[Anna'smom]

I am very worried about my husband. About 2 1/2 years ago he was diagnosed with Waldenstrom's (Non-Hodgkins Lymphoma) while being tested for the cause of body bone/joint pain. Instead of finding the answer to his body pain, he ended up with the cancer diagnosis. In addition to the body pain, he started having severe pain and numbness in his left foot. He said it feels as if a semi truck ran over his foot; he also feels like someone tightened a rubber band around his toes to the point of them wanting to pop off. The oncologist has not been able to find a cause for this; he does not feel that this or his recent diagnosis of osteopenia has anything to do with the cancer.

In the last few months, his right foot became affected, as well. Now his right foot is as bad as his left foot. He has also noticed numbness going up to his knees and periodic numbness/tingling in this hands. Yesterday, his hands turned white briefly while being outside in the cold. He is now cold all of the time, feeling as if he's standing on a block of ice. He has a difficult time getting warm. He has been piling on the blankets at night, but then breaks out in night sweats. I do know that the night sweats can be due to the cancer.

He does not have to do anything for the cancer at this time. The doctors check his blood levels every six months; they say they do not need to do any treatments unless he either gets his Igm number to a certain point, or he becomes symptomatic. He will see the doctor in a couple of days to discuss what is going on. My hubby did start a Vegan diet about six months ago after reading the China Study. His Igm number did miraculously go down significantly three months after the diet change. The last two tests, however, went back up to where they originally were. The doctors think that the low test was a false one. I don't know what to think. I'm just sooo incredibly worried about him. Keep in mind he is only 48. My in-laws have suspected Celiac all along; the test came back negative, but I know that false negatives are very common.

What do you think???? Does his profile of symptoms sound like they could be attributed to Celiac disease? I'm sorry for rambling on, I just want to get him help. He's in a lot of pain (though he is incredibly strong and optimistic). Thank you so much for any help!!!

Laura

[Sailing Girl]

Hi Laura,

I don't know whether it's Celiac. But the symptoms you mention -- joint pain, numbness/tingling in extremities (due to nerve damage), and osteopenia are common in Celiacs. Celiacs also are at far greater risk for lymphoma than the general population.

You're right -- false negatives are extremely common on both the blood tests and the biopsy for Celiac. I'm curious -- you say your inlaws have suspected Celiac all along. Does it run in his family? If so, I'd say there's a good chance he has it too. Many of us don't get gastrointestinal symptoms until other body systems have been damaged considerably.

Have you/he considered giving a gluten-free diet a trial? You should complete any medical testing you wish to have done before going gluten-free, but there's no reason not to try the diet.

Nerve damage like your husband has could take a while to clear, but he'd likely notice some difference fairly quickly if gluten is the problem. A friend of mine with neuropathy in both his feet tried gluten-free for a week (on my advice) and noticed that the neuropathy improved. (He unfortunately went back on gluten -- he didn't want to give up his beer, and his doctor said there was no connection, so he felt validated in making that decision. His neuropathy got significantly worse after that).

I hope you find some answers. But there's no reason not to try the diet, even if his testing for Celiac is negative. You may find your answer in the diet rather than in medical testing.

Sailing Girl

[ang1e0251]

[quote name='Anna'smom' date='Mar 11 2009, 09:24 AM' post='516834']
Yesterday, his hands turned white briefly while being outside in the cold. He is now cold all of the time, feeling as if he's standing on a block of ice.


This part sounds like Raynaud's. I was just reading on the NIH sight about it. Type it into your search and many sources will come up.

I agree that going on the gluten-free diet might prove beneficial. It can't hurt either of you and he may find some relief in it.