Please Help!

[mandapandapoo]

I just joined, but I really need some help and information. So I'm 18, and have always had problems with my stomach, chronic nausea being the worst. I'm actually here for my Mum though. Since 2008, she's had problems with diarrhea and stomach pain. This was triggered by the stress of my dad's father and her father being ill at the same time. Lately, in the last seven weeks or more, her pain has been severe. She got an ultrasound because it was suspected she had gallstones, but there was nothing visible, hower the girl doing the scan said the had a lot of acid or gas in her stomach that made it difficult to see her kidneys and things? She had a strange attack where she got quite dizzy, hot, ringing in her ears, then she vomited and recovered. She's had a few blood tests that came back normal, but the nurse she spoke to said she had requested a celiac blood test done a while back that was never done. We've been waiting for the results for 3 weeks, as they have to go to a lab quite far from us. She's had a few strange symptoms too

 

Sores on her feet that are so painful it's hard for her to walk. These come and go. Doctors and podiatrist have no idea what these are

Mouth ulcers

Feeling of hair around her toes. This only happened a few times and then went away

She always had painful earaches as a child

The last 4 days she's been feeling occasionally nauseated

Loss of appetite

Restless legs

 

Could these symptoms be celiac disease? We've asked for a referral to see a GI but have been refused (NHS) Does anyone have any idea what's up with us?

 

[moosemalibu]

Hi and welcome!  I am unsure if your mom has had the celiac panel or not? Are you just waiting on the results? She definitely could have her symptoms explained by Celiac's Disease. There are over 300 symptoms. I hope you get your answer soon and that the blood tests that were ordered were very specific for Celiac's Disease. Do you happen to know what tests were ordered specifically?

[KCG91]

Hey. I don't know much about the symptoms (there are over 300 associated with Coeliac) but with regards to battling the NHS for testing and referrals - if I read it correctly and they haven't yet run a coeliac panel on you both, get back to your GP and keep asking. Demand it. Coeliac UK is campaigning fairly visibly at the moment for GPs to run tests more often so check out their website for advice. If both of you get tested and one is positive they should take the other more seriously as there's a 10% chance of immediate relatives also having Coeliac (see Coeliac UK for that too!). If the blood tests come back positive they have to make a referral to a gastro for you (but as ever with the NHS, chase this up ) 

The non-gastro symptoms your mum describes - look up peripheral neuropathy/neurological problems (Not as scary as it sounds!). Where in the UK are you? (I'm in Scotland). 

[KCG91]

Hi and welcome!  I am unsure if your mom has had the celiac panel or not? Are you just waiting on the results? She definitely could have her symptoms explained by Celiac's Disease. There are over 300 symptoms. I hope you get your answer soon and that the blood tests that were ordered were very specific for Celiac's Disease. Do you happen to know what tests were ordered specifically?

 

Jamie - jinx!!

[moosemalibu]

 

Jamie - jinx!!

haha Great minds think alike!

[mandapandapoo]

 

Jamie - jinx!!

 

Hey. I don't know much about the symptoms (there are over 300 associated with Coeliac) but with regards to battling the NHS for testing and referrals - if I read it correctly and they haven't yet run a coeliac panel on you both, get back to your GP and keep asking. Demand it. Coeliac UK is campaigning fairly visibly at the moment for GPs to run tests more often so check out their website for advice. If both of you get tested and one is positive they should take the other more seriously as there's a 10% chance of immediate relatives also having Coeliac (see Coeliac UK for that too!). If the blood tests come back positive they have to make a referral to a gastro for you (but as ever with the NHS, chase this up ) 

The non-gastro symptoms your mum describes - look up peripheral neuropathy/neurological problems (Not as scary as it sounds!). Where in the UK are you? (I'm in Scotland). 

 

We're in Scotland too! She's had a celiac blood test, not sure which ones exactly. I had a blood test for celiac ordered by my GI, but it came back negative. I tried a gluten free diet for a few weeks, but still felt bad. Not knowing you have to be on it for a while to see results and everything about cross contamination. I'll check out the website. What blood tests should we be demanding?

[KCG91]

Interesting! There's another user on here, MGR, also in Scotland. 
About testing, here are the NICE Clinical guidelines for diagnosis - see page 10 for testing: Open Original Shared Link

As you say, do make sure you're eating enough gluten before testing, I think it's 2 slices of bread per day for six weeks. If you can bear it, better to overdo it than hold back in order to get clear results.

I think it took me maybe six weeks to feel better but it really varies for everyone. 

 

I sound bossy suggesting that you 'demand' tests but really, it's your right to know what is up and a lot of doctors don't seem 'aware' of this. In my experience, younger doctors are often more aware as medical training is changing and basically more recent graduates seem to know more about it (I have some med student friends - they are actually taught to expect the patient to become an expert on the disease and to be their own advocate!) Having said that, my current GP is an older guy and he is very well informed so I've been lucky there. 

[mandapandapoo]

Interesting! There's another user on here, MGR, also in Scotland. 

About testing, here are the NICE Clinical guidelines for diagnosis - see page 10 for testing: Open Original Shared Link

As you say, do make sure you're eating enough gluten before testing, I think it's 2 slices of bread per day for six weeks. If you can bear it, better to overdo it than hold back in order to get clear results.

I think it took me maybe six weeks to feel better but it really varies for everyone. 

 

I sound bossy suggesting that you 'demand' tests but really, it's your right to know what is up and a lot of doctors don't seem 'aware' of this. In my experience, younger doctors are often more aware as medical training is changing and basically more recent graduates seem to know more about it (I have some med student friends - they are actually taught to expect the patient to become an expert on the disease and to be their own advocate!) Having said that, my current GP is an older guy and he is very well informed so I've been lucky there. 

 

I'm reading the pdf just now. Would I be able to post the results of the blood tests here when we get them? Also, have you ever heard of too much acid thing on a ultrasound scan? I thought maybe my mum had gotten mistaken for gas.

[moosemalibu]

Absolutely you can post the results. I have never heard of that. Has the ultrasound been sent to a physician for interpretation? Perhaps the technician misspoke?

[KCG91]

Absolutely, stick them up in this section of the forum in their own thread and you'll get loads of help. When you get them, whether in person or over the phone, request a paper copy of the results. This will give you some reference and also will give you the tests' reference ranges. 

[mandapandapoo]

Absolutely you can post the results. I have never heard of that. Has the ultrasound been sent to a physician for interpretation? Perhaps the technician misspoke?

 

I think so too, I'll ask my mum to ask her doctor for the ultrasound report to see exactly what she said. Thank you for the help.

 

Absolutely, stick them up in this section of the forum in their own thread and you'll get loads of help. When you get them, whether in person or over the phone, request a paper copy of the results. This will give you some reference and also will give you the tests' reference ranges. 

 

I'll definitely do that, thanks