Could it be Celiac/Gluten Sensitivity?

[HeyImTyler]

Hey everyone. I've been browsing the site for a while but thought I would finally take the plunge and post.

Basically, I've been struggling with my physical and mental health for about 3 years now. The only tests I've had done is a Barium Swallow and a check for H Pylori, both around two years ago now, which didn't show anything. Like most of you, rightly or wrongly I spend a lot of time on Google. I'm basically just trying to help myself but of course sometimes you read some bad things and only give yourself even more worry! I've always had it at the back of my mind that I could have a thing with gluten, if it's possible that you can suddenly develop it in your late 20's. I used to be the kind of guy that could eat what I wanted, when I wanted. Fast forward to now and I have that many symptoms I always find it difficult just to think about what to even start! I know nobody here is likely to be a Doctor and don't expect at all to be diagnosed of course. I'm just curious to find out how many people can match some of my symptoms that have been diagnosed at some point with either Celiac disease or a gluten sensitivity. Here are the main things I have every day:

 

- Nausea and stomach gurgling/bubbling (both in my stomach and intestines)

- Stools all over the place in shape and size, but always have the same weird, foul smell. Mixture of diarrhea and constipation, and everything in-between (also have to go 3 or 4 times within a few hours of waking up)

- Constant belching. Not the kind of burp you do after drinking soda. It feels like it's coming up from my bowels.

- Daily brain fog and tiredness/fatigue. Sometimes I just feel like my brain switches off and I have to lie down and not do anything at all until it passes.

- Constantly feeling shaky and lacking energy,

- Weekly headaches. Feel more like the migraine type.

- Occasional canker sores/mouth ulcers.

- Feeling starving hungry all the time. The mornings are the worst - It often feels like I've not ate a thing for days.

- Daily muscle twitching. Sometimes it feels like I have something crawling under my skin and/or flapping it's wings. This has also been going on for over 2 years now.

 

I also have to admit to suffering with severe anxiety after going through a fair bit of trauma over the last few years. Even before corona was a thing I was basically living like a hermit. I believe my physical symptoms are a major cause for this and not the other way around. But it could well be a circle in that they feed off each other. Hopefully I'll get a few replies because at times it feels like it's driving me crazy. It would be good to hear the thoughts of people that might have also experienced at least some of the above. Appreciate anyone that actually reads this. Stay safe!

[trents]

Welcome to the forum, HeylmTyler!

Yes, it is possible to develop celiac disease at any stage on life.

Many of your symptoms are classic celiac disease symptoms, especially the GI disturbances, foul smelling stool, gas, bloating, brain fog, headaches.  The muscle twitching and shakiness could be a neurological manifestation of celiac disease and neurological damage is very common with celiac disease.

Without a doubt your next step is to get a physician to run a "full celiac panel" of serum antibody tests as outline here: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Try to convince the physician to run more than just the tTG-IGA. It is the most common test run by doctors and one of the most specific but not the most sensitive test. It can miss some who actually do have celiac disease.

[BNGed8]

Hello,

I am 26 (male) and was recently diagnosed with Celiac a little over a month ago. So yes I believe you can develop it at any stage, or maybe it just gets worse at some point since we ignore our issues?

I have had all the symptoms you have listed, except for the mouth ulcers/sores. But have definitely read those could be a symptom when I was trying to self diagnose myself. When I finally was at my limit, I had severe anxiety/depression (couldn't move off the couch), lost 25 pounds in a month, and severe pains in abdominal and almost every muscle.

The ER initially told me to lay off gluten for 2 weeks to see if I felt better, which honestly I am glad I ignored because then the Celiac testing would not have been conclusive as you need to be on a gluten diet for like a couple months I believe. I would definitely start with a blood test with your primary and ask for a referral to a Gastro as soon as you can for an endoscopy. Specialists are very hard to get into these days, some are booked up to 2 months out. What saved me was the referral from the ER I believe, as some ERs actually consult with local practices if they are unsure (IE; neuros, gastros).

I would recommend doing this ASAP as the longer you wait the worse your body can get. The bloating and stools were bad for me but the neuro symptoms that prolonging it lead to is where I feel the most remorse. I am currently experiencing twitching, body pain all over, severe anxiety & maybe 3 hours a sleep a day (bad sleeps at that).

If it is celiac you are most likely not able to take in the nutrients you need which is causing some of these issues and will continue to progress. I have found it very useful posting and reading a lot of posts on this website when I am unable to sleep as well. It is truly helpful knowing other people have gone through the same exact things I am.

Wish you the best!

