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KelBelle

Does This Sound Like Celiac Related Lymphoma?

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For years now I have had a problem with this rather large lump in my abdomen. It never presents itself unless I am about to get or am already having digestive symptoms of ingesting gluten. It is on the right side just below my ribcage. It is pretty solid and can get as big as a softball in diameter. It isn't round though. I guess it is sort of bean shaped a little. At times it has caused me severe pain too. I have had a CT scan and an ultrasound which showed nothing though. I recently saw a surgeon and he would only speculate that maybe it was a fatty cyst or a very unusual hernia. He did not care at all that it is always in connection with digestive symptoms of gluten ingestion.

Does this sound like it could potentially be lymphoma? Whatever it is, it is directly related to gluten, but no one seems to care and it's concerning me.

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If this is something that you are noticing in conjuction with a glutening then the chances of it being lymphoma are really pretty slim. Many of us do get swellings, they can be from gas in the intestines or muscle spasms or any number of things. If your doctor has been on top of this, and it sounds like he has, I would not be overly concerned. Lymphoma also is found commonly found in blood work, which I am sure if your doctor had ordered a CT and Ultrasound was done also.

If this keeps up even when you are following your diet strictly and/or becomes more painful be sure of course to go back to the doctor for reassessment.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks! The lump never disappears really. It just becomes extremely aggravated with gluten ingestion and pain subsides when not being exposed to gluten. I have never had any blood work done when anyone was checking out the lump though. The CT scan was about 3 years ago, the ultrasound was maybe two years ago and two months ago the surgeon just sort of poked around. I'll keep a closer eye on how things go and maybe ask for them to check on that when I have my Vitamin D levels checked again. What would they check for in blood work that would reveal a problem related to that? Maybe I can check other blood test results and see what they say and avoid an added expense.

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Chances are good that this is a hernia as your doctor has previously told told you. The spasms that are caused by the intestines attempts to rid you of the gluten that has been injested can be very violent. I am giving you a good link to lymphoma info. Lymphoma is a cancer of the lymph system, it would cause swelling in the lymph glands not to my knowledge in the belly. The blood tests that are done routinely like the CBC and such would likely show an indication if lymphoma was present. Do continue to persue this with your doctor until he gives you an answer you are comfortable with.

I can symptathize because I had the same thing going on. I had what felt like a swelling on the right side that went from under my ribs down into my frontal hip area. I was also fearful of it being cancer as I had been undiagnosed and was sick for so long. After all the testing, I had internal and external ultrasound, blood tests and endo and colonscopy all they found was that my large intestine was thickened in reaction to something, but of course couldn't tell me what. I did Enterolab testing and after the results came back I eliminated soy, within a week that swelling had resolved completely. I can't of course say that anything like that for sure is going on with you but do want to let you know that these fears are normal and expected.

I hope you get some resolution soon and are able to put the cancer specter behind you for a while.

Here is the Lymphoma link:

http://www.lymphomainfo.net/tests/bloodcounts.html


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Maybe it's reactive hyperplasia, where lymph tissue starts growing where it shouldn't in response to inflammation and irritation. I have a bunch of little things here and there, though none in the abdominal region. I've had a large one in my underarm for decades and no one seems to know what it is, or care. When I had a mammogram, there was one there that I had to have biopsied, it was only a blob of lymph tissue. Now I have them on my thyroid. I think they start to shrink when I cut out the caffeine, so I'm trying to do that. I don't know how concerned we should be about these kinds of things, but doctors don't seem to think they are anything. I would still let your doctor know, though, so you can get some educated (?) advice from a professional.

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Maybe it's reactive hyperplasia, where lymph tissue starts growing where it shouldn't in response to inflammation and irritation. I have a bunch of little things here and there, though none in the abdominal region. I've had a large one in my underarm for decades and no one seems to know what it is, or care. When I had a mammogram, there was one there that I had to have biopsied, it was only a blob of lymph tissue. Now I have them on my thyroid. I think they start to shrink when I cut out the caffeine, so I'm trying to do that. I don't know how concerned we should be about these kinds of things, but doctors don't seem to think they are anything. I would still let your doctor know, though, so you can get some educated (?) advice from a professional.
I have never heard of that before. Very interesting. Thank you for the information regarding that. I have a number of appointments next month at Rush University's Celiac center and perhaps they will be able to pinpoint what is going on.

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It might be a lipoma. Ask the doctor.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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