Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Anyone Diagnosed With Behcet Disease As Well? Lymphoma
0

10 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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:

1

Share this post


Link to post
Share on other sites

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 Beh

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,570
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined