New to this, possibly in denial…

[Jnapier]

Firstly I apologise for this being covered many times before however sometimes being personally addressed helps drive the message home. 

About two years ago I went to the doctor with pressure manifesting itself around the prostate region.. kind of felt like a small golf ball down there. I worriedly went to the docs and had to undergo the old “procedure” which at 39 the doctor thought was a weird request.. haha 

However I’m a worrier and that kind of trouble runs in one side of the family, prostate cancer etc. 

Anyway, the doc suggested it was Prostastis and I went away. The pressure subsided and I went on with life. 

Then last January the back of my tongue started feeling very odd. Almost dry at the back, and weirdly the feeling jumped sides. Doc said it could be Oral Thrush! So I tried various horrible tasting things and also got a tongue scraper from Amazon. (Horrible device, YAK) 

Again I just got on with my tongue sometimes being an issue and sometimes not. 

Fast forward to two weeks ago and the pressure returned with also a sore tummy, not cramps, more like Mike Tyson had a small bag session on me. 

I also had light pain in my lower back and also I noticed when I went for a wee it wasn’t a strong flow. Sorry for all this people, I really am haha 

So off I went to the doc and again had “the procedure” to get the all clear and the idea that Prostastis was the culprit.

However this doc sent me for blood tests looking for an inflammation protein just to be safe that it wasn’t anything nasty. 

Then last week I went to get the results and was told I had a high amount of the inflammation protein (ITA, ITG the exact name escapes me during the writing of this post) 

Turns out he says I have Celiac Disease… 

I went home shocked and a bit confused, it’s been 5 days now and I’m talking to a more senior doc later just to get a second opinion. 
 

I mean if it isn’t this then what’s going on?! 
 

As you can tell by my tone I’m hoping it isn’t Celiac as it means many many changes but ones I started as soon as I had the diagnosis. I have a 3 year old son so I will do what is needed to keep me about for as long as possible especially when reading the risk of getting nastier things beginning with C (I’m 41). 

Giving up Guinness, Pizzas, Burgers and all the naughty stuff is a bit of a downer however that list also isn’t full of the most healthy examples I could have illustrated to you eh… 

Im a lover of being active including running, weight lifting and cycling and with a marathon coming up in April, I don’t know why I told you that apart from my list of favourite foods may have given you a false impression of me haha. 
 

So, 

Is this all normal?

Anyone else had these symptoms? 
 

Does IBS do the same thing results wise? 

Im clutching at straws I know. I have a sense of humour as you can tell however it doesn’t stop it occasionally catching me out still. 
 

Please also read this post knowing that I’m extremely sympathetic to users with really bad symptoms. I have it fairly light I believe as I don’t have to run to the bathroom etc. So much love to you all. X 

Im just a bit confused…😶

Thanks Jnapier 

 

P.S Blood tests also shows low iron levels and I also get hangry really bad! Apologies for any typos, I’m looking after my son at the time of writing this.

[cristiana]

Hello Jnapier and welcome to the forum!

If your doctor says you have coeliac disease I wouldn't like to argue with that 🙂 but if you can find your blood test results you may wish to post them here so we can have a look.   I suspect the TTG test might have been one you have omitted from the list.

Did he say you are to have an endoscopy?  It isn't always done here where I live in the UK these days but it used to be the gold standard proof the NHS required.  That said, I don't know where you are posting from so this may not be relevant.  And since COVID even NHS hospitals aren't always doing an endoscopy anymore.

Re: your symptoms: as a female I can't say I've had issues with prostitis (!) but what I can tell you is when I was diagnosed and for a while afterwards I had such curious pains and sensations - burning pain in my ribs, numb and tingling extremities, and one curious one - the feeling that cold water drops were falling on my skin.   Coeliac disease does all sort of strange things to one's nerve endings.  One thing though, if you can go gluten free you may find, as I have, that such bizarre symptoms will improve, if not disappear altogether.  One thing you may wish to find out is if you are deficient in anything else other than iron.  Iron's a biggie with Coeliacs though, and once that is addressed you should find you will feel a lot better generally.

Cristiana

Edited December 5, 2022 by cristiana

[Jnapier]

2 minutes ago, cristiana said:

Hello Jnapier and welcome to the forum!

If your doctor says you have coeliac disease I wouldn't like to argue with that 🙂 but if you can find your blood test results you may wish to post them here so we can have a look.   I suspect the TTG test might have been one you have omitted from the list.

