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Top Five Reasons To Get A New Doctor
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For my complaints of dumping immediately after taking a bite of food, my primary care doctor did two things, gave me zelnorm, which is for constipation and told me that I was depressed, it was my nerves, and that I had IBS. He managed to get me to take paxil with no results, then zoloft which made it so much worse that I could not even eat one bite of food in the am and travel by car to work without having an accident. I had to wait all day long until I got home to eat, to where I could be near a toilet.

He kept trying different antidepressants, all with no results. I refused them after awhile and still he kept trying. Even though he never said it, looking back, I realize now that he thought I was some kind of a nut case. Our twenty year relationship ended when his office sent me a certified letter stating that it was no longer beneficial for him to be my doctor.

The only good thing that he did for me was to send me to a GI doctor who prescribed Cholestyramine which helped enough with the D that I could have enough time after eating to get to the bathroom, in most cases.

By that time I was so worn down and mentally confused due to fatigue and other symptoms that I didn't have the wherewithal to even keep track of doctor's appointments. The GI doctor insisted that I needed a test, which I have no clue to this day what the test was, and I kept dragging myself out of bed and going on the wrong day. I would go a few days in advance or a few days after the scheduled appt. I never got that test.

I then went through a sleeping spell that lasted for over 6 weeks, only rising to use the restroom and eating very little as everything made me sick.

Went to another doctor who told me I had EBV and low thyroid.

By this time, my extended family had drawn the conclusion that I was just lazy and were very unhappy with me because I could not drag myself out of bed to go visit them or do things with them. My brother washed his hands of me at that time.........and still won't speak to me because he wanted to have a big dinner for my birthday and I told him that I was too sick to come.

My new doctor listened to my entire laundry list of complaints, including the fact that my memory has deteriorated so badly that while on the way to his office I could not even remember where I was going at all for a few moments, and to his credit did not try to put me on antidepressants but started running blood tests. They came back as extremely low folate and low thyroid.

I have discussed the likelihood that I have Celiac disease with him but so far as I am aware, he has yet to order any blood tests for that nor has he referred me to a specialist in that field. He did however refer me to an allergist. The results where that out of 64 things tested for including, trees, grasses, molds and foods that I am allergic to all but 7. Beef, pork, chicken, fish, egg whites, garlic and saline are my safe foods.

When the test results came back on all of that he exclaimed with happiness, "See, it's not all in your head after all, you have a real problem". I had never indicated that it was all in my head. I had told the man that I have had chronic D for 12 years now and was suffering from extreme fatigue to where I could sleep around the clock and that my stomach was constantly bloated and felt as if it were on fire with infection at times, which I believed was altering my ability to absorb proper nutrients to the point that I was losing cognitive ability.

On my own I have gone gluten free, but it is particularly difficult when you are allergic to all grasses including rice. I have lived on cabbage soup, roast beef, scrambled eggs, green beans, pineapple and chicken for the last several months. The D is gone for the first time in 12 years.

This guy seems to want to help, but really knows so little, but is not really wanting to refer me to a specialist, as he seems to want to try to figure it out himself. If he will refer me to someone who can help I will keep him for my primary physician but if he won't, I am going to have to go doctor shopping yet again.

My old GP and GI were the best but as I mentioned I moved. Don't hesitate to go to aGI. The Celiac Support Groups in each state can recommend doctors as can the Celiac Sprue group online (I found that out thanks to the help of a wonderful ember of this forum).

Loey smile.gif

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When the office tells you to take "Vitron C for Iron, Vitamin D 20,000 & Vitamin D One-A-Day." After confirming that I will be taking 20,000 for Vit D and will be on three different supplements and am told yes I proceed to going to three specialty vitamin stores and become very confused when I can't find anything above 5,000 IUs and One-A-Day doesn't make a Vitamin D concentrated supplement. After calling the office and speaking with a second person they confirm I should only be on two supplements, tell me the Vit D should be 2,000, and I should only be taking Iron three times a week - WOW that could have turned out bad, you would think they were trying to kill me!

