Type 1, Celiac, Gastroporesis

I have had Type 1 for 28 years. I am 41 years old. Ten years ago I was diagnosed with gastroporesis and diabetic diahrrea. Then 4 years ago I was diagnosed with Celiac. I also have a lactose intolerance and reflux. Needless to say, there are just a TON of foods that I cannot eat. I have done very well with not eating things that I’m not supposed to. I follow a gluten free diet.
Over 2 months ago, I started having all kinds of trouble with my stomach and bowels. I was convinced it was not related to any of my issues. I went to my regular doc (not my endo or GI) office and they were convinced that it was my gall bladder. They did a slew of blood work and everything came back withing MY normal levels. They gave me Bentyl to try and help the constant diahrrea. I suffered for 6 weeks, and then everything stopped as fast as it started.

I had roughly 3 weeks of “normal.” Then 3 days ago, it all started again. During the previous incident, I systematically tried to eliminate anything that could be causing my problems. I never found any connection. I am eating the same things I have been eating for the 3 weeks that were “normal” so I can’t seem to figure out my problem.

I have never found anyone that has all these diabetes and GI issues. (I also have many other diabetes complications). I have made an appointment with my endo, but its going to be over a month before I can get into see him. I was hoping that someone on here could offer me some help.

Thanks so much!!

Hi Kimb. I have some problems that are similar to yours in that they affect digestion: Type 1, Celiac (and other food intolerances), Pernicious Anemia, and slow digestion. Potentially, there is also lactose intolerance and reflux. First of all of course is to avoid all gluten and other problematic foods (for me, gluten, soy, corn and some tree nuts). I drink my coffee half and half with skim milk (well, and I add a little dark chocolate and Spenda), but just first thing in the morning. I have to be very careful about having coffee more than once because of the reflux, so I drink Green Tea later in the day. Since the PA destroys the HCl and enzymes in your stomach, I take them in pill form (along with B12 injections). As we grow older we lose the HCl and enzymes, and if needed, taking the pills make all the difference in the world in digesting.

I have found taking a good probiotic solves the lactose problem for the most part. The probiotic also helps with all my digestive issues, from the PA to hard-to-digest veggies. Here’s how I discovered probiotics: following my taking antibiotics for an infection, I developed an awful case of C-Difficile, I really thought it was going to kill me. I read that probiotics might prevent a recurrence of the C-Diff, so I started the probiotics and have not had the C-Diff again even though I’ve taken antibiotics a couple of times since. At the same time I found, happily, that I could handle dairy again after years of avoiding it.

We’re all so individual that I don’t know if any of that helps, but I highly recommend probiotics if you are not already taking some. Good luck!

I’ve just started on probiotics. I think I’ve heard that there are different ones for different issues? I got a liquid at whole foods called acidophilus probiatic with 9 strains of Probiatics, and full amino acid profile (at least that’s what it says).

What is it that you take?

I’ve had stomach issues for years. Fullness, pain, stool problems I thought it might be a food allergy or sensitivity.

Hi Barb. I didn’t have any recommendations so I just picked up capsules from the refrigerator case at my local health food store. I’m looking at containers I used: one is Solaray’s Multidophilus Plus (“four strain formula”), the other is Nature’s Way’s Primadophilus Bifidus (Bifidobacteria & Lactobacilli). They each say they have “billions,” and seem to work equally well to keep my digestive system working. I am certain that your probiotic will have a beneficial effect for you. However, if you have a food allergy or sensitivity, you would need to omit those foods from your diet to get complete relief. By the way, I often treat lows with the liquid yogurt, DanActiv (regular, not light), which serves two purposes, raising my BG and adding some good probiotics. Best luck.

Thanks, I have deleted dairy from my diet and feel an improvement but I know there is something else. I think tomatoes, tomato sauce is another. I had a whole wheat wrap today and my stomach killed after. My daughter has a bunch of food allergies so I’m probably going to go for some testing here soon.

You may already be aware of this, but I’ll go ahead and say it: if you are going to test for Celiac Disease, you must not have eliminated it from your diet already. If you have, the result will be negative no matter what the real situation is. I’d do that testing for you and your daughter as soon as possible, because gluten does an enormous amount of damage to your body if you do have Celiac. I can’t handle soy, corn and some tree nuts either, but gluten is the biggest problem.

