Looking for remote counselling/support

[Jwcconnell]

I am looking for advice on counselling or psychiatric care for depression and anxiety linked to my recovery or lack thereof.

Background/Rant:

I am 37 years old, male, 8 months on strict gfd with few processed foods, 7 months after marsh stage 3b biopsy and formal diagnosis. I had lifelong gut problems, persistent low iron and was diagnosed as ADHD at an early age and as an adult needed to eat 4000+ calories a day to maintain my body weight. I grew up skinny but strong and just accepted the gut problems and excessive need for sleep as normal for me. The last ten years were a long slow decline with broken bones taking ages to mend and energy slowly getting worse. Rock bottom arrived 12 months ago with gut infections, abdominal pain, deep depression, hunger, weight loss and bloody stool. I had problems driving and began making dangerous mistakes at work. I was still physically capable of working, but became clumsy and careless and paid for any sustained or intense effort with days of exhaustion. Scope and biopsies confirmed coeliac but ruled out damage to the large intestine and colon. I have been supplementing iron for years and minerals and vitamins for 6 months. Recent bloods show hematocrit is back over 50, ferritin is up to 80, minerals were low but ok, and IGA was still bad, but moving in the right direction. Since starting the GFD I have had decent runs of 2-3 weeks where I hope I have turned the corner, but I also have periods of 2-10 days were every morning feels like the worst hangover of my life and I feel like half a person. Diarrhoea never fully went away, but my gastro doctor says all of this may be normal given how long I left it before seeking help.

After years of taking life day by day I have gotten into a routine of just trying to get through the day, staggering on until the next moment I can rest. I am brutally disappointed that little has changed with the diagnosis and regime. My longtime partner has been supportive through all this but is deeply frustrated by my continued failure to switch back on to life in a meaningful way. While my situation is stable and hopefully soon to improve, I  can't imagine looking forward to work, travel, socialising, etc. Friends and family who see me during good periods remark that I look better than I have in years. I am physically stronger, but I still seem to pay for any overexertion with days of sickness and weakness. This gap between how I feel and how I am perceived stresses me out, as if everything should be fine now but I remain mostly useless. I think it would be helpful to talk to someone about my anxiety, depression, and path back to function. After years of being told that everything was in my head and that I needed to take medication for depression, I am highly paranoid about seeing a shrink who will tell me that it is all in my head. I am seeking advice and/or recommendations for a counsellor/psychiatrist who does remote consultations (I live in a non-english speaking country and feel that I lack the fluency required to get help in the local language.) I would strongly prefer someone who is familiar with the problems associated with coeliac disease. I could do Skype/phone consultation or possibly travel to the UK or Ireland for a first consultation.

Thanks in advance for suggestions/advice.

-J

[kareng]

2 hours ago, Jwcconnell said:

I am looking for advice on counselling or psychiatric care for depression and anxiety linked to my recovery or lack thereof.

Background/Rant:

I am 37 years old, male, 8 months on strict gfd with few processed foods, 7 months after marsh stage 3b biopsy and formal diagnosis. I had lifelong gut problems, persistent low iron and was diagnosed as ADHD at an early age and as an adult needed to eat 4000+ calories a day to maintain my body weight. I grew up skinny but strong and just accepted the gut problems and excessive need for sleep as normal for me. The last ten years were a long slow decline with broken bones taking ages to mend and energy slowly getting worse. Rock bottom arrived 12 months ago with gut infections, abdominal pain, deep depression, hunger, weight loss and bloody stool. I had problems driving and began making dangerous mistakes at work. I was still physically capable of working, but became clumsy and careless and paid for any sustained or intense effort with days of exhaustion. Scope and biopsies confirmed coeliac but ruled out damage to the large intestine and colon. I have been supplementing iron for years and minerals and vitamins for 6 months. Recent bloods show hematocrit is back over 50, ferritin is up to 80, minerals were low but ok, and IGA was still bad, but moving in the right direction. Since starting the GFD I have had decent runs of 2-3 weeks where I hope I have turned the corner, but I also have periods of 2-10 days were every morning feels like the worst hangover of my life and I feel like half a person. Diarrhoea never fully went away, but my gastro doctor says all of this may be normal given how long I left it before seeking help.

