Gastroparesis and Nutritional deficits and just more and more


#1

Hi I’m looking for help…Type 1 (LADA) and making a long story as short as possible due to the progressive nature of the GP consulted with Dr who all recommend a bypass to alleviate my symptoms. I had the Upper GI series (showed poor coating of the gastric musosa and delayed emptying due to GP) and then had all of my labs drawn.

OF course, everything is low or deficient…the D, B12, Folate, A, K, Iron, Iron Stat, Thiamine, Albumin, pre-albumin and more…and more…

I’ve got to get these levels up to heal properly, but my diet is so limited to the un-ending nausea and vomiting and of course my bowel is nicely involved too…as evidenced from the values above… I don’t want to ADD to my problems…

Is anyone using anything that has helped them that I can ask my Dr about?

Note: my diet is very limited and veering off it causes me digestive issue. I, usually BF: 1 egg white and half a piece of toast ( I do a real egg if I’m feeling ok that day) Snack: a very small pear or apple with a cheese stick or PB (TBS) or yoghurt (Plain with 2 tbl spoon of berries). Lunch usually 1oz chicken or tofu, a green (cooked) and starch Dinner: 2 oz protein, starch (3 marble sized potatoes) and greens and before bed a snack that is the opposite of the above.


#2

I was diagnosed with GP back in 2012. I’ve done some things that I think have helped me but I know that n=1 experimenting is not scientifically significant.

Number one, I did everything in my power to better control my blood sugar levels. I went on a lower carb diet, started walking everyday, and paid attention daily to all my diabetes data. That means I uploaded my CGM, meter, and pump into Diasend and other programs to learn about my data.

I take a pro-biotoc capsule everyday with two tablespoons of potato starch mixed into water. The potato starch consumed uncooked is a starch that passes through the small intestine and resists digestion. It ends up feeding the good gut bacteria and benefits the health of the colon. There are many studies that examined the benefit of eating potato starch as resistant starch.

My case of GP is, of course, different than yours. I can confidently say that in over four years, my symptoms have been slightly better and have not gotten any worse. I do have episodes of diarrhea but I’ve never thrown up due to GP. I’ve also been able to get by without adding any meds.

My blood glucose control took a definite turn for the better starting in 2012. I keep my blood sugar in a tighter range with few lows and less variability.

My methods may or may not help you but I don’t think any of them will cause you harm. I read Dr. Bernstein’s (long time T1D and low carb advocate) comment that he had GP and when he returned his blood sugar to normal levels the GP faded but very slowly. He says he doesn’t have any symptoms now.

I also looked to the results of the Diabetes Complications and Control Trials (DCCT) and while I know that they didn’t test the effects of better BG control on GP itself, they did find a correlation between better BGs and the arrest or reduction of symptoms relating to the eyes, kidneys, and nerve system. GP is the result of impairment of the autonomic nervous system, primarily the vagus nerve that connects the brain with the digestive organs.

I realize that GP is hard and that I have a relatively mild case but I wanted to provide you with my experience over the last several years. Good luck.


#3

Nutrition is the hardest thing to maintain when diagnosed with gp. I have gp unrelated to my type 1… nerve damage from surgery when I was 4 (I am now 31). I take the max dose of domperidone evey time I eat - I am not sure if you have access to this drug where you are and I have botox injections to my stomach sphincter every 6 months to keep my stomach open so the food can drain out. I live in Sydney and have to go to one of the biggest hospitals here as it has a great endo, gastro team.
I see a dietician regularly and one of the biggest factors is eating liquids, smoothies, youhurts, soups when your stomach is bad. Eating allot of fiber - fruits with skin or seeds and red meat, especially thick cuts can make your stomach and bowel emptying slower… even though for most people eating fiber will help them with constipation issues!
I personally dont eat breads or starchy vegies, pasta, rice etc as they hurt my stomach and make me bloated and more nauseous the next day but there are people with gp that do and feel fine. I eat yoghurt, eggs, fish, chicken, some salads and vegies but not much fruit. Crackers or biscuits and cheese and dips also seem to be ok.

I have had to have injections for low B12 and take vit D supplements and other multi vitimans.
Have you tried an antiemitics for the nausea?


#4

Wow, what an interesting thought on this…I’m going to bring it my my Dr. as I’m doing the rounds tomorrow. I guess I get kinda of cranky with them as all they seem to have to offer is eat better…HELLO, I’m severe GP with additional complications…they want to take all my food away and put me on IV feedings which is not where I personally feel comfortable as an offer treatment … I can’t eat a lot but I do enjoy being with family at the table and doing what I can…


#5

Hi Dellp,
Thanks for the advice, yes I was able to get some domperidone and it helped for a while, but eventually failed. We’ve been through every pharmacologic and naturapthic potential solutions and nothing has really helped or helped for that long…

Because my stomach isn’t working and the small bowel and colon are impacted by the GP the botox isn’t a solution my Dr. would consider.

Thanks also for the thoughtful diet tips, I do try hard to keep to the low residue…

I was told by someone yesterday if you have a group of people and they all throw their problems into a bag and you can choose, most people would choose their own problems…I wouldn’t…I really really wouldn’t…but then I would feel so guilty for the person that got GP, and all of my other complications…


#6

I have gastroparesis and celiac disease… I just recently had a small stroke which affected my swallowing reflex, so drinking and eating have become difficult. I need liquids and soft foods, several small meals daily… Does anyone have any recommendations?


#7

I have a completely different comment.

My heart, and my deep admiration go out to all of you with this condition. Frankly, it is one of the potential complications of diabetes that scares the crap out of me, and that I worry about more than most other complications.