[HeyImTyler]

 

Appreciate the replies so far!'

Because of how things are currently with the Doctors and hospitals, I might just try to go gluten free for a couple of weeks at least and see if there's any improvement at all with any of my long list of symptoms. I have tried before, to go gluten free, but only managed a couple of days due to a lack of willpower and also listening to my then girlfriend who insisted that all my problems were caused by myself and my anxiety. But it won't hurt to try I guess - Other than my wallet! Just want to feel normal again as I've forgotten almost what it's like to live a normal life and actually enjoying things once again.

[BNGed8]

1 minute ago, HeyImTyler said:

 

Appreciate the replies so far!'

Because of how things are currently with the Doctors and hospitals, I might just try to go gluten free for a couple of weeks at least and see if there's any improvement at all with any of my long list of symptoms. I have tried before, to go gluten free, but only managed a couple of days due to a lack of willpower and also listening to my then girlfriend who insisted that all my problems were caused by myself and my anxiety. But it won't hurt to try I guess - Other than my wallet! Just want to feel normal again as I've forgotten almost what it's like to live a normal life and actually enjoying things once again.

Going Gluten Free can definitely help in the meantime, I just have seen a lot of people on here say that sometimes it helps with everything but anxiety. As you don't have the definitive answer that our minds crave. Also would like to add that even with my diagnoses, I still feel like I am dying as symptoms can last for many months after going Gluten Free.

Finally, never let anyone tell you how you are feeling is just anxiety until you have actually gotten proper tests done. I was initially told by numerous people that it was just anxiety and to "deal with it". As everyone in the world deals with Anxiety due to social media and everything else these days. But fault to my own for waiting so long to make a change/reach out for help.

We all do just want to feel better, and I do hope that you find a peace of mind soon. A little tip as I mentioned prior (make sure your insurance is good); I called the Gastro immediately and they had no openings for a month or so, which lead me to the ER that same week. The ER actually referred me to a Gastro that works there/consults, so I was already in their system which can fast track you. When I called they got me in the next week as they already had my file from the hospital. Same thing with the Neurologist, I was scheduled for August 31st but after I was in their system from the ER visit, they put me at the top of the cancellation list. Was seen the next day. If you make an appointment ALWAYS ask to be put on the cancellation list.

[trents]

Okay, but just be aware that if you decide to go in for testing at some point you would need to go back on gluten. The guidelines are eating the amount of gluten found in two slices of wheat bread daily for 6-8 weeks before serum testing and at least 2 weeks before an endoscopy/biopsy of the small bowel lining. Also, it's really hard for some people to stick to a gluten-free diet unless they have an official diagnosis. There is also a significant learning curve as to where and how gluten is found in the food supply. It is found in things you would never expect. Soy sauce, some chocolate syrups. Almost all canned soups. I could go on and on. Some meds and supplements. Wheat starch is a cheap thickener and filler. Keep in mind that in order to really expect to find healing, you would need to not just cut down on gluten by eliminating major sources such as wheat bread and pasta, but the minor sources as well. And then there is the whole world of cross contamination where gluten is not an ingredient but finds it's way into foods through contact with gluten containing grains in production, storage, transport, manufacture and processing. Eating out at restaurants is Russian roulette, even when they have a "gluten free menu section." The kitchen staff of most eateries are not very careful in this regard and will do things like boiling gluten-free noodles in the same pot of water that was just used for wheat noodles. Or cooking your scrambled eggs on the same grill as the French toast, stirring or serving your gluten-free food with the same utensils they used for gluten containing foods without washing in between. I think you get what I am saying. It's all in or nothing kind of thing.

I'm not trying to frighten you but make you aware that unless you truly eliminate all sources of gluten from your diet you may not see improvement. The other concern I have is that the diligence required to truly eat gluten-free can feed into the anxiety level of those already struggling with high anxiety. That would be something you would need to monitor.

Edited July 15, 2021 by trents

[Distressed]

On 7/15/2021 at 4:44 AM, HeyImTyler said:

Hey everyone. I've been browsing the site for a while but thought I would finally take the plunge and post.

