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runnergurl2012

Celiac And Lymphoma

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I was official diagnosised with celiac disease yesterday with blood testing after suffering since I was 8 (I am several years old than that now). My doctor discussed doing a biopsy, but that it is hit or miss if it will produce a positive result, but if I want it done I should do it sooner rather than later. Where he really threw me for a loop was when he mentioned lymphoma. Now I am an ICU RN and I couldn't understand what the heck he was saying, let a lone how he was making this connection. I spoke with a good friend, who is a doctor, and he suggested I see the GI doctor because my doctor is not a specialist. He did say there are certain lymphomas linked to celiac disease. Where I am getting confused is I thought celiac disease can cause any number of autoimmune disease, including lymphoma, if not caught early.

Does anyone have any information on this? I am going to do some more research on the topic, but I just can't understand why my doctor would single out that complication.

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Maybe that's the only complication he knows? Maybe saying "lymphoma", people hear "cancer" and he thinks that will scare you into being gluten-free?

You might use the google in the top right corner. We have had lots of articles about lymphoma podted in the last year or two,

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I agree that it's possible he is trying to impress upon you the seriousness of this disease. Of course the possibility also exists that he's an idiot, although I doubt it since he insist on not waiting on biopsy testing, and not insisting on continuing on eating a diet that is making you sick to do a biopsy that doesn't seem necessary.

There are many auto immune diseases linked with celiac and many types of lymphomas are just the tip of the iceberg. My mother in law just happens to have non-hodkins lymphoma, which happens to be one of those linked. The family has a host of other linked diseases but she's too busy keeping the gun to her head by eating bread to listen to me. She is literally killing herself with bread when she could stay in remission because being gluten free is "too hard" as she explained to me one night.

I didn't need a doctor to scare me, when I saw the links to the diseases myself I was scared out of my mind. I watched my husband's grandmother slip away to dementia. Thankfully she died last spring. I'm watching my MIL kill herself. I won't like, going gluten free is hard as hell and it's a roller coaster ride of emotion as you learn to cope. After 8 months though, I don't miss it. I'm occasionally tempted, but then I wonder to myself what it would be like to have sane moments where I knew what was happening to me as I slowly slipped away to dementia. Or to be dying of cancer and wonder if it were chance, 34 years undiagnosed or that slice of pizza I just had to have that killed me.

More doctors should scare the hell out of their patients with this diagnosis. My husband does demos for an advertising agency and was doing some products that about half were gluten free and half weren't. A former co-worker came up and started talking to him and asked about it, and he knew what was/wasn't since he's gluten free with me (for now) and she mentioned she has celiac then picked up the ones with wheat in them. She was like "you know how it is, you have to cheat every now and then." No. You don't. That could be the chip, or slice of pizza, or donut, or whatever, that literally kills you. Kudos to your doctor for trying to scare you gluten free, although he looses points for failing at talking to you in terms a reasonable person could understand.

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My child's GI mentioned lymphoma before the biopsies were even back. He also mentioned other issues and I sat bawling in the room. I didn't like that bedside manner and changed doctors. The new one told me that yes if she ate gluten for 20 years then it might cause it but just an accidental gluten would not. I was almost paralyzed with fear because I have seen my friends child go through 3 years of chemo for leukemia. They should mention that I'd you don't cooperate that it may lead to that down the road but to say it to a parent within minutes of the scope is not necessary in my opinion. We are already worried enough.

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My child's GI mentioned lymphoma before the biopsies were even back. He also mentioned other issues and I sat bawling in the room. I didn't like that bedside manner and changed doctors. The new one told me that yes if she ate gluten for 20 years then it might cause it but just an accidental gluten would not. I was almost paralyzed with fear because I have seen my friends child go through 3 years of chemo for leukemia. They should mention that I'd you don't cooperate that it may lead to that down the road but to say it to a parent within minutes of the scope is not necessary in my opinion. We are already worried enough.

Once a person follows a gluten-free diet, after 5 years, their risk of developing lymphoma goes back to that of the general population. So don't become paralyzed with fear over this. Many people go many years without a diagnosis of Celiac, as did I, and do not develop cancers from it. I would be more concerned about developing other AI diseases but not worry too much about it. Life is too short to worry about what could, but probably won't, happen. I think it's up to doctors to instill knowledge in people, not fear.

