Celiac or Gluten sensitivity possibility?

[Tyler2022]

 

Hi all!

So, I won't beat around the bush, I've been struggling with digestive issues for a few years now. Due to a panic disorder I developed, the only test I've managed to go for so far is a Barium swallow, I believe it's called, which didn't show any abnormalities. I had to cancel an Endoscopy after chickening out at the last minute, while my SIBO breathe test got postponed because of Covid. I've noticed I have a lot of symptoms that seem to go hand in hand with this disease or sensitivity. I'll list the Digestive ones below, in no particular order. All of the symptoms are an every day thing with no real let up.

- Acid reflux (rarely get heartburn though)

- Nausea and mild to moderate pain in upper abdomen (hurts when pressed)

- Stomach/Intestine gurgling and bubbling (really loud sometimes)

- Constand belching; feels like it's coming from upper abdomen

- Inconsistent stools. I can go from 2-5 times a day. Colors vary from dark brown to a very light brown/tan color, sometimes even both at once! Also no consistency at all in shape and size, so kind of all over the place. Also always has a very weird smell. 

On top of the digestive issues I also suffer with constant headaches, tiredness, brain fog, sinus issues and also muscle twitching/fasciculations all over my body.

My diet is terrible and I live largely on carbs such as bread and potato, usually chips or fries. I also sleep terribly, less than 4 hours a night, so that could also easily explain the fatigue I guess. Does the above sound about right for a gluten issue? It's so frustrating because there are so many things that can also give a lot of the symptoms I listed, things like SIBO, Candida and Dyspepsia. 

If you've made it this far, thank you for hearing me out, and I hope to hear back from some of you with your opinions real soon!

Tyler

[trents]

Welcome to the forum, Tyler!

Yes. Your symptoms line up quite well with either celiac disease or NCGS (Non Celiac Gluten Sensitivity) but, as you said, could be due to other medical issues as well.

The first diagnostic step you need to take is getting serum-based celiac antibody testing done. This is a simple blood test that checks for antibodies produced by the inflammation of the small bowel lining when you have celiac disease. There are several antibody tests for celiac disease that can be run and we strongly suggest you have "full celiac panel" done where several antibody tests are ordered and not just the tTG-IGA. Many doctors don't know much about celiac disease and how to diagnose it so they will only order the tTG-IGA test but this one test misses 20% of those who actually do have celiac disease if they are of white European decent and 80% of those from black African ethnicity. Here is a primer dealing with celiac antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Ask for total IGA, tTG-IGA, and Deamidated gliadin peptide (DGP IgA and IgG). The EMA test can be valuable but is relatively insensitive and expensive. There is no test for NCGS, even though it shares many of the same symptoms with celiac disease, so a diagnosis of NCGS would depend on first ruling out celiac disease.

Again, most doctors don't know much about celiac disease so go armed with knowledge about what testing you want done and be prepared to be respectfully assertive.

[Tyler2022]

1 minute ago, trents said:

Welcome to the forum, Tyler!

Yes. Your symptoms line up quite well with either celiac disease or NCGS (Non Celiac Gluten Sensitivity) but, as you said, could be due to other medical issues as well.

The first diagnostic step you need to take is getting serum-based celiac antibody testing done. This is a simple blood test that checks for antibodies produced by the inflammation of the small bowel lining when you have celiac disease. There are several antibody tests for celiac disease that can be run and we strongly suggest you have "full celiac panel" done where several antibody tests are ordered and not just the tTG-IGA. Many doctors don't know much about celiac disease and how to diagnose it so they will only order the tTG-IGA test but this one test misses 20% of those who actually do have celiac disease if they are of white European decent and 80% of those from black African ethnicity. Here is a primer dealing with celiac antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Ask for total IGA, tTG-IGA, and Deamidated gliadin peptide (DGP IgA and IgG). The EMA test can be valuable but is relatively insensitive and expensive. There is no test for NCGS, even though it shares many of the same symptoms with celiac disease, so a diagnosis of NCGS would depend on first ruling out celiac disease.

Again, most doctors don't know much about celiac disease so go armed with knowledge about what testing you want done and be prepared to be respectfully assertive.

Thanks for the reply and advice!

Do you think those tests you can buy for little money on Amazon are worth getting, such as the one below? I've always wondered and had my doubts about how accurate they actually were, being so cheap and also done from your own home. 

https://www.amazon.co.uk/Coeliac-Gluten-Intolerance-Home-Testing/dp/B077Z8WJGJ/ref=sr_1_6?crid=24LQ524X05I53&keywords=gluten+test&qid=1666111489&qu=eyJxc2MiOiIzLjI1IiwicXNhIjoiMi4xNiIsInFzcCI6IjEuOTEifQ%3D%3D&sprefix=gluten+test%2Caps%2C110&sr=8-6

[trents]

I am not familiar with the test kit you link above.

I would trust this one, however, if it is available to you: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Do you not have access to public healthcare where you live?

