Desperation Point

[nick]

I am new here, and not sure I'm in the right place but seriously hope I am.

A close friend of mine has been ill for over two years. He suffers from severe exhaustion (falling asleep at the most inappropriate times), and in last eight months suffered from a persistant rash which forms a band across the bottom of his back (this is almost leathery to touch, and extremely itchy) and also a rash which occasionally spreads down his arms and legs. His ESR count was 99 when his gp finally referred him to the hospital for further tests. I have trawled the internet and explored the idea of him having ME, and various other illnesses. Finally after much research I began to wonder whether he had an undiagnosed intollerance to gluten....every symptom seemed to fit perfectly. I became more convinced when he had a malt drink and instantly wanted to be sick.

However, having finally seemingly finding the cause the hospital conducted a tumor pointer blood test and also a barium meal scan, because of his high ESR count.

Then this week he went for his results which have left us completely devastated.

The specialist told him his blood test showed an extremely high Igg count. He was told this was an indication that he had Myeloma an incurable cancer of the blood. Apparently the body scan had shown nothing significant, but possibly some sort of scarring on the intestine which in itself was not relevant.

The other two antibody levels IgA and one which I cannot remember the name of were low, apparently because the Igg was doing so much work.

After many tears we both decided to look back on here for some hope, and it still keeps throwing us back to the gluten intolerance. Could the drs be wrong? They are conducting some xrays this week to look for bone lesions and a bone marrow biopsy to see if the myeloma is in the bone marrow.

I have trawled the net for possible misdiagnoses for celiac disease and although it says its often mistaken for many other diseases or illnesses , it does not suggest one of these is myeloma.

I am probably in denial here and clutching at straws but would desperately love to hear that this Igg level could be an indication of celiac disease and not cancer. At this stage we are only going on blood results but all his symptoms fall in with celiac disease perfectly and very few with myeloma.

I hope someone can offer me any information that might help.

[wolfie]

I don't know much as I just got a positive blood test myself, but maybe your friend should get a 2nd opinion. The Drs could very well be wrong. It wouldn't hurt to get the second opinion, especially before the bone marrow test. How high was the IgG?

Good luck.

[tarnalberry]

given how uncommon it is to check for the celiac antibodies, it's almost certain that the IgG they tested for was not anti-gliandin IgG. (IgG is a class of molecule, you can have IgG antibodies to many different substances. Including your own body tissue.) At this point, there's plenty of reason for the doctors to continue their testing, but if he's willing to try going gluten free himself, just to see if it'll help, it certainly won't hurt.

[nettiebeads]

I agree with Tarnalberry. Continue with what the drs recommend, but try the gluten-free diet also, since the diet won't interfere with what the drs have planned. And who knows, it may provide some relief for your friend.

Can't hurt.

[Hallie Davis]

I am new here, and not sure I'm in the right place but seriously hope I am.

A close friend of mine has been ill for over two years. He suffers from severe exhaustion (falling asleep at the most inappropriate times), and in last eight months suffered from a persistant rash which forms a band across the bottom of his back (this is almost leathery to touch, and extremely itchy) and also a rash which occasionally spreads down his arms and legs. His ESR count was 99 when his gp finally referred him to the hospital for further tests. I have trawled the internet and explored the idea of him having ME, and various other illnesses. Finally after much research I began to wonder whether he had an undiagnosed intollerance to gluten....every symptom seemed to fit perfectly. I became more convinced when he had a malt drink and instantly wanted to be sick.

However, having finally seemingly finding the cause the hospital conducted a tumor pointer blood test and also a barium meal scan, because of his high ESR count.

Then this week he went for his results which have left us completely devastated.

The specialist told him his blood test showed an extremely high Igg count. He was told this was an indication that he had Myeloma an incurable cancer of the blood. Apparently the body scan had shown nothing significant, but possibly some sort of scarring on the intestine which in itself was not relevant.

The other two antibody levels IgA and one which I cannot remember the name of were low, apparently because the Igg was doing so much work.

After many tears we both decided to look back on here for some hope, and it still keeps throwing us back to the gluten intolerance. Could the drs be wrong? They are conducting some xrays this week to look for bone lesions and a bone marrow biopsy to see if the myeloma is in the bone marrow.

I have trawled the net for possible misdiagnoses for celiac disease and although it says its often mistaken for many other diseases or illnesses , it does not suggest one of these is myeloma.

I am probably in denial here and clutching at straws but would desperately love to hear that this Igg level could be an indication of celiac disease and not cancer. At this stage we are only going on blood results but all his symptoms fall in with celiac disease perfectly and very few with myeloma.

I hope someone can offer me any information that might help.

[Hallie Davis]

I am new here, and not sure I'm in the right place but seriously hope I am.

