Lab tests indicate that I have autoimmune gastritis in addition to Type 1 diabetes. There are signs of Hashimoto’s as well. Celiac tests are not yet available.
This … is awful. I know that many people live complication-free with Hashimoto’s once the dosage is right. But, autoimmune gastritis is associated with a significant increase in risk for stomach cancer. And, having 3 autoimmune diseases, I fear the risk of getting more is further increased. I feel like this is the end, that I’ll never get back to being able to enjoy life, that my fate is sealed and soon my ■■■■■■ immune system will kill me off slowly. Who knows, maybe it will attack my liver next…
Sorry, I feel so down right now
Any of you live with these autoimmune diseases, especially the autoimmune gastritis one? How bad is it?
I have crohn’s, autoimmune arthritis (AS), and lastly I also have liver disease (primary sclerosing colangitis). I was just dx with 1.5 this past May. TBH, the diabetes is making everything harder. However the depression came with the diagnosis of PSC was the worst. My liver is doing so much better now, but at dx, it was looking bad. Still scares the crap out of me (admittedly, that is a lot easier with the crohn’s).
Right now, I’m a bit depressed because my crohn’s is acting up. Most of my tried and true remedies for this make my BS soar. Hell snacks are hard right now, because, again, when my tummy is upset, I love nothing more than crackers or tortillas. Also when I’m flaring it gets harder to control my BS numbers (it seems they increase when you’d think they go the opposite way seeing as most of my food has less than 4 hrs transit time). So I have to take insulin just for a stupid small snack.
I’m not sure I’m any help, but just wanted you to know you are not alone.
I have had Type 1 for 25 years and possibly Spondylitis like Jenn for about 10 years. Right now they have just said Autoimmune Inflammatory Arthritis. But for years I was told possibly Fibromyalgia. The harder parts for me is knowing something is off in my body and doctors not being able to figure it out. I have had a lot of doctors blame medical issues on the Diabetes. I don’t have autoimmune Gastritis but recently when being evaluated for Crohn’s I was told I have Gastritis and cell changes that were precancerous (not Cancer though), plus inflammation in multiple areas of my digestive system. I didn’t even know there was an Autoimmune Gastritis. That’s crazy. I’m not sure what is causing the inflammation in my digestive system though. Nothing concrete has showed on my tests.
I’m not sure if my symptoms are from Gastritis but I have a lot of nausea and no appetite. I feel sick a lot too. So I try to just eat things that don’t aggravate my nausea. When I recently had an endoscopy part of the prep I had to do was not eat for a few days. I couldn’t believe how much better I felt. My blood sugar was so stable and I was drinking juice and eating popsciles. Lol. There is definitely something going on with my digestive system. Have they talked about treatment for it? I know with the cells they found in my stomach they just have to do another upper endoscopy in 3 years to recheck.
We definitely know how you feel though with multiple AI. You kind of have to look for the good in it and try not to let it get you down. There are always new things coming out to help people with issues like Type 1.
I’ve had type 1 diabetes for 36 years. I had severe nausea off and on for about 16 years, multiple tests and multiple doctors. 1 primary care doctor said it was probably gastroparesis because I had had diabetes for so long and said just take Reglan and see if it works. I don’t have gastroparesis but because I took the Reglan for so long before he tested now my body waits an hour after I eat before I start to digest. But then digests normally.
The last gastroenterologist said it was all in my head. I went to a new primary care doctor a year ago who said " you’re going to think I’m crazy but hear me out".
She told me to try going gluten-free and see what happens. Apparently, I have a gluten sensitivity and once I figured that out and stopped eating gluten, I no longer have severe nausea all the time. It was amazing to go awhile without nausea, so now I won’t eat anything unless it’s guaranteed gluten free.
Just a thought to keep in mind. There’s no test for gluten sensitivity like there is for celiac’s, just have to go without gluten and see what happens.
