Symptoms/ feeling lost with it all

[Gerry92]

Hi all. 
I am very new to this all as unfortunately I am finding it very hard to get taken seriously by the doctors especially at the moment. 
I have been coughing up coffee grounds / brown stuff since June last year. I must admit I have been a cannabis user which has masked/helped with the symptoms clearly as I have recently stopped using to try and work out what’s going on and if that’s had an effect. Since stopping I've noticed some painful side effects after eating gluten. I have flu like symptoms like feelings hot and getting chills, my throat feels fluffy and swollen sometimes, I have a tingling in my back and my body can get itchy but not always to an extent, feeling tired and also heart burn. Started getting really gassy the last few months and super bloated!! Going to the toilet can be loose but not extreme. 
I have a blood test next week, as much as I would like to stop the gluten I am aware I have to carry on for the test. My doctor today stated that I did in fact have a test 10 years ago but it came back negative?! Would 10 years really mean I don’t have it now? 
I would just love to get to the bottom of this! Do these symptoms sound familiar to some people with celiac disease? 

[plumbago]

My first thought reading this is to ask if the cough is from the GI or respiratory tract? Which do you think?

Otherwise, you are doing the right thing by pursuing blood tests, just make sure your doc is ordering the right panel of tests. You can develop active celiac after testing negative 10 years ago, I would think.

[Gerry92]

I had an X-ray on my chest/lungs and that did come back all clear. I think it’s more GI, the doctors did put me on gastric medication at the end of last year but I had side effects and didn’t want to go back on them without knowing what the actual issue is! 
 

I wasn’t aware there is different panels, I will have a look into this. Thank you for you reply 

[GFinDC]

Hi Gerry,

Yes, celiac disease can develop at anytime in life.  And there is a wide array of possible symptoms    There must be a reason you were tested 10 years ago?  GI symptoms then perhaps?  Celiac symptoms can get worse over time, as the damage builds up.   Malabsorption of nutrients tends to get worse and that can cause many health issues.

Doctors often do a screening test for celiac with just the ttg IgA antibody.  But there are several other antibody tests included in the complete or full celiac disease test panel.  So it's best to get the complete test panel in case you are one of the people who only reacts on one test.

You should be able to cut down on gluten without affecting the tests.  Eating the equivalent of a slice of bread a day should be enough to keep the antibodies active for testing.  Do check with your doctor on this though.

Some OTC meds might help.  Pepto Bismol and digestive enzymes for instance.  Peppermint tea can help with gas.

You may find that cutting out dairy and sugar help too.

It may be helpful to write a diary of your symptoms each day and what you ate.  Some doctors may even read it and make a connection.  But it could make things clearer for you also.  If you have the option of choosing doctor, an internet search for a celiac aware doc is good.

Edited January 8, 2021 by GFinDC

[Scott Adams]

Hi Gerry, Welcome to the forum!

You may find this article, even though it's a bit old, helpful in your situation:

 

[GodsGal]

Hi Gerry!

Is your doctor a gastroenterologist or a general practitioner? Even very good doctors don't know everything. They are still human. 😊 Feel free to seek out a second opinion or ask for a referral.

I am not a medical professional. Glad you are getting it checked out. I would definitely second the suggestion about making sure you get the full celiac panel. Has the doctor mentioned anything about an endoscopy yet? 

[Gerry92]

16 hours ago, GFinDC said:

Hi Gerry,

Yes, celiac disease can develop at anytime in life.  And there is a wide array of possible symptoms    There must be a reason you were tested 10 years ago?  GI symptoms then perhaps?  Celiac symptoms can get worse over time, as the damage builds up.   Malabsorption of nutrients tends to get worse and that can cause many health issues.

Doctors often do a screening test for celiac with just the ttg IgA antibody.  But there are several other antibody tests included in the complete or full celiac disease test panel.  So it's best to get the complete test panel in case you are one of the people who only reacts on one test.

You should be able to cut down on gluten without affecting the tests.  Eating the equivalent of a slice of bread a day should be enough to keep the antibodies active for testing.  Do check with your doctor on this though.

Some OTC meds might help.  Pepto Bismol and digestive enzymes for instance.  Peppermint tea can help with gas.

You may find that cutting out dairy and sugar help too.

It may be helpful to write a diary of your symptoms each day and what you ate.  Some doctors may even read it and make a connection.  But it could make things clearer for you also.  If you have the option of choosing doctor, an internet search for a celiac aware doc is good.

