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Just Lucky Or Are The Doctors Coming Around?


OptimisticMom42

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OptimisticMom42 Apprentice

Good Morning All,

I'm wondering if anyone else has had an experience like the one I had this morning. I took my 18yr old son into our local Dr.'s office to request a letter stating that DS needs to maintain a gluten free diet. I took two books and a ziplock container of old pill bottles to prove our case. The P.A. said, "No need, The Dr. already suspected celiacs on your last appointment. I'll have the letter ready for you in about 72 hours." No fuss, no need for further testing.

My own diagnosis was just as seemless even though I had a different Dr. He asked why I thought I might have it. I explained, he confirmed. No fuss, no further testing.

Is this getting easier or am I missing something?

After reading "Too Good to be True? Nutrients Quiet the Unquiet Brain" by David Moyer, LCSW, I was really worried. If you haven't read it, the author's son and father were both bi-polar and suspected celiacs. Each time that either of them were institutionalized they would be taken off their medicine and gluten free diet. My son is bi-polar and gluten gives him "D". He has been hospitalized once and jailed twice (once for being violent during a manic episode, once for driving home after drinking at a senior party). All three times he was fed a high gluten diet and was very sick. So I spoke with his lawyer, a correctional officer and now our G.P.'s office and all have said that a letter stating that a gluten free diet must be maintained to prevent chronic "D" is all that we needed to get DS (still dear to me dispite his illness) a special diet tray if he should be institutionalized again. There are a lot of successful bi-polar people in this world and I hope that my son will be one of those but should his life be a struggle I intend to protect him to the best of my ability.

If any of you have a been through this and have cautionary tales you think I need to hear please post them. Thank you

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freeda Newbie
Good Morning All,

I'm wondering if anyone else has had an experience like the one I had this morning. I took my 18yr old son into our local Dr.'s office to request a letter stating that DS needs to maintain a gluten free diet. I took two books and a ziplock container of old pill bottles to prove our case. The P.A. said, "No need, The Dr. already suspected celiacs on your last appointment. I'll have the letter ready for you in about 72 hours." No fuss, no need for further testing.

My own diagnosis was just as seemless even though I had a different Dr. He asked why I thought I might have it. I explained, he confirmed. No fuss, no further testing.

Is this getting easier or am I missing something?

My doc is also an agreeable sort. He'll give me any tests, any medicines I think will be productive as long as there's no reason not to. He trusts me and my ability to research and decide what direction I want my care to take. I love him. Fortunately, I also have good insurance.

However, sometimes I wish that it wasn't so self-directed. It often feels like I'm the one doing all the work and he's the one getting all the money! But I'll take the deal I've got.... it's not like I can write my own lab orders.

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Rondar2001 Apprentice

I think doctors are starting to improve. We have one of the city's top pediatricians for my daughter and he admitted to us when she was being tested, that even 2 years before that he never would have thought to test her for Celiac. At her last appointment I mentioned that my tip off that she has been glutened is her sleep walking, he replied that he found it facinating and because he knows us so well, he knew that this was a true response. He also mentioned that most other doctors would have brushed this off as our imagination as it isn't a typical reaction.

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OptimisticMom42 Apprentice

Thank you Freeda and Rondar for responding. I'm glad to hear that the word is getting out and that dr's are responding positively. It gives me hope that my son's illness will be recognised and treated appropriately should he ever be placed in a hospital or correctional setting again. No one should have to be mentally ill and have the runs!

I worked as a guard for several years in an institution that housed over 500 inmates. I don't recall even one being on a gluten free diet. Statistically there should have been 4 or 5 at all times. The inmates who did receive special diets were given milk, bread, lunch meat and condiments before bed for acid reflux.

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  • 2 weeks later...
TotalKnowledge Apprentice

I think you are just lucky. After asking my doctor about testing, and opting to try gluten free, he seems completely unimpressed with my improved condition and told me I should still get tested to "make sure" since a gluten free diet is more expensive and hard to follow.

<_<

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Serversymptoms Contributor

Well I haven't met one doctor like such in my city, which has one of the worst health care systems in my opinion. They are doing little about my symptoms, and completely over look everything and are only looking at anxiety and depression. I went from a counsler, to phycologist, and not I'm being referred to a physiatrist... I confirm that I do have candida, and think I also may have a thyroid problem along with other issues due to my intestine being damage, like malnutrition. It's all horrible since I expected this to be taken care of by now, though I do have some relief knowing that for college and future after I plan to reside elsewhere.

Also self diagnosed as celiac

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mushroom Proficient

There is a distinct subset of doctors (mostly male) who believe that 99% of the problems which bring a woman to a doctor's office are in her head. I even had a female physician who belonged to this group. You can't do anything with them, just avoid them.

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beanpot Apprentice

I so hope the doctors are coming around! I'm not sure if my doctor has improved because I'm avoiding my yearly check-up. I went gluten free in March and I'm dreading being looked at with amusement when I tell him. I live in Boston which is supposedly the center for medical resources and progress, and yet about celiac I have always encountered paternalistic attitudes. I have it in my family, have symptoms and still in the past they always resisted the idea. I insisted on the blood test years ago, but it was negative, I never actually tried the diet until this year. I have made my own mind up now, based on my response to the diet.

Best of luck to you with your son, that sounds heartbreakingly difficult. I have 2 teenage sons myself.

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      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.
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      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. 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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. 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    • 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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