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I'm all for arming people with knowledge. Lets face it, a lot of us have had dealings with doctors who aren't equipped to arm patients with knowledge. On top of that, they send patients home to navigate this tough road and then they see all these moronic celebrities on TV and then don't take their own disease seriously. I suppose I'm scared because I went 34 years sick and undiagnosed so I have a lot to fear. On the other hand, not everyone does. But they do if they follow the "advice" and examples set by celebrities. That is why I am not opposed to instilling fear in people to scare them gluten free. Not paralyzing with fear fear, mobilizing with fear fear. Or maybe I just was impacted differently and instead of being too scared to do anything, I took that fear and armed myself with knowledge and use it to keep myself safe.

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There are several Pub Med articles that discuss the link to lymphoma, especially in people who are diagnosed much later in life. But, as Gemini has mentioned, this risk for lymphoma decreases with every year that a person remains gluten free.

I am guessing your doctor mentioned it more out of concern for you, rather than to scare you. (At least you know he has read some material about celiac disease. Many doctors are clueless.)

Do not worry too much about lymphoma or any other complications right now. Instead, try to focus on the fact that you are starting on a new path that will bring you renewed good health.

To be DXed earlier, rather than later, is a blessing, believe me.

You need good follow-up care now---with a celiac-savvy doctor.

Best wishes to you and welcome to the forum.

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There are several Pub Med articles that discuss the link to lymphoma, especially in people who are diagnosed much later in life. But, as Gemini has mentioned, this risk for lymphoma decreases with every year that a person remains gluten free.

I am guessing your doctor mentioned it more out of concern for you, rather than to scare you. (At least you know he has read some material about celiac disease. Many doctors are clueless.)

Do not worry too much about lymphoma or any other complications right now. Instead, try to focus on the fact that you are starting on a new path that will bring you renewed good health.

To be DXed earlier, rather than later, is a blessing, believe me.

You need good follow-up care now---with a celiac-savvy doctor.

Best wishes to you and welcome to the forum.

This is very good advice...... :)

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I didn't need a doctor to scare me, when I saw the links to the diseases myself I was scared out of my mind. I watched my husband's grandmother slip away to dementia. Thankfully she died last spring. I'm watching my MIL kill herself. I won't like, going gluten free is hard as hell and it's a roller coaster ride of emotion as you learn to cope. After 8 months though, I don't miss it. I'm occasionally tempted, but then I wonder to myself what it would be like to have sane moments where I knew what was happening to me as I slowly slipped away to dementia. Or to be dying of cancer and wonder if it were chance, 34 years undiagnosed or that slice of pizza I just had to have that killed me.

More doctors should scare the hell out of their patients with this diagnosis.

I'm watching my mom go through the dementia now, and she has possible multiple myeloma or lymphoma, doc can't differentiate it yet. I'm pretty certain she is celiac given other signs her body has given, and I even got her on a gluten free program for a few months. Her caregivers did a good job managing that, but now that my brother is back in mom's life he is sabotaging at every turn. He just says "this little bit isn't going to kill her any faster...". I'm wanting to smack him while screaming "yes, it IS!" He is diabetic, and looks at everything through his filter...a little sugar can be overcome with a little extra insulin. ARRRGGHH.

I live too far from them to physically intervene, hopefully I can get her moved close to me in the next month or two.

I so agree with you, doctors SHOULD scare the hell out of people.

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I'm watching my mom go through the dementia now, and she has possible multiple myeloma or lymphoma, doc can't differentiate it yet. I'm pretty certain she is celiac given other signs her body has given, and I even got her on a gluten free program for a few months. Her caregivers did a good job managing that, but now that my brother is back in mom's life he is sabotaging at every turn. He just says "this little bit isn't going to kill her any faster...". I'm wanting to smack him while screaming "yes, it IS!" He is diabetic, and looks at everything through his filter...a little sugar can be overcome with a little extra insulin. ARRRGGHH.

I live too far from them to physically intervene, hopefully I can get her moved close to me in the next month or two.

I so agree with you, doctors SHOULD scare the hell out of people.

I understand what you are going through as my father has dementia and I KNOW it is caused by Celiac that everyone else is in denial he has. He is presenting like I did and looks like he is dying from malnutrition. However, having said that, I don't agree that doctors should be scaring the hell out of people. That's too controlling. I don't like the fact that my father is such a mess but it's his life and if he doesn't want to acknowledge he has a problem, that's his business. It's foolish to think you can badger people into compliance and not a doctors job to do so. If people do not comply, then a doctor can always tell them to find another physician.