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With as incompetent as most Doctors are. I think they are trying to kill us all. Gotta hand it to them, they are doing a bang up job! :huh:

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This was a great thread. I have to say that at first my dr gave me info from the internet and told me that once I was well I may be able to eat gluten again. I've stayed with her though (we're in sort of a small town anyway) as she not only read everything I gave her she studied the disease on her own. She spends as long as necessary with me and will do any test I ask for. I wish we had access to a specialist but at least I have someone who is willing to listen & learn.

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This was a great thread. I have to say that at first my dr gave me info from the internet and told me that once I was well I may be able to eat gluten again. I've stayed with her though (we're in sort of a small town anyway) as she not only read everything I gave her she studied the disease on her own. She spends as long as necessary with me and will do any test I ask for. I wish we had access to a specialist but at least I have someone who is willing to listen & learn.

You're so lucky that she listens and is wiling to learn. The jury is still out on my GI.

Wishing you a happy and healthy gluten-free Thanksgiving. Just put my Ducks in so we'll be eating late.

Loey

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Go to the doc feeling completely exhausted and achey. Was told, you have three kids, you want some antidepressants? Take some iron your ferritin is 2.

Go to second doc, tell him about ferritin of 2 and he says you have celiac and does the tests. Go back to doc number one, tell him I am celiac and he says, thats a simple test, why didn't you ask me to run it?

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(after years of debilitating symptoms that magically went away after going gluten-free)

Me: I went gluten free and all those symptoms I've had for five years went away, including the daily bouts of excruciating facial pain.

Doc (after a year of near indifference): Facial pain? Let me check your sinuses....... They look fine. Here is a prescription for antibiotics. Come back in three weeks for a physical because you're overdue for one.

***Three weeks later***

Doc: If you still want that celiac test, you can get it today, but your insurance probably won't pay for it (Doc leaves).

Me (to nurse): I've been gluten free for over two months. Would I even pop positive if I had it?

Nurse: That's a good question. Let me check with the lab guy. (Leaves. A flurry of typing is heard from around the corner.)

Nurse: We think so. It's an antibody, and antibodies last for years. Think of smallpox vaccines... Besides, you may think you are gluten free, but gluten free means a lot more than not eating bread. You'd also have to avoid rye, barley, beer, and just about every prepackaged food.

***Three weeks later***

Me (calling on phone): Hi, you said my test results would be in a week ago....

Receptionist: Sorry, let me see if the doc left any notes for you. Hrmm, there is nothing to worry about, your physical looks great, you are perfectly healthy, except that your vitamin D is alarmingly low. Doc recommends you buy the sublingual drops that we sell here...

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My first biopsy result - "You just have some ulcers in your small intestines, take more Protonix and Prilosec". My 2nd biopsy result, after 8 months of unresolved issues, a stomach emptying study, etc all negative - "You just have A LOT of ulcers in your small intestines. Have you been taking your Prilosec?" (they had doubled my dose between biopsy result 1 and 2. Thank god for the GI nurse practitioner that suggested I try gluten-free even though the blood test was negative. I went back to gluten at the doctor's recommendation and got sick again almost immediately, and haven't been back to it since. They still deny that I have Celiac in spite of inconclusive biopsy (due to what they called ulcers but was who knows what in reality) because my blood test was negative. <_<

Seeing a new doctor soon, hopefully they're a bit more understanding or I'll be shopping around for a new doc. Insurance changes suck, I had the best doctor ever that actually would discuss things with you and had an ounce of respect for his patients. Most of them look down on you even more if you're in the medical profession and can understand what lab levels or anything means, heaven forbid (I'm a nurse).

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LOL this is great...once I went to the hospital because the antibiotic they gave me made me ill and the nurse that I told I had Celiac handed me a cracker and said this will help....LOLOLOLOL

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
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