My rather long story. Wondering what people think.

[Scott13]

Hi, friends. I'm going to write my fairly long story about strange digestive symptoms I've had. There's a lot to this so please hang in there. I appriciate any feedback I can get. The reason I'm here is that searching through forum posts I've managed to find people with basically the same symptoms I have and have had which I can't really find a ton of information on elsewhere.

To start, I'm 26 years old, a male, and a type 1 diabetic. My a1c's are in the mid to high 6's and have been most of my life, I do take good care of it as I've had it for half my life. Around a year and a half ago I developed a weird habit of burping pretty frequently, something I basically never, ever did before I was ~24 years old. Also accompanying it was that strange "lump in my throat" feeling, where it kinda feels like you have chewed food in your throat. Maybe notably, I did *not* have acid reflux to speak of, and things like laying down actually lessened the burping, not increased it. Expanding my diagphram basically always resulted in an overwhelming urge to burp. At the time I was drinking far, far more caffinated soda (coke zero in specific) than anybody ever should, and I just chalked it up to that. Eventually it got so frequent and obnoxious I cut the soda entirely. I have not had anything caffinated in over a year now.

The problem was, the burping didn't go away. In fact, it got worse. In September of last year it got so frequent and bad I couldn't sleep, could barely finish a sentence. I live in a very remote area in west texas and medical availability isn't great, but I got in to see a doctor finally who put a scope in my stomach and found I had a patch of gastritis, near the top of my stomach, which has frequent burping as a symptom. They put me on protonix and carafate for about ~3 months as I recall, and the burping lessened, though it never really fully went away, it wasn't so much so that I couldn't do things like sleep, or talk. I chalked it up as one of those things that happens, figured the silly amount of caffine I was stupidly drinking for most of my life did it to me, and didn't really think anything of it...

Until it came right back about two weeks ago. It's not as bad as in September, at all, but it's not good either. I constantly feel like I have a blob of something in my lower esophagus, kinda like right at the base of my neck, that whole "chewed food" feeling. This time some acid reflux *did* occur, and the burping is more frequent but not frequent to the point that I can't function (yet, and I'm hoping to keep it from getting that way). If i want to, I can, without swallowing once, burp 6-7 times in a row. The urge is basically always there, though it isn't extremely overpowering like it was before. I should also note that this time, unlike last time, I've been having very loose, kinda orangey-yellow stool for a few weeks, something that also just kinda happened occasionally before and I never gave it much thought. From what I've read that's also a gluten intolerance sign?

MEANWHILE, my dad, who's never been much of a health nut himself and has always been quite overweight, was forced to lose some weight at around the same time as I got the gastritis due to an upcoming surgery. My father was a two prilosec a day guy for basically his whole life, he got acid reflux (not burping, but I think they're related?) so often and badly. I didn't really think much of this at the time, but he went on a diet where he basically cut most carbs out of his life completely for the past ~8 months (something he was long overdue for, and that did result in him losing quite a bit of weight). He mentioned to me that most of what he had to cut was wheat and bread (of which he's always been a fan), and that he noticed that around two or three months after he stopped eating it, the acid reflux went away, something he had been putting up with for so long he just figured he was stuck with it his whole life.

Also of note, my mother has told me the handful of times he's "cheated" and eaten bread in the past few months, he has had to take prilosec again. This tells me that while he might not be allergic, he may have some kind of mild intolerance to it? I'm not well versed in this.

SO. I kind of started connecting the dots for why all this is and figured I'd try going gluten free. It being March recently and the fact that every hospital in my area has been closed due to the covid thing, I haven't been able to go see a doctor again and odds are they'll be backed up for a while from the month of no patients.

It's been about 5 days since I cut gluten. I can't say I've noticed any perceptible change yet, but that's normal, right? Like it takes a while for it to leave your system? I've been eating... well, not much, but the few things I have been eating have been things like rice, turkey, grapes, applesauce, and other pretty simple foods. I started doing this because on Sunday I had some pizza and noticed feeling really, really bad after eating it.

What I also HAVE managed to do is get some more protonix and carafate from my pharmacy, I've been taking those for the past three days now because I don't figure it can hurt. I am having acid reflux this time (and was for a few days before I noticed the symptoms coming back in full force) so I figure the worst it can do is stop irritating my throat.

I've also started keeping detailed logs on exactly what I've been eating and how I've felt afterwards. So far the two things I've eaten that have made me feel noticably worse was soy sauce (on the rice), something i tried twice and felt bad both times, and some salt+vinegar chips that I got expressly because they were gluten free. This made me think either A) I might have a soy allergy as well, and B) that I should probably just not eat anything processed for a while, if indefinately.