I find there is too much control going on in people's lives today. For adults, it's up to every person to do what's best for themselves and not up to a doctor to treat them like a small child who isn't eating their veggies. My father will most likely die from undiagnosed Celiac. It sucks but it's his life and he is free to do as he chooses. He is almost 80 years old and he isn't going to stop eating gluten at this point, no matter what someone says to him. Doctors should stick to educating people and let them make their own decisions. BTW......with all the symptoms my father has, and with a Celiac daughter, not one of his quacky doctors will test him for Celiac. He is just "old", as they say. It's rubbish but I have no control over that.

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He is almost 80 years old and he isn't going to stop eating gluten at this point, no matter what someone says to him.

That's what I thought about my father, of the same age, but he did. I didn't nag him, but he did know I was celiac and eventually he got bothered by his symptoms enough to give it a try. He is very glad he did and feels better than he has in a long time.

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Doctors should not tell the worse case scenerio as if it would automatically happen. Yes lymphoma may be a rare effect but when 1 out of 100 Caucasians supposedly have it and don't know it....lymphoma would be everywhere. My support group leaders dad found out at age 98. We all have to die if something and it may not be celiac related. No need to freak everyone out. My Gyno doctor had never heard that celiac caused infertility until I told her last week yet that was another thing the doctor tried to scare me into it for my daughter. Just wish that they could do it easily.

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That's what I thought about my father, of the same age, but he did. I didn't nag him, but he did know I was celiac and eventually he got bothered by his symptoms enough to give it a try. He is very glad he did and feels better than he has in a long time.

Unfortunately, my father's dementia is so advanced, he does not understand what eating gluten free means. He does not participate in conversation that much anymore, either. He sleeps a lot in his chair from all the gluten he eats. His favorite meal is lobster mac n' cheese and he eats it frequently. If you try to get him to eat something without gluten (you know, healthy) he reverts to his inner 3 year old and becomes belligerent. It's horrible and has happened very fast. His wife and he go out to eat almost every night as it's their only social interaction now and she is not going to change their habits.

They both are in bad shape and I honestly don't think they will live another 3-4 years. It's heartbreaking but I learned a long time ago that there are some people you cannot change. They are hell bent on destruction but these 2 are always at the doctors and take a boatload of meds. They go home and don't do anything they are supposed to. Sad as anything as we have to watch this all happen. I tried to tell his wife twice, very seriously, that he needs to be tested and I get ignored. Done with that!

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Unfortunately, my father's dementia is so advanced, he does not understand what eating gluten free means.

I'm sorry for that. It must be very hard.

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My poor Mom had dementia toward the end. I believe it was because she stopped getting her vitamin B12 shots. Maybe you could talk to your Dad's doctor about B12? If he is deficient (and many celiacs are), it MIGHT help if he started getting shots. If that works and his mind clears up he might decide to go gluten-free?

And if this gets your hopes up and it DOESN'T help, I am sorry. There is nothing, NOTHING worse than dementia in my opinion. I lost my grandmother (who had many celiac symptoms) to it, and then my sweet mother. Having just helped a friend leave this world due to cancer I can honestly say that I would rather go the way my friend went than to go the way my Mom and grandmother went.

If I am out of line here, I ask your forgivness.

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My poor Mom had dementia toward the end. I believe it was because she stopped getting her vitamin B12 shots. Maybe you could talk to your Dad's doctor about B12? If he is deficient (and many celiacs are), it MIGHT help if he started getting shots. If that works and his mind clears up he might decide to go gluten-free?

And if this gets your hopes up and it DOESN'T help, I am sorry. There is nothing, NOTHING worse than dementia in my opinion. I lost my grandmother (who had many celiac symptoms) to it, and then my sweet mother. Having just helped a friend leave this world due to cancer I can honestly say that I would rather go the way my friend went than to go the way my Mom and grandmother went.

If I am out of line here, I ask your forgivness.

In no way are you out of line, bart! It is incredibly frustrating to see this happen to a man who founded and ran a very successful business and retired with wealth many people will never see. He should be traveling the world now and enjoying life to it's fullest yet staggers around the house, malnourished and confused. Yes, he has gluten ataxia, which could be Vit. B deficiency but whatever doctors he goes to are idiots. He is presenting exactly like I did, with just about all the symptoms of full blown Celiac and no one is interested in helping him. His wife is in bad shape herself with COPD so maybe it's just exhaustion on their part and not wanting a serious life change? I can't figure it out. It baffles me. My whole family have symptoms and they think I am one of those nuts who thinks everyone has Celiac. DUH...we share genetics people and I have a double DQ2. That means they have at least one copy from my parents...it's on BOTH sides. That's why my case was so severe. I had to admit defeat and that's not easy for me to do.