That was good you found another doctor. Yeah I started having issues with really bad fatigue and problems walking last year. My Endocrinologist wanted to run a bunch of blood tests and didn’t find much. When I mentioned I was too tired to do anything she told me to maybe see a psychiatrist which was frustrating. Lol. Then a few months later I was diagnosed with Inflammatory Arthritis/Spondylarthitis. So some doctors just don’t know how to handle things. Needless to say I don’t mention any of my issues to that doctor now. My primary doctor is very understanding though and helped me figure things by referring me to the right doctor. I’ve actually been thinking about food allergy testing since I have a lot of seasonal allergies. I do have a lot of issues with inflammation so I wonder if some issues could be because of the inflammation in my stomach.
Going gluten free or trying the AIP diet (Autoimmune Protocol) might be a great idea, BUT I strongly urge you to rule out celiac disease first, since it is strongly linked to TD1 and Hashimoto’s.
I am a TD2, but have Hashimoto’s, Celiac Disease, and was recently diagnosed with Chronic Autoimmune Gastritis. My celiac disease is in complete remission due to a very strict gluten free diet that does not include a lot of processed gluten free food and avoids other food intolerances (e.g. garlic), but a recent follow-up endoscopy revealed the gastritis.
It can be very depressing to have to deal with three autoimmune disorders or more. I get it!
My Gastritis seems to be in remission now. I think that when one autoimmune disorder flares, they all flare. So, managing my celiac disease helps my other AI disorders (measured by symptom reduction and lower antibodies).
There was a recent tiny study about the AIP diet done by Scripps in San Diego. They tested IBD patients (Crohn’s and Ulcerative Colitis). Patients did not change their medication treatments. Six weeks later, over 70 achieved complete remission as measured by lab results. Amazing!
Diets are not a “one size fits all”, but a modified AI diet might be beneficial and at least worth trying. It certainly can not harm if followed properly (eliminating foods for a brief time as to not impact good nutrition).
Interesting. I wonder if the AIP diet could also prolong honeymoon.
Celiac disease has been ruled out so far, since the relevant antibodies were not present in the blood sample. Nevertheless, the predisposition might be there. The endo recommended a DNA analysis in the near future to see what I am prone to get.
What kind of lab tests? Just bloodwork? To confirm autoimmune gastritis, you should have had biopsies (obtained via endoscopy) reviewed by a pathologist.
Going back to celiac disease. There are several antibodies tests for it. You should confirm that you had all of them. Why? I only test positive to the DGP IgA and never to the more commonly used screening TTG (IgA and IgG). If my doctor had not run the complete panel, my diagnosis would have been missed. Not to mention that about 10% of celiacs do not test positive to any antibodies (just like some TD1s do not test positive to antibodies). In addition to testing for gliadin antibodies, celiac disease requires biopsies obtained through endoscopy. It is the gold standard that is still in effect by all leading celiac centers worldwide.
Genetic testing? It will help rule out celiac disease and not diagnose it. That is because some 30% of the population carries the genes, but only a few actually develop it.
Consider getting copies of your tests and confirm if you actually had an entire celiac blood panel. If Hashimoto’s is suspected, antibodies screening for thyroid should be done). Consider seeing a Gastroenterologist, if you have not.
I will actually get a gastroscopy done via endoscopy due to the strong suspicion of autoimmune gastritis (I mean, it is all but certain at this point, but we still need to see how things look like in there), including a biopsy.
I actually got the transglutaminase IgA checked, and it was 0.3, way below the 7.0 threshold. I’ll mention DGP though.
As for Hashimoto’s, this one is confirmed, unfortunately. TPO antibody levels are high, TSH is high normal, FT3 and FT4 are still normal but in the lower range, and sonography showed tissue inflammation.
My problems started when was on a high blood pressure medicine about 6-7 yrs ago that started the gastritis. Continuous problems with heartburn, nausea etc. Gallbladder removal helped some but when last endoscopy showed no new changes went on low carb diet and subsequent gluten free. Best I have felt. Fatigue issues decreased also. Nausea almost non existen