[Rogol72]

@Tyler2022,

Here's a home Coeliac test you can get in the UK ... https://www.letsgetchecked.co.uk/home-coeliac-test/

You should be able to get a Coeliac blood test on the NHS which would be better. I would strongly advocate for one based on your symptoms.

https://www.nhs.uk/conditions/coeliac-disease/diagnosis/

With regard to the endoscopy, the doctor and nurses are there to reassure you and set your mind at ease about the procedure. You can always tell them you are anxious and ask them to sedate you enough to not experience or remember it. Every time I go for one, I say to the doctor ... "knock me out cold man". Since all your symptoms indicate a likely-hood of having Coeliac Disease, it's important to get a definitive diagnosis either way. Life will get so much better and it sounds like you're miserable. You're panic disorder may be due to vitamin and mineral deficiencies brought on by Coeliac Disease and poor diet.

I have a hiatus hernia and had very uncomfortable reflux resulting in some anxiety both times I had to lie flat and still in an MRI machine for a scan. It took lots of deep breathing and focus but I got through it!!

[Beverley Ann Johnson]

19 hours ago, Tyler2022 said:

 

Hi all!

So, I won't beat around the bush, I've been struggling with digestive issues for a few years now. Due to a panic disorder I developed, the only test I've managed to go for so far is a Barium swallow, I believe it's called, which didn't show any abnormalities. I had to cancel an Endoscopy after chickening out at the last minute, while my SIBO breathe test got postponed because of Covid. I've noticed I have a lot of symptoms that seem to go hand in hand with this disease or sensitivity. I'll list the Digestive ones below, in no particular order. All of the symptoms are an every day thing with no real let up.

- Acid reflux (rarely get heartburn though)

- Nausea and mild to moderate pain in upper abdomen (hurts when pressed)

- Stomach/Intestine gurgling and bubbling (really loud sometimes)

- Constand belching; feels like it's coming from upper abdomen

- Inconsistent stools. I can go from 2-5 times a day. Colors vary from dark brown to a very light brown/tan color, sometimes even both at once! Also no consistency at all in shape and size, so kind of all over the place. Also always has a very weird smell. 

On top of the digestive issues I also suffer with constant headaches, tiredness, brain fog, sinus issues and also muscle twitching/fasciculations all over my body.

My diet is terrible and I live largely on carbs such as bread and potato, usually chips or fries. I also sleep terribly, less than 4 hours a night, so that could also easily explain the fatigue I guess. Does the above sound about right for a gluten issue? It's so frustrating because there are so many things that can also give a lot of the symptoms I listed, things like SIBO, Candida and Dyspepsia. 

If you've made it this far, thank you for hearing me out, and I hope to hear back from some of you with your opinions real soon!

Tyler

Hi Tyler,

Sorry you are going through all these digestive issues, I went through to the same thing for a period of two years, huge non-stop bouts of nausea and pain.  I went gluten free in April of this year and it is getting better, you are either gluten sensitive or have celiac, would be good to get tested.  My brain fog is gone, body pain gone, vertigo gone, and nausea gone. I am slowly recovering from a nightmare having to discover all that on my own as I was diagnosed with IBS and FM.  This is just the beginning of a new life.

 

[Tyler2022]

1 hour ago, Beverley Ann Johnson said:

Hi Tyler,

Sorry you are going through all these digestive issues, I went through to the same thing for a period of two years, huge non-stop bouts of nausea and pain.  I went gluten free in April of this year and it is getting better, you are either gluten sensitive or have celiac, would be good to get tested.  My brain fog is gone, body pain gone, vertigo gone, and nausea gone. I am slowly recovering from a nightmare having to discover all that on my own as I was diagnosed with IBS and FM.  This is just the beginning of a new life.

 

 

So glad to hear you're doing much better and living your life again! I've kind of given up hope lately and feel like I'll never get better as along with my health anxiety, it's all such a struggle. I genuinely think I might have SIBO on top of a potential gluten thing also. The Doctor diagnosed me with Dyspepsia a few years ago right at the beginning and gave me acid blockers (I never took them) despite actually not giving me any sort of test to check whether my acid was low, high or normal!

I tried to have a day today where I went without gluten. Started the day off with 2 small pieces of gluten free fruit loaf but it felt like I had ate absolutely nothing. I often have these moments, especially in the morning, where I feel like I've not ate in days, even if it's actually just been hours, and feel worse then ever then, so I quickly gave in after an hour or two and ate my usual ham salad roll from Greggs! 🙄

[Tyler2022]

20 hours ago, Rogol72 said:

@Tyler2022,

Here's a home Coeliac test you can get in the UK ... https://www.letsgetchecked.co.uk/home-coeliac-test/

You should be able to get a Coeliac blood test on the NHS which would be better. I would strongly advocate for one based on your symptoms.

https://www.nhs.uk/conditions/coeliac-disease/diagnosis/

With regard to the endoscopy, the doctor and nurses are there to reassure you and set your mind at ease about the procedure. You can always tell them you are anxious and ask them to sedate you enough to not experience or remember it. Every time I go for one, I say to the doctor ... "knock me out cold man". Since all your symptoms indicate a likely-hood of having Coeliac Disease, it's important to get a definitive diagnosis either way. Life will get so much better and it sounds like you're miserable. You're panic disorder may be due to vitamin and mineral deficiencies brought on by Coeliac Disease and poor diet.

