Do I have celiac/Gluten sensitivity?

[JohannesW85]

Hello everybody! 
I am a Swedish guy 39 years old with typ 1 diabetes. I signed up on this forum because I need som help with my problems with my stomach that have been going for 2 years mabey a little more. 

My problems is following: I have egg burps, its taste like rotten eggs also called sulphur burps, and it’s so horrible. After the burps mabey, a 4-5 hours, I must have a toilet nearby because then I have diarrhea. And that can last for a day mabey, sometimes a couple of hours. When I have going to the bathroom and the diarrhea is over no more burping. After wards I am so tired and get sometime headaches. When I got these episodes I must call in sick to my work because I can’t work I am so exhausted. 
 

I have been to my house doctor and have taken tests. I took blood samples gluten and lactose. I have also this week taken feces samples, that I am gooing to leave to the doctor at the end of this week so they can take it into the lab. 
 

When i first visit my doctor is was not my regularly house doctor, and he sad mabey it’s gluten so stay gluten free and see if helps. Well, I did it and like for 10 days everything was so good, I hade some constipation but no burps or loose stools. But then after those 10 days my doctor called me and asked me If  I had taken a test for gluten, which I had but she said ok but it’s negative have you been eaten gluten when you did take the test and I said no, so the test was negative of course. 
She also had looking over my blood samples and I have 

”Postive for HLA-DQ2, subtype DQ2.5 ” 

And because I have diabetes typ 1 the doctor wanted me too to go the hospital to get a gastroscopy. I am wating for my time in the line for do that. I have also for a month now getting some kind of rash, it looks like blisters don’t know if I can upload a picture to show it? 

I try my best to be gluten free, but this weekend I was out with some friends but I drank gluten free beer but also redbull with vodka and I got really drunk and mabey I got my friends glass and I had been drinking regular beer no gluten free. 
My doctor said stay gluten free until the hospital calls you. So I am, but still it can take 4-5 days I got egg burps and then diarrhea, and I can’t for my life figure out how i got gluten in me. The only thing that 3 weekends in a row now, I have been drinking beer gluten free and booze.  The booze have also been gluten free. Still when the weekend have passed by it got new episodes of burps and diarrhea. I have also have this kind of episodes when I’m not drinking any alkohol. We have also clean out everything that is gluten in our home. 

I feel so confused about this, I mean is it so easy to get gluten in your body? 
 

Sorry for long wall of text I hope you had the time to read everything. 

 

[trents]

Welcome to the forum, @JohannesW85!

Your physician gave you bad advice in telling you to avoid gluten until the hospital calls you. Reducing gluten intake will invalidate celiac disease blood antibody testing but it will also invalidate the gastroscopy/biopsy if there is significant time involved between removing gluten and when the procedure is scheduled. The endoscopy/biopsy serves the purpose of checking for the damage caused to the lining of the small bowel caused by the inflammation inherent in celiac disease to that section of the intestines. If you remove gluten ahead of the procedure for a period of weeks or months, there may be enough healing of the intestinal lining to prevent detection of damage.

Gluten is hidden in many manufactured food products that you would never expect to find it in. It can also be found in medications, health supplements and oral hygiene products. It is easy to eat a lower gluten diet by cutting out major sources such as bread and pasta but much more difficult to achieve a truly gluten free state. There is significant learning curve involved.

Current recommendations for the "gluten challenge" in preparing for celiac disease testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a period of at least 2 weeks. But I would certainly extend that time period to make sure the testing is valid.

You might also be dealing with NCGS (Non Celiac Gluten Sensitivity) rather than Celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

[JohannesW85]

Thank you for your reply. Yep, the doctor made a mistake there for sure, but when my other doctor called she said I would wait for the referral to doctor for the gastro it can take months, and so long she thought it would be a good idea to stay gluten free. 
 

I am really concerned about my problems tough and I don’t know if I am eating something with gluten to upset my stomach with the sulphur burps and dihareaa. I have also taken stool samples that I am going to leave on Friday this week and that’s another thing that I am worry about, if it shows something else. I mean, if am ”gluten free” why do I have problems with the stomach still? As I understand, the problem with dihareaa and other problems is when you get gluten in you by mistake for example? 
 

I have this rashes to, going to try to upload them here. 

Here is the link to the pictures of the rashes, it’s not itchy. 
 

 

https://postimg.cc/gallery/p2N8kT7

[trents]

One of the manifestations of celiac disease that some people experience is a rash known as dermatitis herpetiformis. It has little pustules in the center of the bumps. There is no other know cause for dermatitis herpetiformis other than celiac disease. If properly biopsied during an outbreak, dermatitis herpetiformis can be used to diagnose celiac disease. Not every dermatologist knows how to properly biopsy dermatitis herpetiformis. But dermatitis herpetiformis is generally very itchy.

Concerning the diarrhea and the sulfur burps, it certainly is possible the cause is something besides celiac disease or in addition to celiac disease. Many other health problems are known to be associated with celiac disease. I encourage you to look into MCAS (Mast Cell Activation Syndrome)/histamine intolerance, SIBO (Small Intestine Bacterial Overgrowth), H. pylori and IBS (Irritable Bowel Syndrome).

And as I said earlier, there is always the possibility/probability that you are still getting gluten in your diet in unexpected ways.

Edited March 12, 2025 by trents

[JohannesW85]

Did you take a look at my pics that I uploaded? 
 

These rashes is not itchy, but I have seen that people have this too that have celiac and it’s not itchy for them either. I have also heard that sulfur burps are a common things with celiac too.  Yes it can be something else too but it’s to much symptoms that I have that match with either gluten sensitivity or celiac. 
 Hopefully it’s just gluten intolerance and not celiac. 
As I said before I have the gen type for celiac and diabetes typ 1 and the those diseases going hand in hand. 
 

Thanks again Trent for your time to reply, and I wonder if any body else have kind of the same symptoms that I have?