He has gone downhill incredibly fast too. I have said to my husband that I think they want him to die faster so all the greedy people can get his money.

At least I tried to help him. The funny thing is, when I go to visit him, I bring gluten-free food with me and he is so confused, he has taken my food to eat.

He likes the gluten-free stuff I bring and he doesn't even know it's gluten-free! I mean really....what the hell is wrong with people that they think they'll die if they have to go gluten-free? I don't blame my father as he too confused to understand right now. I blame the others who blow me off and won't help him. I don't even know who is doctors are because that is a secret they won't share with me. I am told nothing now so I visit him in case he goes off the cliff.

Sometimes I hate my family...... :(

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My poor Mom had dementia toward the end. I believe it was because she stopped getting her vitamin B12 shots. Maybe you could talk to your Dad's doctor about B12? If he is deficient (and many celiacs are), it MIGHT help if he started getting shots. If that works and his mind clears up he might decide to go gluten-free?

And if this gets your hopes up and it DOESN'T help, I am sorry. There is nothing, NOTHING worse than dementia in my opinion. I lost my grandmother (who had many celiac symptoms) to it, and then my sweet mother. Having just helped a friend leave this world due to cancer I can honestly say that I would rather go the way my friend went than to go the way my Mom and grandmother went.

If I am out of line here, I ask your forgivness.

I lost my dad to cancer, and am losing my mom to her complex of dementia/likely celiac/malnutrition. It is so much more painful watching my mom, because she could go another 5 or 6 years this way. Her mom went this way.

It is a VERY long, traumatic good-bye. We do all have to go sometime from something, I always prayed my mom would have a peaceful old age and go in her sleep. She has had so much pain, so many losses in her entire life.

It is not to be, and it hurts. It hurts even more because my brother could be helping her make good choices, and he won't. Mom can't choose for herself, she doesn't know the difference.

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I have discussed this with my GI doctor and he agrees.

Given the devastating effect of malabsorption and what it did to my brain function and central nervous system, I asked him: "Do you think it is reasonable that a large number of people with dementia or mental health issues-- including bipolar and behavioral issues like ADD and OCD-- may just be impaired by gluten toxicity or long unDxed celiac?" and he said "Absolutely, no question".

I know what this did to my brain and it was frightening, maddening, frustrating. Felt like I was tripping my brains out sometimes. Could not think or recall simple information. Had to stop driving my car. Could not balance a checkbook. I had OCD symptoms--made me crazy with it.

I never had those symptoms before in my life! I was never anxious or fearful before either. It was all very strange. I clung to my sanity. If I were not the persistent sort I am, knowing this decline had to have an explanation, I would have ended up in a mental health ward, without question.

Off gluten, resolving the many deficiencies I had (B-12, iron, Folate, D, etc.)-- I am "me" again. Glutened accidentally? Fog bank /gluten head.

Makes me sick to think how many people are suffering from it--and it could be easily resolved.

As far as the original poster's question, lymphoma is mentioned in this article and its association with celiac.

" The association of celiac disease and intestinal lymphoma is well known.7,134 This association was first described in 1937 by Fairley and Mackie.174 Initially it was thought that the enteropathy and malabsorption that occurred was secondary to the lymphoma itself, a concept that persisted for many decades until it became apparent that the celiac disease preceded the lymphoma.134 Later reports suggested that lymphoma involving the GI tract was relatively common and possibly a major cause of death in patients with celiac disease.135⇓–137 Multiple studies now support the association of celiac disease and lymphomas.138-–149 The association between celiac disease and intestinal T-cell non-Hodgkin lymphoma (NHL), called enteropathy-associated T-cell lymphoma (EATL), appears to be particularly strong but these aggressive lymphomas are rare. The current World Health Organization (WHO) classification of lymphomas has recommended the term enteropathy-type T-cell lymphoma (ETL).7"

the full article is here:

http://bloodjournal.hematologylibrary.org/content/109/2/412.full#corresp-1

PLEASE NOTE THIS IS IN UNTREATED CELIAC and the INCIDENCE & RISK factor decreases with dietary compliance.

It does not mean you will develop it.

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