I have a hiatus hernia and had very uncomfortable reflux resulting in some anxiety both times I had to lie flat and still in an MRI machine for a scan. It took lots of deep breathing and focus but I got through it!!

Yeah, I really regret not being brave enough to have the endoscopy now as I know it would have told me a lot. It wasn't the actual procedure so much, just the fact that I didn't want to have a panic attack while out and shame myself. I've lived like a hermit the last 2-3 years which cost me my then girlfriend and my job, but nobody ever said life would be a walk in the park for anyone I suppose.

Appreciate the advice, and I'll be sure to check the link out. 

[Tyler2022]

22 hours ago, trents said:

Welcome to the forum, Tyler!

Yes. Your symptoms line up quite well with either celiac disease or NCGS (Non Celiac Gluten Sensitivity) but, as you said, could be due to other medical issues as well.

The first diagnostic step you need to take is getting serum-based celiac antibody testing done. This is a simple blood test that checks for antibodies produced by the inflammation of the small bowel lining when you have celiac disease. There are several antibody tests for celiac disease that can be run and we strongly suggest you have "full celiac panel" done where several antibody tests are ordered and not just the tTG-IGA. Many doctors don't know much about celiac disease and how to diagnose it so they will only order the tTG-IGA test but this one test misses 20% of those who actually do have celiac disease if they are of white European decent and 80% of those from black African ethnicity. Here is a primer dealing with celiac antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Ask for total IGA, tTG-IGA, and Deamidated gliadin peptide (DGP IgA and IgG). The EMA test can be valuable but is relatively insensitive and expensive. There is no test for NCGS, even though it shares many of the same symptoms with celiac disease, so a diagnosis of NCGS would depend on first ruling out celiac disease.

Again, most doctors don't know much about celiac disease so go armed with knowledge about what testing you want done and be prepared to be respectfully assertive.

Really appreciate the welcome, and of course the helpful thoughts and advice! 👍

[trents]

35 minutes ago, Tyler2022 said:

Yeah, I really regret not being brave enough to have the endoscopy now as I know it would have told me a lot. It wasn't the actual procedure so much, just the fact that I didn't want to have a panic attack while out and shame myself. I've lived like a hermit the last 2-3 years which cost me my then girlfriend and my job, but nobody ever said life would be a walk in the park for anyone I suppose.

Appreciate the advice, and I'll be sure to check the link out. 

Sounds like you could be suffering from depression and maybe anxiety disorder. These mental health conditions can have a nutritional deficiency basis, at least in part, which goes hand in hand with long-term unattended celiac disease. Do you have any meaningful support from family/friends? I might suggest also connecting with mental health services. You seem to be in this deep hole right now.

[Tyler2022]

49 minutes ago, trents said:

Sounds like you could be suffering from depression and maybe anxiety disorder. These mental health conditions can have a nutritional deficiency basis, at least in part, which goes hand in hand with long-term unattended celiac disease. Do you have any meaningful support from family/friends? I might suggest also connecting with mental health services. You seem to be in this deep hole right now.

I have plenty of "friends" from afar. People I was once close to. But none of them know my issues and I prefer them to remember the way I used to be really. I lost 4 family members in the last 3-4 years so don't have anyone left to kick me up the arse when I need it, to help me to go to these tests such as the Endoscopy when they come around. I know I have an anxiety disorder but believe it's my stomach issues that are causing it. I fell asleep this afternoon by accident for a couple of hours and missed lunch, and felt absolutely terrible when I woke up. Stomach was gurgling and growling, acid reflux, shaky, heart rate had gone from my usual 70 odd to over 100. But as soon as I ate bread (not gluten free) I felt a little better. It's kinda strange.

[trents]

Gluten interacts with brain cells much like opiates and has addictive properties: https://justthrivehealth.com/blogs/blog/you-may-be-addicted-to-gluten

[Kate333]

10 hours ago, Beverley Ann Johnson said:

 

 

[Kate333]

Hi Tyler.

Severe chronic depression/anxiety alone--aside from the issues of celiac disease, gluten sensitivity and/or vitamin deficiency--can cause the physical symptoms you described.  And from your comments about the many recent losses in your life, plus the stress of the ongoing pandemic, it's no wonder you and your body are feeling so crummy! 

It might be helpful to ask your primary doc for referral to a mental health specialist who can help you manage your stress with counseling or a low-dose anti-depressant/anti-anxiety meds.  Also, see anxietycentre.org, a great website that describes in great detail the many ways anxiety shows up in physical symptoms, including upset gut, fatigue, body pain, etc.

Good luck on your healing journey!