Did he say you are to have an endoscopy?  It isn't always done here where I live in the UK these days but it used to be the gold standard proof the NHS required.  That said, I don't know where you are posting from so this may not be relevant.  And since COVID even NHS hospitals aren't always doing an endoscopy anymore.

Re: your symptoms: as a female I can't say I've had issues with prostitis (!) but what I can tell you is when I was diagnosed and for a while afterwards I had such curious pains and sensations - burning pain in my ribs, numb and tingling extremities, and one curious one - the feeling that cold water drops were falling on my skin.   Coeliac disease does all sort of strange things to one's nerve endings.  One thing though, if you can go gluten free you may find, as I have, that such bizarre symptoms will get improve, if not disappear altogether.  One thing you may wish to find out is if you are deficient in anything else other than iron.  Iron's a biggie with Coeliacs though, and once that is addressed you should find you will feel a lot better generally.

Cristiana

Hi Cristina and thanks so much for taking time to write a lovely reply. 
 

I to live in the UK. I’ve literally just spoken to a doctor and they have said I should go Gluten free for a further 2 weeks and have another test to see if I have a Sensitivity to Gluten instead of Celiac. 
 

I asked what that meant and essentially Gluten free but occasionally you can have some. 
 

My figure is 8.2 with 5 being the norm apparently. 

[Jnapier]

3 minutes ago, Jnapier said:

Hi Cristina and thanks so much for taking time to write a lovely reply. 
 

I to live in the UK. I’ve literally just spoken to a doctor and they have said I should go Gluten free for a further 2 weeks and have another test to see if I have a Sensitivity to Gluten instead of Celiac. 
 

I asked what that meant and essentially Gluten free but occasionally you can have some. 
 

My figure is 8.2 with 5 being the norm apparently. 

P.S I have high iron and low Folic. 

[cristiana]

Is the other test an endoscopy?  Because if this is the test he's suggesting the normal course of action would be to continue to eat gluten until the test if it is in 2 weeks' time.   Normally you would would need to eat two slices of glutenous bread a day, or the equivalent.  In my own case I just ate all the gluten containing foods I knew I'd miss if I had to give them up - primarily Weetabix and Penguin bars!   

Sorry to refer you to another website but this is from Coeliac UK, the British Charity for Coeliacs, and you may find it helpful.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

[Jnapier]

1 minute ago, cristiana said:

Is the other test an endoscopy?  Because if this is the test he's suggesting the normal course of action would be to continue to eat gluten until the test if it is in 2 weeks' time.   Normally you would would need to eat two slices of glutenous bread a day, or the equivalent.  In my own case I just ate all the gluten containing foods I knew I'd miss if I had to give them up - primarily Weetabix and Penguin bars!   

Sorry to refer you to another website but this is from Coeliac UK, the British Charity for Coeliacs, and you may find it helpful.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

I did ask about a Biopsy however the doc said that this method of testing , one against the other would show them what they need to see. I guess they are using the high result as the benchmark and then see what happens when I cut out for a period of weeks. 
 

Just in case you didn’t see I’m High Iron and low Folic. 

[cristiana]

That's very interesting, it does sound as if they are waiting to see if your levels come down.

Sorry - just for clarification - did you mean you were high iron, because in your earlier post you said low iron? 

I've got to go offline for a bit now so sorry if I don't get back to you straight away but I'm hoping someone else will be able to help in my absence, particularly with regard to the prostitis.

 

[Jnapier]

4 minutes ago, cristiana said:

That's very interesting, it does sound as if they are waiting to see if your levels come down.

Sorry - just for clarification - did you mean you were high iron, because in your earlier post you said low iron? 

I've got to go offline for a bit now so sorry if I don't get back to you straight away but I'm hoping someone else will be able to help in my absence, particularly with regard to the prostitis.

 

I probably did confuse things haha. High Iron, need to adjust diet as I have too much! 
 

Thanks for taking the time this afternoon. 

[knitty kitty]

@Jnapier,

Welcome to the forum.

I found this interesting article for you.  

https://www.hormonesmatter.com/urological-and-sexual-symptoms-in-male-thiamine-deficiency/

 

[Jnapier]

15 minutes ago, knitty kitty said:

@Jnapier,

Welcome to the forum.

I found this interesting article for you.  

https://www.hormonesmatter.com/urological-and-sexual-symptoms-in-male-thiamine-deficiency/

 

Cheers for that Knitty. Much appreciated. 

[trents]

Welcome to the forum, Jnapier!

