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Anyone Diagnosed With Behcet Disease As Well? Lymphoma


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9 replies to this topic

#1 **bricelbehcetlymphoma

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Posted 20 December 2010 - 03:08 AM

First diagnosed with Celiac then Behcet Disease. Now doctor thinks I may have lymphoma. I was wondering if possibly what the doc perceives to be lymphoma could actually be a manifestation of Behcet Disease?
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#2 ravenwoodglass

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Posted 20 December 2010 - 11:19 AM

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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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#3 **bricelbehcetlymphoma

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Posted 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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#4 Looking for answers

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Posted 20 December 2010 - 07:14 PM

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.
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 – Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

#5 **bricelbehcetlymphoma

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Posted 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.


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#6 ravenwoodglass

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Posted 21 December 2010 - 03:13 AM

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.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 **bricelbehcetlymphoma

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Posted 21 December 2010 - 06:36 AM

Ravenwoodglass,

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.
Thanks!


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.


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#8 ravenwoodglass

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Posted 21 December 2010 - 08:31 AM

Ravenwoodglass,

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.
Thanks!


The gluten challenge is when we have been gluten free and we need to have a biopsy or bloodwork so we have to go back to eating gluten. After a pretty short time gluten free the body stops making antibodies and it takes up to 3 months back on gluten for them to show up, if they are going to.
I am glad the diet is helping. Stick with it. I hope the doctors can figure out what else, if anything, is going on and that you are feeling better soon.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#9 sahm-i-am

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Posted 03 January 2011 - 04:35 PM

I'm sorry you are going through all this stress. 8 months ago (seems like yesterday) the doctors told me I had lymphoma and sent me off to surgery (abdominal lymph nodes) and prepped me for chemo. Sure my blood work was wacky - but show me a Celiac's who's isn't! I questioned the doctors, sought a second opinion and they sent me to be tested for Celiacs. Low and behold, that was causing all my problems. 6 months gluten free and my lymph nodes are back to normal as well as blood counts and malnutrition. No wonder I lost 25 lbs - it wasn't cancer, just celiac! But the month I 'lived' with cancer was pure he**. Waiting is the worst. I hope you had a good holiday and have found out something by now. I remember waiting 2 weeks for Mayo to biopsy my slides - we thought they lost them! :blink:
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#10 alevoy18

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Posted 06 January 2011 - 12:26 PM

Hi,

I am sorry you have had to go through this. I was diagnosed with Celiac Disease in November 2009 after being told I possibly had Lymphoma. I initially had a pacemaker put in (I was 22, I am 24 now) because my heart rate was slow (20 bpm at night) and would stop sometimes. At the time they had no idea what was wrong, but it turned out that Celiac caused autonomic damage as my BP is very low as well.

The Lymphoma business came because my Lymphocytes were extremely low and I had a 3 x 2cm lymph node in my armpit, as well as 20+ lymph nodes in armpit/neck over 1cm. An FNA was done that came back inconclusive due to bad sample and my doctors decided to hold off, since I was diagnosed with Celiac in the middle of all this, that maybe Celiac has caused this. To this day the lymph nodes are still enlarged, but because I am not having any classic signs of Lymphoma my docs have stopped doing more tests or FNA's until something else happens.

I think Celiac, and in your case, Behcet, can work in mysterious ways. If it makes you feel better, I did some looking around and found this:

There is however a set of clinical findings that a physician can rely upon in making a tenative diagnosis of the disease; essentially Behçet's disease does not always follow the International Study Group guidelines and so a high degree of suspicion for a patient who presents having any number of the following findings, is necessary:

mouth ulcers
arthritis/arthralgia
nervous system symptoms
stomach and/or bowel inflammation


It shows that the inflammation can be one of the most common signs of Behcet, so I hope in your case this is it. Sorry for the long winded response, i just wanted to give you some reassurance with my story.

Take care and best wishes!
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