complication from diabetes, it’s because the nerves that tell your stomach when to empty and your bowels to move, get damaged from high sugars just like other neuropathies. The best way to heal from it is to tightly control your blood sugar for the long run not just for a short time. Nerves take 3 months to heal.
You might just have normal bloating from any number of reasons. Or it could be GP.

I do intermittent fasting. On weekends I eat only one meal a day. This gives my entire digestive track a chance to completely empty and reset.
I didn’t think I could fast as a type 1, but strangely enough my sugars are stellar and even when I exercise, I still don’t crash.
I do have a pump and it might be helping me fast longer.
I would rule out diet issues and medications first and like all of us, keep yourself in range as much as you can. I have a pump as I said and I can keep in the high 90s% in range. Some do as well or better on injections, but it was difficult for me when I was on injections.
I hate to try to convince anyone about diets but I had my eyes opened when I tried a plant based diet although I’m not totally vegan, I follow it 90% of the time and it has a lot of benefits.
Mastering Diabetes, it’s not for everyone, but I’ve been on it almost 2 years now.

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@Timothy ,
When you describe tight control of BG, what numbers are you talking about? I just got my new Medtronuc 780G and have high hopes it will help me. My diet is super tight. Exercise on daily schedule……i’m desperate to do everything I can.

What I mean is staying in the normal range of 60-150 90% of the time. Some people use 160-170 but 170 is much higher than normal blood sugars which don’t go above 130 for non diabetic people.

Nerves take 3 months to heal, so if you can keep tight control for 3 months you should get healing and normal function of the damaged nerves

For many years I just ate what I ate and learned how to chase it with insulin. If we can try to look at food as a fuel instead of an activity or as a reward, then we can figure out ways to keep out blood sugars in check.

There was a time I would eat all the fake sugar stuff and the artificial sweeteners. It’s really not a plan that works well and it’s not sustainable.

Even non diabetics can’t just eat anything, everyone needs to look at out food and make good decisions. As diabetics we JP have this anchor around our necks that makes it tougher but it’s doable

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@Timothy , I’m following up with this issue to get your input.

I had always thought Gastroparesis was permanent, but I’m not that familiar with it, I suffered severe constipation for over a year and the only way I would go at all was a big glass of Metamucil and a glass of Miralax. PLUS, lots of water, veggies, beans, fresh fruit, etc. Consulted with primary and Gastroenterologist. They weren’t sure of the cause. IBS? I never had nausea, pain or fullness. Gastroenterologist just prescribed me a pill, but I haven’t taken them.

Last week, I realized I didn’t need the Miralax. Now, I’m only drinking a small glass of Metamucil and fiber rich diet. Average water. I actually started feeling my gut working. It makes digestion sounds I hadn’t heard in a while. Things are much closer to normal. I can barely believe it! My BG control is only slightly better than it was when the constipation started. I’m so curious as to what happened. Oh, my pins and needles feeling in feet and hands is almost gone too! So bizarre. I was diagnosed with post covid syndrome and anxiety.

Just wondered what you thought.

Gastroparesis is caused by neuropathy of the Vegas nerve and the nerves in the colon. They tell your stomach when to empty and sets the time it or your bowels to move.

When the nerves are subjected to chronic acidic situations as is common in people with uncontrolled blood sugars the sheath around the nerves will wear away and then the nerves will either stop working or start being erratic. In the extremities it can often result in nerve pain.

If you tighten up your control, your nerves will heal. Then the symptoms will go away, but it takes up to 3 months for nerves to heal, but it’s doable with some tight control.

Strange thing with gastro paresis is thst I get the symptoms of it if I take any sort of stomach remedies even antacid causes delayed stomach emptying and constipation.

I don’t really understand that whole thing, but I do know that others things other than diabetes can be causing gastroparesis.

If you have it due to diabetes, it means your control is probably not very good, and the really dangerous side effects come nets, like kidney failure and blindness. So it’s a wake up call to get your numbers in line as best as you can.

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@Timothy ,
I’ve been struggling with IBS Constipation for over a year. Since Dec. I had to return to the Miralax, plus Metamucil . I’ve asked the two gastroenterologists I’ve seen about Gastroparesis and they say that’s not what I have. As a long time type one, I wonder. My BG is now much improved and based on my CGM now around 6.6, Down from 7.5 in Dec,