Was that test run which the doctor used to declare you had celiac disease the tTG-IGA? It is the most common antibody blood test ordered by doctors looking for celiac disease.

It is possible the "other test" your doctor wants ordered are additional blood antibody tests but it is also possible he wants to do an endoscopy with biopsy of the small bowel lining. This is the gold standard test for celiac disease. In celiac disease, the consumption of gluten generates an autoimmune reaction in the small bowel that damages the villi that line the small bowel. Over time, this reduces the efficiency of the small bowel to assimilate the nutrients in our food since this villous lining is the nutrient absorbing organ of the body. This, in turn, typically results in various vitamin and mineral deficiencies. The blood antibody tests are designed to detect the inflammation. The endoscopy with biopsy actually looks at samples of the villi to check for damage.

There is also a condition involving a reaction to gluten known as NCGS (Non Celiac Gluten Sensitivity). There is not test for it. Celaic disease must first be ruled out. celiac disease and NCGS share many of the same symptoms and NCGS is 10x more common.

But please hear this. If you will have further testing done for celiac disease, you must not begin a gluten free diet or even cut down on gluten consumption. If you do, you risk invalidating the testing. Some healing would take place in the villi and fewer antibodies would be produced. The Mayo Clinic Guidelines for a pretest gluten challenge is the daily consumption of 2 slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to blood antibody testing and for at least two weeks leading up to an endoscopy/biopsy.

[Jnapier]

4 minutes ago, trents said:

Welcome to the forum, Jnapier!

Was that test run which the doctor used to declare you had celiac disease the tTG-IGA? It is the most common antibody blood test ordered by doctors looking for celiac disease.

It is possible the "other test" your doctor wants ordered are additional blood antibody tests but it is also possible he wants to do an endoscopy with biopsy of the small bowel lining. This is the gold standard test for celiac disease. In celiac disease, the consumption of gluten generates an autoimmune reaction in the small bowel that damages the villi that line the small bowel. Over time, this reduces the efficiency of the small bowel to assimilate the nutrients in our food since this villous lining is the nutrient absorbing organ of the body. This, in turn, typically results in various vitamin and mineral deficiencies. The blood antibody tests are designed to detect the inflammation. The endoscopy with biopsy actually looks at samples of the villi to check for damage.

There is also a condition involving a reaction to gluten known as NCGS (Non Celiac Gluten Sensitivity). There is not test for it. Celaic disease must first be ruled out. celiac disease and NCGS share many of the same symptoms and NCGS is 10x more common.

But please hear this. If you will have further testing done for celiac disease, you must not begin a gluten free diet or even cut down on gluten consumption. If you do, you risk invalidating the testing. Some healing would take place in the villi and fewer antibodies would be produced. The Mayo Clinic Guidelines for a pretest gluten challenge is the daily consumption of 2 slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to blood antibody testing and for at least two weeks leading up to an endoscopy/biopsy.

Hi Trent , thanks for that response. Much appreciated. I’m not sure which of the two tests it was to be honest. I think they are using the initial test as the positive where I was definitely consuming regular amounts of Gluten, to be honest it would have been within the 2 slices scale with ease knowing my diet at that time. 
 

 

[trents]

11 minutes ago, Jnapier said:

Hi Trent , thanks for that response. Much appreciated. I’m not sure which of the two tests it was to be honest. I think they are using the initial test as the positive where I was definitely consuming regular amounts of Gluten, to be honest it would have been within the 2 slices scale with ease knowing my diet at that time. 
 

 

An endoscopy with biopsy is an outpatient procedure, often with sedation. Additional antibody testing would only require a simple blood draw. Either way, continue to consume gluten until the day of the test.

[Jnapier]

Quick update folks. Test results back and after 4 weeks off Gluten i’m back down to 4 instead of 8.2 with low Folic Acid which was high. Waiting to actually speak to the doc. 
 

Have a fantastic Christmas all. 

[cristiana]

Thanks so much for keeping us posted, Jnapier.  Do let us know what your doctor says. In the meantime, have a very Happy Christmas!🎄

Edited December 21, 2022 by cristiana

[Jnapier]

Hello everyone, just a quick update and again your views which are much appreciated. 
 

Today I was at a loss during work (I work all over the UK) so I had a sandwich (Gluten) as there wasn’t anything else and I was getting beyond hangry. I had it and after a concentrated fruit shot. (5 fruits in a small bottle promising super powers, you know the thing) 
 

My tummy is bloated big time! Fruit shot or Gluten?! 
 