Basically, I've been struggling with my physical and mental health for about 3 years now. The only tests I've had done is a Barium Swallow and a check for H Pylori, both around two years ago now, which didn't show anything. Like most of you, rightly or wrongly I spend a lot of time on Google. I'm basically just trying to help myself but of course sometimes you read some bad things and only give yourself even more worry! I've always had it at the back of my mind that I could have a thing with gluten, if it's possible that you can suddenly develop it in your late 20's. I used to be the kind of guy that could eat what I wanted, when I wanted. Fast forward to now and I have that many symptoms I always find it difficult just to think about what to even start! I know nobody here is likely to be a Doctor and don't expect at all to be diagnosed of course. I'm just curious to find out how many people can match some of my symptoms that have been diagnosed at some point with either Celiac disease or a gluten sensitivity. Here are the main things I have every day:

 

- Nausea and stomach gurgling/bubbling (both in my stomach and intestines)

- Stools all over the place in shape and size, but always have the same weird, foul smell. Mixture of diarrhea and constipation, and everything in-between (also have to go 3 or 4 times within a few hours of waking up)

- Constant belching. Not the kind of burp you do after drinking soda. It feels like it's coming up from my bowels.

- Daily brain fog and tiredness/fatigue. Sometimes I just feel like my brain switches off and I have to lie down and not do anything at all until it passes.

- Constantly feeling shaky and lacking energy,

- Weekly headaches. Feel more like the migraine type.

- Occasional canker sores/mouth ulcers.

- Feeling starving hungry all the time. The mornings are the worst - It often feels like I've not ate a thing for days.

- Daily muscle twitching. Sometimes it feels like I have something crawling under my skin and/or flapping it's wings. This has also been going on for over 2 years now.

 

I also have to admit to suffering with severe anxiety after going through a fair bit of trauma over the last few years. Even before corona was a thing I was basically living like a hermit. I believe my physical symptoms are a major cause for this and not the other way around. But it could well be a circle in that they feed off each other. Hopefully I'll get a few replies because at times it feels like it's driving me crazy. It would be good to hear the thoughts of people that might have also experienced at least some of the above. Appreciate anyone that actually reads this. Stay safe!

Foul smelling stool is caused by inadequate digestion of food.  Foods ingested are expelled too fast due to gut irritation. Agglutinin found in wheat, barley, rye is a lectin.  It is indigestible by humans and toxic to gut lining.  Blocks cholecystokinase that is needed for the release of enzymes by the gallbladder and pancreas. It acts like insulin causing weight gain and insulin resistance, impedes digestion of protein, produces inflammation of the gut lining and kidneys, crosses the blood-brain barrier affecting neurological function and stimulating appetite.  Interferes with DNA replication.  It causes atherosclerosis and enhances the gain of function of viruses. And yes, people younger than you -children under 5- are greatly susceptible to gluten/gliadin/agglutin effects. Then of course there is the enhancement of phytates, gliadin of which gluten might be the least of the problems on the list of irritants. I have deleted most lectin containing foods and am slowing down of high-glycemic non-gluten grains.  Its just tough to do. 

[Distressed]

On 7/15/2021 at 8:35 AM, BNGed8 said:

Going Gluten Free can definitely help in the meantime, I just have seen a lot of people on here say that sometimes it helps with everything but anxiety. As you don't have the definitive answer that our minds crave. Also would like to add that even with my diagnoses, I still feel like I am dying as symptoms can last for many months after going Gluten Free.

Finally, never let anyone tell you how you are feeling is just anxiety until you have actually gotten proper tests done. I was initially told by numerous people that it was just anxiety and to "deal with it". As everyone in the world deals with Anxiety due to social media and everything else these days. But fault to my own for waiting so long to make a change/reach out for help.

We all do just want to feel better, and I do hope that you find a peace of mind soon. A little tip as I mentioned prior (make sure your insurance is good); I called the Gastro immediately and they had no openings for a month or so, which lead me to the ER that same week. The ER actually referred me to a Gastro that works there/consults, so I was already in their system which can fast track you. When I called they got me in the next week as they already had my file from the hospital. Same thing with the Neurologist, I was scheduled for August 31st but after I was in their system from the ER visit, they put me at the top of the cancellation list. Was seen the next day. If you make an appointment ALWAYS ask to be put on the cancellation list.

FYI: It took me 12 weeks to stop "craving" wheat.  

[HeyImTyler]

 

Thanks for the replies. I've actually paid to be tested for something called SIBO, which is another thing I suspect I might possibly have due to chronic stress. I'm also cutting out gluten for the meantime as from what I've read, gluten and any form of carbs isn't a good thing for anybody that does of have SIBO as it feeds the bad bacteria apparently. Today is the first day that I've gone gluten free - Though I did eat a gluten free sub from Subway for dinner and then read after that cross-contamination is highly likely!

[Distressed]

Yep! Cross-contamination is my #1 bummer.  The safest place to eat is at a local "senior community center" restaurant. The chef has awesome dishes and dares not to receive a complaint from the elderly. They can be brutal. 😁