Newly diagnosed, really anxious...

[Mnoosh]

I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!

[cyclinglady]

Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.  

I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed.

Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!  

I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  

[Gemini]

Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you! 

 

[captaincrab55]

Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.

[squirmingitch]

Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year. 

You've been given great information. Just breathe and then again, breathe. You're going to be fine. 

[Arasmas]

I have never posted on these forums but I have been reading them since my diagnosis 7 months ago and when I saw your question I had to respond.

Mnoosh, I know exactly how you feel.  Prior to diagnosis and for the months following diagnosis my anxiety was through the roof.  I was absolutely obsessing and the fact that I had an increased risk of small bowel cancer because of celiac disease terrified me.  And, I wasn't only worried about my increased risk, but worrying about the fact that I already had cancer.  The fear and anxiety that came with the Celiac diagnosis was paralyzing.  

Two things really helped me.  The first was figuring out that some of my anxiety and depression were symptoms of malabsorption of vitamin and nutrients from the Celiac damage.  Before and shortly after diagnosis, my vitamin and nutrient levels were in the toilet, and these things can mess with your brain just as much as your body.  In addition to a good multi-vitamin you might want to try a magnesium supplement.  A magnesium deficiency can cause symptoms of anxiety, depression and all sorts of other issues.  There is plenty of research on the link between magnesium and anxiety, and the magnesium is good for the gut too, so it certainly won't hurt to try it. 

The second was a statistic.  I like statistics, I find them comforting.  On the WebMD page for small bowel cancer, it is noted that small bowel cancer is very rare.  There are only approximately 7,000 cases per year in the US.  There are approximately 319,000,000 people in the US.  So 7000 cases is .00002% of the population.  Considering it is estimated that between .5%-1% of the population are suffering from celiac disease, often undiagnosed, that's not very many people (with or without Celiac Disease) who actually get small bowel cancer in general.  So while there is an increased risk of getting small bowel cancer because of celiac disease, your chances of getting it in general are really very small.

Oh, and I have noticed that my lymph nodes seem to get a bit swollen after I've accidentally ingested gluten.  I don't remember them being swollen before diagnosis, but I was such a train wreck at that time, I probably wouldn't have noticed.

Sorry, that got longer than I had intended it to, but I hope this helps a little.  The best thing to do right now is take care of yourself.  Eat well, exercise, take your vitamins, sleep and give your body time to heal.   

[Mnoosh]

Thank you all so much for your replies! I'm going to do my best to stay away from the "scary information" out there on Google and just take things one day at a time. Xoxoxo