I see your daughter has a rather daunting list. Good idea to bring up the testing when you see your doctor; I hope the appointment goes well for you.

I have all of the problems plus the food allergies. I recently stopped eating dairy. I worry if I get any more food allergies, there won’t be anything left that I can eat.

I know it is hard to figure out which food is causing the problem but what I usually do is pick something I “think” is not causing the problem and eat that for 3 meals. I currently use Boost so I start with that and then slowly add the other foods back in. Prior to using Boost, I used Glucerna and I actually started having a problem with that.

Get tested for Pancreatic Exocrine Insufficiency, or Pancreativ Enzyme Deficiency.

What exactly are those? What symptoms do they have? I have never heard of either of those.
Thank you all for your advice. I forgot to add that I am already off dairy, pretty much all raw veggies, some fruits, and already take probiotics. Plus I follow a gluten free diet. I also take RX meds to help with my digestion related gastroporesis issues.

My reply was short before cause I was on the run but here is more info. I was diagnosed with this condition after almost 4 years of suffering from pretty much all the same syptoms you are describing. Except I do not have celiac, BUT I was originally misdiagnosed with that and many other things because my symptoms were the same. Pretty much the two main jobs that our pancreases have is to create insulin and to create and put out digestive enzymes. A person with an enzyme deficiency, does not produce or produces very little of those enzymes. Without those enzymes, food sits in the stomach and intestines and does not actually absorb into the body properly, this can cause chronic inflamation of the stomach and intestinal lining, which is why it is often misdiagnosed as other conditions. The treatment for this is a pancreatic enzyme supplement. You can get them at most health food stores or a RX version from your doctor. I live in canada and none of the doctors here could figure out why I was so sick, and I went to both Sick Childrens Hospital, and MacMaster Hosptial, and they are both world renouned for their diagnostic abilities. It was not until I was by chance put into contact with a doctor in India, who then told me of this condition. I was on 9 different medications for digestion and nausea, Within four days of being on the enzyme supplement I was off all of them. I do not want to make this out to be a miracle cure, because everyone is different, but I hope you find the relief you need, because I know first hand what it is like to live with symptoms such as these. It is horrible and debilatating and doctors only want to throw more band-aids and drugs at the problem instead of taking the trouble to get to the core issue. Good luck!

Im sorry for you, that sucks. The only thing you can do to find out what your eating thats bothering you is to start with a B.R.A.T.(bananas, rice, applesauce, and toast-gluten free). Ever so slowly add one new type of food at a time and see if that help.

Ive been Type I and Celiac for what seems forever and my stomach does the same sometimes.

Bananas aren’t good for someone with gastroparesis.

I have Pernicious Anemia, which destroys the HCl and enzymes in your stomach, and which absolutely requires an HCl-enzyme supplement. Supplements are available in my local health food store. I happen to prefer Lifetime Enzymes Complete Enzyme Formula, because it comes in pills that I can chop up for small snacks, small meals, and not overdose myself with the acid. You can get the supplements with or without the acid of course. As people grow older, they often lose or make less of their acid/enzymes and can benefit from a supplement. I’m more careful about carrying some of these pills with me when I leave home than I am with my insulin!

You guys have me curious now. Are there tests to know if you need to take the enzymes or is it something to just try? I have all kinds of stomach issues so am wondering if I should just go ahead & order them.

Hi Kelly, I honestly don’t know what tests are done for this problem. Since it’s well known that people with PA need the HCl/enzymes, I was advised to take them at diagnosis.

Thanks Trudy. I need to make an appointment with a gastroenterologist anyway and I was just wondering if that was one of those things I should wait on taking.

Apparently the only tests available are a three day stool sample test and a two day urine collection test. But apparently these tests are unreliable, and often give inconclusive results. So often people just try the pills and if they work, than great! The great thing about these pills is that they are natural and almost everyone can benefit from taking them, not just those with a deficiency. My boyfriend takes them on occasion if he goes out for pizza and wings, and he gets no stomach ache after eating! If you google “type 1 diabetes and enzyme deficiency” there are some pretty interesting medical journals and articles out there saying that it is suspected that many stomach issues of type 1 diabetics are misdiagnosed, and it is in fact this enzyme deficiency that is causing issues.

Thanks Rebecca. I guess i need to order some and see if it helps. It certainly won’t hurt!