As you can see from my previous post before Christmas my doc said I was Gluten Intolerant and not Celiac. During Christmas I have had bits and bobs and been fine but today I’m ready to pop! 
 

Part of me wants the Biopsy to know for sure however what if that doesn’t show damage and I am Intolerant and then by being casual every now and then with Gluten I end up damaging myself later in life. Reading about the potential damage is scary and I think magnified because a relative is currently having Biopsy’s for Pancreatic / Liver cancer which has came on within a matter of weeks. 

Sandwich, Fruit shot or just one of those days where you are full of hot air?! 
 

Happy New Year. 
 

 

 

[trents]

6 minutes ago, Jnapier said:

Sandwich, Fruit shot or just one of those days where you are full of hot air?

Yep, those are the choices. But again, if you decide to go in for actual testing again for celiac disease you would need to go back to eating regular amounts of gluten for 6-8 weeks (antibody testing) or two weeks (endoscopy/biopsy). Until you create the correct conditions for testing so as to not render the tests invalid you will always be guessing. And if you do have celiac disease but have no official dx you may find it difficult to be consistent with the gluten-free diet. It's easy to rationalize the symptoms are due to something else which leads to cheating on the gluten-free diet.

[Jnapier]

When my score was 8.2 symptoms were not that severe (and again I feel for people with the very severe and hate even moaning about my situation) so I would be willing to go back to a G diet for a piece of mind, but would I get it. Probably, maybe not. 
 

Just wish it was easy. On the 17th December when the doc said I was “Sensitive” I had the odd pint of Guinness without bloating etc. So due to this increased bloat I feel like I’m back to square one mentally. 
 

Regardless I’m going back to being strict but it was comforting to know I could have a Guinness or something every now and then. 

 

 

[knitty kitty]

@Jnapier,

How about doing a genetic test to see if you have any genes for Celiac Disease?  

It's noninvasive, and you don't have to consume gluten.  

Having genes for Celiac Disease does not mean that you have active Celiac Disease.  Having Celiac genes means that you have the potential to develop Celiac Disease.  

If you do have Celiac genes you can adopt a gluten free diet now and lessen the chances of developing Celiac later.  

Knowing your genetic risk for Celiac will undoubtedly influence your son's susceptibility for Celiac, too.

[Wheatwacked]

You are lucky.  I was diagnosed with prostate hypertrophy at age 21 in 1972. Did not start gluten free until age 63 so I suffered to various degree all those years. The prostate formulas do help. Once I started GFD it was only three months before I did not need another bottle of prostate formula and about 18 other complaints I had to live with all my life, started clearing. 

Avoid folic acid (synthetic B9), eat lots of folate (B9). Don't supplement vitamin E but food sourced is good.

Get lots of vitamin D to raise your plasma level. It will help the hangry and moderate the autoimmune system. Lots of B complex excluding folic acid for energy production.

Quote

     The Selenium and Vitamin E Cancer Prevention Trial (SELECT) found that vitamin E taken alone increased the risk of prostate cancer. The risk continued even after the men stopped taking vitamin E.    

     A 10-year study showed that the risk of prostate cancer was increased in men who took 1 milligram (mg) supplements of folic acid. However, the risk of prostate cancer was lower in men who had enough folate in their diets  Prostate Cancer Prevention (PDQ®)–Patient Version

While transitioning to GFD eat whatever you want instead of GLUTEN. There will be a period of crazy cravings. Resist, it will pass.

[Jnapier]

Thanks for all your messages guys, much appreciated. 
 

So I called my doc yesterday and asked if the testing scenario was indeed correct in regards to the second test where I was asked to stay Gluten-Free for four weeks. 
 

The doc went a bit quiet and said, “unfortunately that’s incorrect so we need you to now eat G for 4 weeks to have another test” 

To be fair he was new my case as I had specifically asked to speak to a different doc. 

I know here in the UK we are under huge stresses and strains when it comes to our pathetic government not looking after the NHS so I’m not upset or anything. 
 

Will update again in 4 weeks. 

[Wheatwacked]

Oh, and be wary of the PSA test for prostate cancer. There are many other causes for high PSA the doctors forget to tell you to avoid before the blood test. Chances of nerve damage from the biopsy are 20%. Chances of you dying from prostate cancer during your lifetime 1%.  Even though my prostate had shrunk the specialist wanted to do a biopsy but neither my doctor nor the specialist mentioned the low specificity of the test. Prostititis is one.  What are Some Other Causes of a High PSA?