Diabetes is already such a burden on life. Most people don’t really understand that we can’t just “live”. We have to think about how what we’re doing impacts our diabetes all the time. The biggie – we can’t just “eat” – is not something that non-diabetics really understand at all. I mean the burden, the emotional strain, etc. Regular people just pop stuff in their mouths, chew and enjoy, and swallow.

We have to THINK about everything before we put it in the maw.

So, learning from you all afflicted with GP just makes me that much more in awe of how you go forward with this day in and day out. Terry’s description of his success in managing this is inspiring – and also sobering.

Diabetes makes ordinary things that should be a pleasure, like sustenance, a chore.

My hat’s off to @Daisy_Mae, @Terry4, @Trudy1, @mskdka, and everyone else I might have missed that struggle with this. You’re all diabetic heroes, in my book.


#8

i have vague memories of enjoying the holidays and all the great food and pies. now its something i dread. i get very anxious. and i still get anxious in restaurants too.


#9

Thanks for the support. I remember the holidays with all the food…this year was hard the nausea was bad. My nutrition has fallen so low because the small bowel is involved…lucky for me I have support of family who all understand.happy holidays to all


#10

Hi I started having GP symptoms about 2 years ago after seeing 3 GI drs they never even checked me for GP. The 4th one did, thank god.

However his only suggestion was also a bypass, whIch is not reversible so I refused. What I did do is Berberine, Neem and Allicin, which I started about a month ago, it has made a world of difference. Sometimes GP can be caused by SIBO, get your doctor to check you for it. (My 4th GP would not check so I just treated myself with natual products which I read that works better than what they give you by prescription.

I also did 4 treatments of accupuncture not sure if they helped too.
My main diet with GP was mashed potatoes. And now if I eat meat I just chew it up really good and then spit it out.

I also had an adrenal gland removed before I started the GP, and it started about 6 months after the removal, I started taking my hydrocort again and no more vomitting, no more waking up in the middle of the night with my brain flipping over in my head.

I think there is a lot more to gastroparesis than, surgery, I think in my case, my low cortisol and bacterial overgrowth.
Hope this helps. Hugs
I also use sachromycees bulardi to help kill yeast overgrowth.


#11

Thanks for the ideas greatpersun,
I’ve not heard of these so I can try those out :slight_smile: I was negative for SIBO but we do treat as they do say, if not now then soon…I use the natural products. I introduced them slowly to ensure that they did no cause additional nausea. So far so good…

This week, we tried the pre and post bypass diet, to see if I could tolerate the requirements. Unfortunately most of the product they have is either sweet or so full of fiber it triggers my nausea or raises my sugar or otherwise just makes me ill (pretty bad chemical stuff). I’m down to simple foods now, just blended soups we make with added protein and vitamins, yoghurt with the same additions and I’ve managed to have dinner this week (1 oz lean protein, with 1 tbs starch and cooked veg).

ON the good side, other than being raised up (in the 200) with the product they gave me, my sugars have been excellent with my own cooking…we will see the nutritionist next week to discuss…


#12

Trudy,

I am so sorry to hear about your stroke. I have no easy solutions. Just make (or get help) large batches of soups and stews. Blending after cooking and freezing small portions might be helpful. Sounds yucky, but the taste is still good. My aunt did that after a jaw fracture and she has CD too (like me). I know that some nutritional drinks are gluten free, like Ensure.

Best wishes for your recovery.


#13

Confession: I’ve been following this topic with extra interest over the last 3 months as I’ve been struggling with a GI problem that I was really scared was going to wind up being GP.

Great news, it’s not. Turns out I have a C. diff. (Clostridium difficile) infection. Started a two-week course of antibiotics thursday, and I’m feeling much better.

Took this long to figure out because I’m one of those stubborn, ridiculous males that needs to be dragged to the doctor for anything less than a full-blown compound fracture. I do take care of my diabetes routine appointments, but when I get sick I have a bad habit of trying to “tough it out”.

Finally gave in and did the stool sample/culture routine two weeks ago (not fun, 5 different containers, 3 with strange liquid in them). This was how they found what was wrong, and what I’d been suffering (considerably) with for months.

Gut feels great today, for the first time in a long time.


#14

C. Diff, I’m going on a limb and say that I’m happy you are feeling better…still not a fun thing…really glad you don’t have GP.


#15

I’m happy to read that you got an answer to your GI upset. I came down with C-diff following a dental infection treated with clindamycin antibiotic. Before I got the C-diff diagnosis I was in a Walgreens shopping for pro-biotics to help with my GI upset. The pharmacist happened to walk by and I asked him about the pro-biotocs. Once I told him about my clindamycin course, he said I should be tested for C-diff since clindamycin use leads to an increased incidence of C-diff.

I think the whole episode from dental root canal to feeling better was about 10 weeks. It seemed to take forever! I think I had to do two courses of flagyl to treat the c-diff. C-diff is strongly associated with being in the hospital, nursing home, or other institution for the elderly. I’ve read in more recent years it’s affected younger people. As much as I hate taking antibiotics, I was truly thankful when that episode ended.

I suspect diabetics, with our periods of hyperglycemia make us more susceptible to this. Good luck shaking this tenacious bacteria. Did you know that c-diff bacteria are usually present in most people’s microbiome but it opportunistically over-runs its niche when given a chance. It’s a case of a little bit is good but more is not better.


#16

Thanks for your kind words, Terry. Doctor basically said some similar things – C. diff actually is normally part of the bowel flora, but when other “good” bacteria get knocked back by antibiotics, it can opportunistically flare up and dominate the local environment, especially in people with weakened immune systems – ding ding!

Don’t remember what might have kicked this off now nearly 3 months ago. Glad to have it resolving. 14-day course of antibiotics, and a probiotic supplement to help get the good guys back in charge.