Thank you very much for your reply. 10years ago as I was feeling tired and sick after certain foods. I will definitely make sure they do the whole panel when I have the tests next week. 
 
overall I do have a pretty good diet. I cut milk and that out about a year ago now. I cut most things out and I felt so much better, but unfortunately for an accurate test it needs to be eaten. 
 

thank you for the peppermint idea, had one last night and found it helped and with the pain aswell. Soothing. 
 

a diary is a great idea, I will start doing this! Thank you again 

13 hours ago, Scott Adams said:

Hi Gerry, Welcome to the forum!

You may find this article, even though it's a bit old, helpful in your situation:

 

Thank you for this!! I will definitely take a look!  

[Gerry92]

7 hours ago, GodsGal said:

Hi Gerry!

Is your doctor a gastroenterologist or a general practitioner? Even very good doctors don't know everything. They are still human. 😊 Feel free to seek out a second opinion or ask for a referral.

I am not a medical professional. Glad you are getting it checked out. I would definitely second the suggestion about making sure you get the full celiac panel. Has the doctor mentioned anything about an endoscopy yet? 

He is just a general practitioner. I will be looking at a second opinion from a gastroenterologist though. Oh I totally appreciate they don’t know everything none of us do ☺️ But I would appreciate them to seem a little interested in what’s going on with my health to which unfortunately I am not getting that from them. 
 

I am currently waiting for a Gastroscopy to which I am pushing for or might look at private as due to the “pandemic” that department are now 5months behind! 

[GFinDC]

Hi again Gerry,

Coffee ground vomit can be a sign of gallbladder problems I think.  Pretty sure I read that somewhere in the past.  Gallbladder problems are somewhat common with celiac disease.  I have had that before myself but it wasn't persistent.

Quite a few people have posted on the forum in the past about having their gallbladders removed and then finding out they had celiac disease later.  The doctors do a HIDA scan for testing gallbladder function.  Depending on the situation, you may or may not need your gallbladder removed.   If you aren't in severe pain each day from it then it may recover on the gluten-free diet.  The coffee ground vomit is possibly blood.  Don't get super freaked about that but do see a doctor soon.

I have had that symptom before but it went away.

 

[plumbago]

Coughing or vomiting up blood can be caused by blood in the upper GI system, in particular the stomach. If it truly is "coffee ground emesis" (vomit), that generally means it's been in the stomach a while. I'm not sure about the gallbladder. Maybe. I'm obviously not a GI specialist!

You said, though, that you are coughing up blood, that's why I asked which system you thought it was coming from. At any rate, the important thing for you here is that you have a specialist, who is hopefully monitoring this issue including blood work.

[Gerry92]

1 hour ago, GFinDC said:

Hi again Gerry,

Coffee ground vomit can be a sign of gallbladder problems I think.  Pretty sure I read that somewhere in the past.  Gallbladder problems are somewhat common with celiac disease.  I have had that before myself but it wasn't persistent.

Quite a few people have posted on the forum in the past about having their gallbladders removed and then finding out they had celiac disease later.  The doctors do a HIDA scan for testing gallbladder function.  Depending on the situation, you may or may not need your gallbladder removed.   If you aren't in severe pain each day from it then it may recover on the gluten-free diet.  The coffee ground vomit is possibly blood.  Don't get super freaked about that but do see a doctor soon.

I have had that symptom before but it went away.

 

Thank you very much for this reply and the video provided!! Great information. 
 

when I originally told my doctor about this he said he thought it might be GI as I find it’s more brown in the mornings and gradually eases off through the day. Of course from being led down, I did also find it did ease off once I cut gluten out for a few weeks but now having to eat it again it’s more noticeable and certainly in the mornings when I first cough and it’s Phlegmy. I’m not throwing up,  it’s from coughing but a deep cough not from the throat. 
interesting about the gallbladder and celiac disease. I’m just looking forward to not having to eat gluten and seeing the effect that will have. Thank you again 

[Gerry92]

1 hour ago, plumbago said:

Coughing or vomiting up blood can be caused by blood in the upper GI system, in particular the stomach. If it truly is "coffee ground emesis" (vomit), that generally means it's been in the stomach a while. I'm not sure about the gallbladder. Maybe. I'm obviously not a GI specialist!

You said, though, that you are coughing up blood, that's why I asked which system you thought it was coming from. At any rate, the important thing for you here is that you have a specialist, who is hopefully monitoring this issue including blood work.