After years of taking life day by day I have gotten into a routine of just trying to get through the day, staggering on until the next moment I can rest. I am brutally disappointed that little has changed with the diagnosis and regime. My longtime partner has been supportive through all this but is deeply frustrated by my continued failure to switch back on to life in a meaningful way. While my situation is stable and hopefully soon to improve, I  can't imagine looking forward to work, travel, socialising, etc. Friends and family who see me during good periods remark that I look better than I have in years. I am physically stronger, but I still seem to pay for any overexertion with days of sickness and weakness. This gap between how I feel and how I am perceived stresses me out, as if everything should be fine now but I remain mostly useless. I think it would be helpful to talk to someone about my anxiety, depression, and path back to function. After years of being told that everything was in my head and that I needed to take medication for depression, I am highly paranoid about seeing a shrink who will tell me that it is all in my head. I am seeking advice and/or recommendations for a counsellor/psychiatrist who does remote consultations (I live in a non-english speaking country and feel that I lack the fluency required to get help in the local language.) I would strongly prefer someone who is familiar with the problems associated with coeliac disease. I could do Skype/phone consultation or possibly travel to the UK or Ireland for a first consultation.

Thanks in advance for suggestions/advice.

-J

Maybe just look for a counselor or psychiatrist who specializes in chronic illness?  Maybe check with your local hospitals?  

Have you looked on line?  There are service where you can Skype with doctors , like “Doctors on Demand”.  I doubt they can prescribe you medication in your country but it is a US based group.  There are probably some in Europe- I know my son had a school project to work with an Italian group of oncology doctors to provide remote consults.

[GFinDC]

Hi,

Welcome to the forum!

This forum is a pretty good place to get help with celiac disease.  You are still pretty early on in the gluten-free diet at 8 months.  It sounds like you are starting to get improvements in your health though and that means you are making some progress.  Recovery from celiac damage can take a year or more.  It does take some patience.

Sometimes people find out they have developed additional food reactions that are not the usual wheat, rye and barley.  A dairy (lactose) intolerance is very common in new celiacs.  That often goes away after several months though.  Some of us also react to oats and that is usually permanent.

I react to soy, nightshades, dairy, carrots, and celery.  So you can develop a reaction to any food.  If you have one of these other food reactions they can make you sick until you remove the food from your diet.  An elimination diet is a good way to find that out.

[DanaChambers]

Have you sorted it?

[Jwcconnell]

Thanks for the good suggestions, but I was really hoping someone could give me the name of a practitioner or practice that had helped them out in a similar situation. After 30 years of going to doctors for a host of seemingly unrelated problems and getting (in hindsight) completely useless advice I want to find someone who already knows something about Coeliac, depression and recovery.

 

As far as elimination diets go, the gastroenterologist discouraged it. I am currently eating flat out to hold my body weight despite minimal activity, and he was of the opinion that further restricting my intake would not be useful. I tried 3 months without lactose but started consuming it again when I noticed no improvement. I have cut out red beans, onions, tomatoes and apples as all of these seemed to lead to stomach cramps, but I hesitate to launch into a full on elimination diet.

[cyclinglady]

It sounds like you have improved significantly and are on the right track.  Anxiety and depression are common issues with celiac disease, so you are not alone!  

Please give yourself more time.  It took me over a year to finally feel well.  I felt better when I went grain free when I was diagnosed with diabetes after a year into my celiac disease diagnosis.  When my antibodies are up (and not just just the gliadin antibodies as I have a few more autoimmune issues), Anxiety can happen and depression can set in.  I refuse to take any medications, because frankly I am allergic to so many!   So, I use exercise ( walking is a start) and social outlets to overcome my depression.  Even just sitting outside helps.  I volunteer and that helps because I am doing something for others and not focusing on me.  I play in an orchestra where I can socialize and food never enters the picture.  I also meet with friends to walk.  My friends love it.  

Last year, I had a tooth infection, got the flu, a cold, developed chronic hives (which lasted for six months), and glutened all within a month (based on antibodies testing and symptoms).  I was a physical wreak.  I was so down because I was doing everything right when it came to the diet.  I had been gluten free for four years, but I had been preparing food for my hubby for 16 years.  I did not eat out.  Why was I sick? 

My GI offered another endoscopy, but I resisted.  Finally, I had it done 11 months later.    I had healed from celiac disease but was diagnosed with Chronic Autoimmune Gastritis.  My theory is that my tooth infection and the flu triggered my immune system.  It was so hyper!  Of course the only AI I can control is my celiac disease with the gluten free diet.  It took time, but eventually everything calmed down.  I am back to normal now. 

Dealing with autoimmune issues  has taught me patience.  Give yourself more time.  If you can not find a group that is specific to celiac disease, get into any group.  Just talking it out helps!  It is one of the many reasons  I participate on this forum!