My apologies for how long this story has been. I'm basically flying blind here and my odds of getting in to see a doctor any time soon are pretty low so I'm trying to just not feel miserable in the meantime. Does all this kind of make sense? Like does it seem like I'm doing a reasonable thing? Do all these symptoms sound gluten-related?

I've generally been told by everyone my whole life that being a diabetic makes my odds of food-related allergies go up massively (in addition to your odds of developing basically any type of illness). I am pretty well controlled on it and I should also maybe note that my blood sugars have been... basically fine throughout this whole thing, nothing really out of the ordinary at all even in September when I was feeling sick. I wear a continuous glucose monitor so I can see that when I'm eating, my blood sugars raise a normal amount of time after I've eaten, so it would seem I'm at least digesting things and getting sugar from food like normal.

So. The too long, didn't read, Scott's too rambley version: I burp way more often than is normal. I had gastritis, then thought it was cured, then similar symptoms plus some other stuff came right back. I have a weird lump in my throat basically constantly that seems to get worse and better depending on what I eat. I had acid reflux, and am currently taking PPI's to try to tame that. I am a diabetic so am at higher risk of basically everything. My father had a bad reaction to wheat, then cut wheat, and his acid reflux went away.

So yeah. You guys' thoughts? most of you seem pretty well versed on this sort of thing and I'm really honestly not. I figure it's gas, it has to come from somewhere, and a bad reaction to food I'm putting in my stomach must be it at this point. Since it's basically always there it has to be something I eat all the time, which I've narrowed down to wheat (in everything), soy (in everything), and dairy. I should also mention I very, very rarely eat anything dairy in the first place and cut it entirely back in september and didn't really notice any difference, so I don't think it's that.

I'm all ears for suggestions/comments/questions/etc. Diabetes, for as much as I loathe having it, is the devil I know, and I've gotten pretty good at making it do what I want over the years. This thing I have no idea what's happening to me but boy some of it's sounding gluten related.

Thank you all very much for sticking with me!

-Scott

 

[rehh05]

Well, sounds like you if something works for you, then keep doing it... 

but, one thing struck me.

you described the feeling of having a lump in your throat. That is something that folks with thyroid problems sometimes feel... and having a swollen thyroid or nodules can affect swallowing... which can make one swallow more air. 
 

just a thought... something other than diet to think about. 
 

There are thyroid problems that do go hand in hand with type 1 diabetes, although more common in women. It’s the autoimmune thing. 
 

but it also could be something other than gluten that you are eating. Dr. Google is a scary place to consult but it sounds like you don’t have many real life resources. 
 

and if I were you I’d get back to a doctor ASAP

[cyclinglady]

Did you know that Type 1 Diabetes, Hashimoto’s Thyroiditis and celiac disease are strongly linked?  (Same genes.)  In fact, your endo should be screening you for celiac disease, even if you are symptom free and you have symptoms.  It certainly sounds like your Dad has celiac disease.  If he does have it, your risk is 44%.  Sounds like T1D was the first to pop up.  

https://gluten.org/2019/10/17/diabetes-and-celiac-disease/

Is your acid reflux, indigestion related to celiac disease?  Maybe.  It can also be due to Autoimmune Gastritis.  I have this condition, found after my celiac disease diagnosis.  It can be diagnosed via gastric biopsies and affects the upper part of the stomach (fungus).  There are also some antibody testing that can be done as well.  This condition leads to iron and B-12 deficiencies.  The Autoimmune response starts attacking the lining of your stomach.  It actually lowers your stomach acid.  Taking acid reducers can make it much worse.  It is hard to digest food when you do not have stomach acid.  Plus, you have T1D which can lead to gastroparesis (delayed stomach emptying).  Find out what kind of Gastritis you have (like it could be due to H.Pylori or EOE).  

Others have temporary acid reflux due to celiac disease.  Once you heal from celiac disease, so does your stomach.  Celiac disease is systemic. It can attack any organ (pancreas, gallbladder, liver, skin, brain, joints, etc) in your body though primarily causes malnutrition/small intestinal.  damage.  

You can go gluten free, but know it will cause all celiac disease testing to be negative (except for genetic, but you know you have the risk of developing celiac disease because you have T1D so that would be a waste of money/testing.  Besides, 35% of the population carries these genes).  If you choose to get tested, make sure you consume a slice of bread daily 6 to 12 weeks daily (2 to 4 if going directly to endoscopy).  

What to do?  Keep researching.  I am not going to tell you what course of action to take.  But I can  offer personal experience tips and share my story.  

Did I mention my doctor thought I had LADA (T1D)?  Turns out I am a thin diabetic (insulin resistant).  You can develop autoimmune disease or multiple autoimmune diseases at anytime in your life.  My autoimmune gastritis seems to be linked to my Hashimoto’s.  Both flare up when my celiac disease flares up.  So I am very careful about avoiding gluten.  