It’s not fresh blood ( a relief ) it’s dark brown like tar you could say! At first my doctor did say from the GI and to do with the lining in my stomach? 
I have made an enquiry about seeing a specialist and hopefully having more of a result to what this could be. Thank you again for you reply 

[GFinDC]

3 hours ago, Gerry92 said:

It’s not fresh blood ( a relief ) it’s dark brown like tar you could say! At first my doctor did say from the GI and to do with the lining in my stomach? 
I have made an enquiry about seeing a specialist and hopefully having more of a result to what this could be. Thank you again for you reply 

Hi Gerry,

Just to try a test, can you try sleeping in a more vertical position?  Like with a pillow propping your head/chest up?  If the bleeding is caused by a leak in the valve separating your stomach from your esophagus then sleeping more vertically might stop or reduce the issue.  Stomach acid leaking past the valve can cause irritation and bleeding in the esophagus.  This is of course pure speculation and in the best of internet tradition!

Peppermint helps relax smooth muscle and makes it easier to get gas out of the stomach.  Lots of gas in the stomach can cause pressure forcing the acid past the valve while sleeping.  Some people have a weak valve or physically defective valve that lets the acid leak also.  This acid leaking can cause heartburn or even esophageal erosion/bleeding.  Your GI doctor can probably figure this out pretty quickly with an endoscopy.  If they are ever free from the pandemic crush that is.

A typical doctor doctor treatment for acid reflux in the USA is PPI's to reduce stomach acid production.  I suggest you avoid those if possible.  The reduction of stomach acid interferes with digestion and that's pretty important for celiacs who are already dealing with malabsorption.  Also, people tend to become dependent on the PPI's and have a hard time getting off them.

I don't suppose you have Pepto Bismol over there in the UK?  It's kind of a pink liquid goo that we take for stomach problems.  It has bismuth and salisylic acid in it.  The bismuth is supposedly able to coat the inside of the GI tract and protect it from irritants temporarily.  It also has the added benefit of making our insides nice and pink.  Anyway, maybe you have something similar you can try.

It's good you stopped dairy earlier.  In celiac the villi are destroyed or damaged.  Those villi lining the small intestine produce an enzyme that digests milk sugar (lactose).  So we tend to become lactose intolerant.  The gut bacteria eat the undigested lactose and create gas and other no-goods causing bloating and diarreha.

https://www.healthline.com/health/coffee-ground-vomitus  

Since your symptoms got worse doing the gluten challenge it is reasonable to think they will go away on a full gluten-free diet over time IMHO.  At least we can hope so.  Recovery from celiac damage varies but it can take 6 months to 2 years or more often enough.

[Gerry92]

thank you very much for this information. I will definitely trying the new sleeping position and see how it goes and if it makes a difference. 

I must say I am not a big fan on medication unless it’s absolutely Necessary and do think our body’s are amazing at healing. So I will definitely stay away for that.
But the pink stuff you’re describing sounds like what we call Gaviscon over here just from OTC, I actually brought some yesterday and I’ve found it’s helped with the indigestion, so I will keep taking it and see how that goes. 
 

thank you for that link, I think I’ve come across it before. My general practitioner did mention it might ulcers before 🤷🏼‍♀️ But the medication really didn’t sit well with me and I would rather know exactly what it is before chucking meds down me. 
 

I am feeling that gluten is having an impact on this all so I’m just looking forward to cutting it out completely and seeing what happens! 
 

Again thank you all information is appreciated! 
 

 

 

[plumbago]

On 1/9/2021 at 7:49 AM, Gerry92 said:

It’s not fresh blood ( a relief ) it’s dark brown like tar you could say! At first my doctor did say from the GI and to do with the lining in my stomach? 
I have made an enquiry about seeing a specialist and hopefully having more of a result to what this could be. Thank you again for you reply 

You're welcome. Important that you do have a specialist who can monitor this, to rule out a bleeding ulcer. Good luck.

[Beverage]

I had bad acid reflux, and one of the things that helped is propping up the bed a little bit at the head. We started with a piece of 2x4 wood, and then added another 2x4 at the head a few days later, and the single 2x4 at the legs in the middle of the bed.  Most articles say to elevate 8" to make a difference, but I can't imagine that incline, and it wasn't necessary for me.  This helped enough and it is not noticeable.

Don't get into taking acid reducers for long, they are not supposed to be taken for very long, and we need stomach acid to break things down so that they can be absorbed in the intestines, especially things like vitamin D, which is critical for immune system and especially important with coronovirus.

I ended up taking acid reducer for about a week, then followed ideas in this article. The thumping your heels down really really helped.  I now take no acid reducers, and take a sip of apple cider vinegar before each meal with protein.

https://drjockers.com/hiatal-hernia/