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Member Since 20 Dec 2010
Offline Last Active Dec 24 2010 07:52 PM

Posts I've Made

In Topic: Anyone Diagnosed With Behcet Disease As Well? Lymphoma

21 December 2010 - 06:36 AM


I had symptoms of Behcet's for 20 years. it was mentioned to me several times and docs always said it was too rare. My immunologist tested me for it without me knowing what I was being tested for and I never mentioned most of the key symptoms to her. I have the genetic marker for it and most of the symptoms.
I was gluten free before they tested me for Behcet's. We have also done MRI's of my body for the ankylosing spondylitis and that is evident as well.

The doc wanted me to have the GI series and bowel study the next day. I couldn't do it for 4 days because I already had an MRI scheduled. I have responded well to the diet. I have heard that Behcet's should stay away from dairy. Have you ever heard of that?
I don't miss gluten at all, it is well worth it. Dairy I would miss! Is gluten challenge a gluten-free diet? Or is it something else? I haven't heard of that before.

Were you on the gluten challenge when they started thinking Behcets? A response to gluten can cause full body inflammation also. How have you responded to the diet? If you are responding well to the diet keep with it. False negatives on biopsy are not uncommon and since your biopsies were negative the doctor may be trying to rule out anything else. Try not to worry, if the doctor really thought you had lymphoma I think he would have those biopsies done quickly. Enjoy your holidays and try not to worry about it, hard I know as I have been there. Just stick strictly with the diet and I am hoping that will take care of your issues.

In Topic: Anyone Diagnosed With Behcet Disease As Well? Lymphoma

20 December 2010 - 11:26 PM

thanks very much for your prayers! I don't think they are trying to cause frustrating. It is just the season when a lot of things are closed and I think they are waiting for me to finish testing, etc.,
I wish I could have thought of all these questions at the time, but it was the last thing in the world I expected to hear.

In my opinion, if they are throwing around the idea that you have lymphoma, then why in the he** are they making you wait so long to get an answer?! It seems ridiculous for them to keep you in limbo, and certainly the stress is no good for you. I'm so sorry you're having to deal with this...I'll keep you in my prayers.

In Topic: Anyone Diagnosed With Behcet Disease As Well? Lymphoma

20 December 2010 - 04:52 PM

I was diagnosed with Celiac (by genetic testing) in July and immediately went on the diet in a big way. I was diagnosed with Behcet Disease a couple of months ago. Gastro doc had me go back on gluten for a few weeks and then did an upper endoscopy. Doc said I was inflamed all the way through my body, as far as endoscopy went and they did a lot of biopsies. At my follow up doc said surprisingly celiac biopsies came back negative or whatever....and was surprised....hoped by the looks of my endoscopy that I had Crohns but feared lymphoma and ruling out Crohns would take us the next step to the lymphoma diagnosis. An upper GI series was done last week and a small bowel test. Doc who did those said there were no signs of Crohn's, which I already anticipated.

I don't understand what the doc saw that really made her fear lymphoma. I am praying that what she is seeing is Behcet's Disease, since it is so rare many docs have never seen it first hand. I had outbreaks on my face last spring several times, which looked like staph infections. She said by the photos of my flares that it was definitely Behcet's.

I am having colonoscopy after Christmas and seeing doc after New Year to review everything.

For past couple of years I have had recurrent fevers (normal body temp of 96.7) and what I described as a full body inflammation. No amount of pain meds or otherwise helped, only steroids or anti-inflammatories. The only time I wasn't getting constant sweats, chills, etc., is when I was on steroids or anti-inflammatories. also, lots of lung issues, wheezing which also worsened with inflammation. Behcet's is vascular. I am also diagnosed with the other HLA-B27 disease Ankylosing Spondylitis, now. Have been diagnosed for quite some time with hypo-thyroid and fibromayalgia. My immunologist started this latest range of testing and said I am "a very sick person".

1. Would several auto-immune diseases suppress white blood cell counts, which would ordinarily be raised to fight cancer?

2. Could Behcet's look LIKE cancer inside my body?

3. I am guessing my biopsied tissues were put on ice as a nurse friend told me probably happened and that the doc has ordered them to be biopsied for cancer. Does anyone know if this could be the case?

4. I am varily terrified. I don't think the doc would have brought up the lymphoma topic without reasonable certainty. Still, I have several weeks without knowing and holiday to get through. I would rather know the worst, than be in limbo. I have read that this type of lymphoma has only a 20% survival rate at 5 years. Is it treatable?

5. What does lymphoma LOOK LIKE through the endoscopic camera?

Thanks very much for any information that anyone can offer or links to visit to reasearch.

Welcome to the board. How long have you been diagnosed? Are you new to the diet?
Behcet disease and celiac do have some similiar symptoms and both are autoimmune. If your celiac the diet should relieve a lot of your symptoms, if not all, but it can take some time. Celiac can have an effect on the lymph system. I had swollen glands in my neck and groin area for years that finally went down once I had been on the diet for a while. I am assuming that your doctor has done some blood tests, I think those will tell you whether you may be dealing with lymphoma. There are some folks that are much more knowledgeable with medical issues on the board and hopefully they will chime in and give some more info.
Ask any questions you need to. I hope your feeling better soon.

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