BTW, soy sauce contains gluten (wheat).  Here is a gluten-free version though.   Learn all that you can about the gluten-free diet.  

Edited May 2, 2020 by cyclinglady

[Scott13]

1 hour ago, cyclinglady said:

Did you know that Type 1 Diabetes, Hashimoto’s Thyroiditis and celiac disease are strongly linked?  (Same genes.)  In fact, your endo should be screening you for celiac disease, even if you are symptom free and you have symptoms.  It certainly sounds like your Dad has celiac disease.  If he does have it, your risk is 44%.  Sounds like T1D was the first to pop up.  

https://gluten.org/2019/10/17/diabetes-and-celiac-disease/

Is your acid reflux, indigestion related to celiac disease?  Maybe.  It can also be due to Autoimmune Gastritis.  I have this condition, found after my celiac disease diagnosis.  It can be diagnosed via gastric biopsies and affects the upper part of the stomach (fungus).  There are also some antibody testing that can be done as well.  This condition leads to iron and B-12 deficiencies.  The Autoimmune response starts attacking the lining of your stomach.  It actually lowers your stomach acid.  Taking acid reducers can make it much worse.  It is hard to digest food when you do not have stomach acid.  Plus, you have T1D which can lead to gastroparesis (delayed stomach emptying).  Find out what kind of Gastritis you have (like it could be due to H.Pylori or EOE).  

Others have temporary acid reflux due to celiac disease.  Once you heal from celiac disease, so does your stomach.  Celiac disease is systemic. It can attack any organ (pancreas, gallbladder, liver, skin, brain, joints, etc) in your body though primarily causes malnutrition/small intestinal.  damage.  

You can go gluten free, but know it will cause all celiac disease testing to be negative (except for genetic, but you know you have the risk of developing celiac disease because you have T1D so that would be a waste of money/testing.  Besides, 35% of the population carries these genes).  If you choose to get tested, make sure you consume a slice of bread daily 6 to 12 weeks daily (2 to 4 if going directly to endoscopy).  

What to do?  Keep researching.  I am not going to tell you what course of action to take.  But I can  offer personal experience tips and share my story.  

Did I mention my doctor thought I had LADA (T1D)?  Turns out I am a thin diabetic (insulin resistant).  You can develop autoimmune disease or multiple autoimmune diseases at anytime in your life.  My autoimmune gastritis seems to be linked to my Hashimoto’s.  Both flare up when my celiac disease flares up.  So I am very careful about avoiding gluten.  

BTW, soy sauce contains gluten (wheat).  Here is a gluten-free version though.   Learn all that you can about the gluten-free diet.  

First of all, thank you very much for your response. Lots to think about. Here's my responses:

Back in September when I had the gastritis they did take a sample and found I do not in fact have H. Pylori, and I highly doubt I got it between then and now so I don't think it's that. I have heard that T1D is related to celeac which is why I'm figuring I can try to cut it to see if that improves things any. The fact that I'm 90 percent certain my dad has it and that I'm a type one diabetic makes me think my odds of having celiac are pretty good, which is what brings me here. That said obviously it's just a guess.

Interesting to hear about the autoimmune gastritis thing. I didn't know about all of that. I'll definately bring that up with a doctor. It sounds like that actually can be controlled, though? Like if that is what it is, you can do something about it?

I will say, I wear a Dexcom continuous glucose monitor and when I eat food it does in fact make my blood sugar go up within ~30 minutes of eating it, so I do appear to be digesting. Now if I'm digesting normally is a question certainly but digestion is at least taking place. I assume an iron/B12 deficiency is something a blood test can test you for? That seems easy enough to get done and rule out if so.

Another thought is what in September when I had my first rumble with this I was taking protonix for the better part of three months and I never really noticed myself feeling *worse*. Maybe not "as better as I'd have liked" but I certainly didn't feel worse for taking it. That said, again, that's about as unscientific of a metric as you can get so it's certainly worth asking about.

Back in September I know the surgeon that put the scope in me looked for signs of gastroparesis and pretty much ruled that one out. Since when I eat something, my blood sugar goes up and I have to take insulin beforehand like normal it would seem my digestion is at least occuring. Again, no idea if it's occuring on time or normally but it is at least happening, and I generally hear gastroparesis happens mostly in people that have much more uncontrolled blood sugars than I do. In my case a sugar level of 200 is a very rare high blood sugar to have.

I actually got gluten-free soy sauce specifically for that reason, and it wound up making me not feel so great, which is why I'm wondering if it could be that, or both, or something. By the sounds of things if you're allergic to one thing it's easier to be allergic to another. That said, I honestly have no idea and am just spitballing things. I'm mainly trying to make myself less miserable while I wait to see what if anything a doctor can tell me.