A close friend of mine has been ill for over two years. He suffers from severe exhaustion (falling asleep at the most inappropriate times), and in last eight months suffered from a persistant rash which forms a band across the bottom of his back (this is almost leathery to touch, and extremely itchy) and also a rash which occasionally spreads down his arms and legs. His ESR count was 99 when his gp finally referred him to the hospital for further tests. I have trawled the internet and explored the idea of him having ME, and various other illnesses. Finally after much research I began to wonder whether he had an undiagnosed intollerance to gluten....every symptom seemed to fit perfectly. I became more convinced when he had a malt drink and instantly wanted to be sick.

However, having finally seemingly finding the cause the hospital conducted a tumor pointer blood test and also a barium meal scan, because of his high ESR count.

Then this week he went for his results which have left us completely devastated.

The specialist told him his blood test showed an extremely high Igg count. He was told this was an indication that he had Myeloma an incurable cancer of the blood. Apparently the body scan had shown nothing significant, but possibly some sort of scarring on the intestine which in itself was not relevant.

The other two antibody levels IgA and one which I cannot remember the name of were low, apparently because the Igg was doing so much work.

After many tears we both decided to look back on here for some hope, and it still keeps throwing us back to the gluten intolerance. Could the drs be wrong? They are conducting some xrays this week to look for bone lesions and a bone marrow biopsy to see if the myeloma is in the bone marrow.

I have trawled the net for possible misdiagnoses for celiac disease and although it says its often mistaken for many other diseases or illnesses , it does not suggest one of these is myeloma.

I am probably in denial here and clutching at straws but would desperately love to hear that this Igg level could be an indication of celiac disease and not cancer. At this stage we are only going on blood results but all his symptoms fall in with celiac disease perfectly and very few with myeloma.

I hope someone can offer me any information that might help.

[Hallie Davis]

I'm sorry to tell you, Nick, but the study of Jurnanik et al (at Open Original Shared Link ) indicates that untreated celiac disease may result in multiple myeloma. Your friend needs further testing for both!

Since gluten sensitivity may not show up in the serum blood tests, he should probably have the fecal antibody test and HLA testing. These are both offered by Enterolab. If either of these is positive (and considering his reaction to the malt beverage), he should probably go gluten-free.

The next test he should have with regard to myeloma is immunofixation and electrophoresis of blood. If this is positive, he should find an oncologist who specializes in multple myeloma to further clarify whether he has multiple myeloma, or just the precursor stage, which is monoclonal gammopathy. However, since his IgG is that high, together with low IgA and IgM, chances are that it is indeed multiple myeloma.

[cyberprof]

Nick, sorry about your friend.

H**** beat me to it but there may be a connnection (although I believe that the IgG that they test for in celiac is a different test than that for myeloma). Here's a link to some info that I posted before. Open Original Shared Link

As you can see, I also have a connection to myeloma, as my husband is in the early stages.

But don't dispair. Docs have made tremendous strides in MM treatment in the past 4 years since my hubby was diagnosed. There is a lot of work going on and it is no longer an automatic death sentance. The folks at the Multiple Myeloma Research Foundation Open Original Shared Link have survivor buddies and there are support groups. Don't let your friend give up! The life expectancy figures are misleading because they are for people who were diagnosed more than five years ago and things are better.

Geraldine Ferraro has had MM for over 5 years, 10 years- not sure exactly how many. I saw her on TV last week and she looks great! She is doing a lot of interviews for the elections and is healthy.

If it is myeloma, going gluten free may help slow it down. See the links in the other message that I posted.

Feel free to PM me if you have more questions.

~Laura

[coltoot]

Please look up "cellulitis" - a skin rash. My grandmother was just diagnosed with this and it is a serious problem. Not to alarm you, but it sounds very similar to what you are describing. It forms "in a band" and is itchy, etc... I also believe my grandmother has undiagnosed celiac (not sure if the two are related though).

I wish you and your friend lots of luck! My father has been diagnosed with MDS and PNH for about 3 years now. He is able to live a wonderful life! He is on a new medication for PNH which keeps his blood levels pretty normal. I hope things turn out okay.

[Mtndog]

Nick- I'm sorry for everything your friend and you have been through. I agree- he should continue with all the tests but it couldn't hurt to go gluten-free as well.

I hope the outcome is good.

[dockfl]

Dear Coltoot,

I am curious if your father (who has MDS & PNH) also has Celiac Disease. I am a severe celiac (traces of gluten in grain alcohol and white vinegar renders me ill for 2-3 months) who has had active auto-immunity for 38+ years. I am still super unwell and am pretty sure PNH is about to be diagnosed. Just curious if your father has both PNH & celiac disease.

Thanks!

dockfl

Please look up "cellulitis" - a skin rash. My grandmother was just diagnosed with this and it is a serious problem. Not to alarm you, but it sounds very similar to what you are describing. It forms "in a band" and is itchy, etc... I also believe my grandmother has undiagnosed celiac (not sure if the two are related though).

I wish you and your friend lots of luck! My father has been diagnosed with MDS and PNH for about 3 years now. He is able to live a wonderful life! He is on a new medication for PNH which keeps his blood levels pretty normal. I hope things turn out okay.