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Gastroenterology Psychiatrist?


Celiac and Discouraged

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Celiac and Discouraged Newbie

Preparing for a doctor's appointment with a Gastro Psychiatrist this coming week. I am a celiac but doctor's are convinced that there is more going on. Had a time when I quit work and wasn't very active where I started feeing a little better. So started back to work and added more jobs and other responsibilities and have progressively been getting worse.

Can anyone shed some light on their experience with the Psychological connection to Celiac and if anyone has visited with this type of doctor and what your results were? Were you placed on a type of mood enhancer or psychological med that has helped you?

Your input is greatly appreciated as I seem to be digressing in many ways and could really use some support from other Celiacs. Thanks.

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gatita Enthusiast

Dang, I did not know that such an occupation even existed! But welcome, by the way, although I am pretty much a newbie here too. :)

I'd sure like to hear if others have experience good/bad with that type of therapy.... I feel a bit skeptical because it seems "It's in your head," is the most common thing some doctors say. Not ruling it out though, but like you, I'd just like to hear from someone who went through this.

I certainly sympathize with you ((hugs)), my doctor has just more or less given up on my continuing problems after deciding gluten was the cause. And of course many people in this forum tell me that it can take 1-2 years to heal, so I'm working on being patient!

How long has it been since your diagnosis?

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Celiac and Discouraged Newbie

Dang, I did not know that such an occupation even existed! But welcome, by the way, although I am pretty much a newbie here too. :)

I'd sure like to hear if others have experience good/bad with that type of therapy.... I feel a bit skeptical because it seems "It's in your head," is the most common thing some doctors say. Not ruling it out though, but like you, I'd just like to hear from someone who went through this.

I certainly sympathize with you ((hugs)), my doctor has just more or less given up on my continuing problems after deciding gluten was the cause. And of course many people in this forum tell me that it can take 1-2 years to heal, so I'm working on being patient!

How long has it been since your diagnosis?

Yes, well my Gastroenterologists recommended this doctor because she was a Gastroenterologists and then went back to school to become a Gastro Psychiatrist because she is so convinced of the connection of brain and gut and knowing that it doesn't mean it's all "in your head". She truly understands it's NOT and that's why I'm praying that she can help me steer me in a better direction. I was unofficially diagnosed a year ago, but even though my blood tests just recently came back normal it is so evident that I am a celiac. I've been gluten free for almost a year now and just can't seem to get a step forward! I will keep you posted on how it goes and whether it will be beneficial to look into for other celiacs. Thanks for your {{hugs}} - they are much appreciated right now as I need other celiacs to help me get through this really hard place right now. It's amazing to me that doctor's don't know what to do with celiac. I know Jennifer Esposito (Jennifer's Way.org) has a specialist doctor that she sees regularly in NY for her treatment for Sever Celiac. There have got to be more Celiac specialist out there and we just need to find them. I also considering a Nutritionist to help me with my eating because I'm allergic to so much and lately everything I eat makes me feel badly. Here's hoping for relief for us both!!!

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New Community Member Explorer

What I understand regarding the nervous system and the GI system, is that they are interrelated. When one is not working, the other is not working and vice versa. Our guts produce more serotonin (the feel-good hormone) than our brains. (About 80% of the serotonin in our body is in the gut!!) So, naturally, it seems to make sense that when we are not feeling well it affects us mentally/emotionally. For me, I am much happier on days I am feeling best and symptoms are controlled. Are you still experiencing symptoms? If you are, perhaps when you have celiac is under control the psychological aspects will subside.

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Celiac and Discouraged Newbie

Well, my symptoms got better after I detoxed but now they are getting worse and it seems like everything I eat has a negative effect. i am meeting with a specialist and having a colonoscopy this week as i have been having severe pain around my colon and other problems (sparing you the details). I would love to see things get back under control. Some days it is hard to keep pushing myself through my responsibilities. But I am going to keep fighting and hope for some help!

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So sorry to hear :( Yes, I agree. It's worth the fight back to health. I'm still working on my own, but I can't wait to feel better again. Whatever it takes!!! Keep pressing on!!!

Well, my symptoms got better after I detoxed but now they are getting worse and it seems like everything I eat has a negative effect. i am meeting with a specialist and having a colonoscopy this week as i have been having severe pain around my colon and other problems (sparing you the details). I would love to see things get back under control. Some days it is hard to keep pushing myself through my responsibilities. But I am going to keep fighting and hope for some help!

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Madagascar Rookie

we have a local nurse who is a celiac - she left her position as an emergency room doc and started a job educating people about gluten and helping people get through it. she speaks internationally on the topic, so i think she really knows her stuff. i went to her talk last week and have talked to her on the phone. she says that the antibody that a body forms in response to gluten is one of the few things that can cross the blood-brain barrier.

i have a cousin with schizophrenia so talked to her for quite a while about the mental health connection. she said she has seen people improve mentally - dramatically - when they went gluten-free (if they are celiacs.) so i went looking online and found a number of articles on the national institute of health's med library on the connection between mental health and gluten antibodies.

not sure if that helps you, but i hope it lets you know that it's not "just in your head" but might be coming from your small intestine. no idea, but i wonder if it says that you still have gluten coming from somewhere. another thing the nurse told me is that there are quality problems in having labs read tests - enough that she had me send my blood sample to Prometheus labs. The univ of chicago celiac center site recommends the prometheus labs and the mayo clinic. makes me wonder if your labs came back negative, i wonder if it was read by someone who knew what to look for. i hope you get some help from the doc!

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GFinDC Veteran

If you were gluten-free for a year your tests should have come back as normal, ie not celiac. The antibodies drop off when you stop eating gluten.

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GF Lover Rising Star

I have never heard of this type of Doc but I think it's an Excellent idea. I would go if I knew of one in my area.

Not only are gluten issues related to depression but just having a disease can cause depression.

Wishing you well,

Colleen

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  • 5 years later...
emontgomery Newbie

Can anyone recommend any Gastroenterology Psychiatrist?

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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