Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help!

mandapandapoo

Recommended Posts

mandapandapoo Rookie
mandapandapoo
Posted

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? :wacko:

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


moosemalibu Collaborator
moosemalibu
Posted

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 Enthusiast
KCG91
Posted

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 Enthusiast
KCG91
Posted

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 Collaborator
moosemalibu
Posted

 

Jamie - jinx!!

haha Great minds think alike! :)

mandapandapoo Rookie
mandapandapoo
Posted
  • Author

 

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 Enthusiast
KCG91
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mandapandapoo Rookie
mandapandapoo
Posted
  • Author

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 Collaborator
moosemalibu
Posted

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 Enthusiast
KCG91
Posted

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 Rookie
mandapandapoo
Posted
  • Author

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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,650
    • Most Online (within 30 mins)
      7,748
    Alexandersgirl
    Newest Member
    Alexandersgirl
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
    • Julie 911
      Medication

      By Julie 911 · Posted

      Good day! New members here and I have a question about medication. My gastroenterologist made me stop some medication during the gluten challenge beforenthe screening test but I have a little surgery tomorrow and I need to know if I can use tylenol for half a day or if it will give me false results using it.   Thanks 
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.