2 hours ago, rehh05 said:

Well, sounds like you if something works for you, then keep doing it... 

but, one thing struck me.

you described the feeling of having a lump in your throat. That is something that folks with thyroid problems sometimes feel... and having a swollen thyroid or nodules can affect swallowing... which can make one swallow more air. 
 

just a thought... something other than diet to think about. 
 

There are thyroid problems that do go hand in hand with type 1 diabetes, although more common in women. It’s the autoimmune thing. 
 

but it also could be something other than gluten that you are eating. Dr. Google is a scary place to consult but it sounds like you don’t have many real life resources. 
 

and if I were you I’d get back to a doctor ASAP

I can swallow okay, it just occasionally (not always) have that kinda "unchewed food stuck at the base of my throat" feeling lately. I'll definately bring that up with my doctor. I assume that's also something a blood test or examination can check for or is that a "we have to cut you open" kinda thing? I do swallow a lot, just in general, for whatever reason, always have basically my whole life, which I know isn't great for making you not burp. That said, I really am burping frequently and hard enough that I highly doubt that's it. I can keep burping over and over without swallowing.

And yeah, Dr. Google's no good, which is why I'm trying to hear from people that have actually lived similar things. These are all great suggestions. I'm compiling a list of stuff to ask my doctor about whenever I can see him again. I am absolutely planning on calling around on monday. I'm sure some GI doc somewhere can see me, my fear is it's just gonna be a while.

 

I guess my biggest fear is just that I'll get a "dude I don't know" from the doctor when I do see them, because they were all pretty certain last time it was just gastritis and that was that. I know occam's razor being what it is the general response of the medical field is to pick the simplest, most likely solution to something, so you know. Trying to think of things ahead of time I guess.

 

Thank you both for replying, I really do appriciate it!

[Posterboy]

6 hours ago, Scott13 said:

So. The too long, didn't read, Scott's too rambley version

56 minutes ago, Scott13 said:

Back in September when I had the gastritis they did take a sample and found I do not in fact have H. Pylori, and I highly doubt I got it between then and now so I don't think it's that.

Scott13,

Going low CARB helps heartburn because they ferment...

Most people who end up having heartburn usually it is from too little stomach acid...

I tend to ramble myself....nice to find another one still exists...

But I will try  and keep it short(er) than normal....you can search for the Posterboy on here and I have several rambely replys...search for heartburn on celiac.com and many threads will come up.

Low stomach acid has now been associated with the H. Plyori and probably the ulcer you know have...

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

But doctors still treat it like it is too high instead....

Use the baking soda test to determine if your stomach acid is really too high or really too low.....this article explains it well...

https://drjockers.com/5-ways-test-stomach-acid-levels/

Also see this 3 part series from Chris Kresser about what everybody ought to know about GERD/Heartburn and don't...and or Low stomach acid....

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

Here is a case report of someone using BetaineHCL (powdered stomach acid) to treat their many years of GI problems...entitled

"Nutritional Interventions for Gastroesophageal Reflux, Irritable Bowel Syndrome, and Hypochlorhydria: A Case Report"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/

Special Note: on taking BetaineHCL  ALWAYS take it with a couple glasses of water/ or another favorite liquid and ALWAYS with a meal...I would try 3 or 4 pills/capsules in the beginning because more is better usually  than less or it was for me....then you cut back overtime...

I have taken it the past myself and do not take it now because my stomach acid has returned to a  normal healthy level....

If it improves your heartburn...you have found your problem....

Here is a posterboy blog post I wrote about it....

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

I hope this is helpful but it is not medical advise...

Posterboy,

ETA: If you like long and rambley you will like it...I had a lot of ground to cover

Edited May 2, 2020 by Posterboy
Added ETA If you like long and rambley you will like it

[Angela A]

Scott, 

Have you tried looking into the Auto-Immune Paleo Diet? Our functional med doc recently tested me for celiac genes, a wheat zoomer panel, and food sensitivity. I have had bouts of horrible pain (felt like a screw driver through my belly button and someone twisting it) and diarrhea over the past fives years, and it turns out I have both the DQ2 and DQ8 genes for celiac. There are a host of other things I have going on including very low vitamin D, low zinc, pre-hashimotos/thyroid dysfunction, I do not methylate vitamin B, low iron, and high intestinal permeability (leaky gut). He put me on the AIP diet and we removed any healthy foods on the list out that my antibodies tested high to. My body was thinking that healthy foods like asparagus were bad and my body reacts to them. I am only about a week and a half into this, but I feel a lot better and bloating has subsided quite a bit.

Just a thought that maybe the AIP might help you and your father until you can see a doctor again.