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poeticjul25

Yet Another Winning Doctor..

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Hi everyone,

It's me again.. how are you all doing? I just came back from my visit with my primary care doctor, because that is what the specialist in celiac disease in Boston told me to do, and yeah, he was a lot of help...not really. He said to me: "Are you sure you're not depressed?" This is the second time I have heard that at that doctor's office, and it's like no, I am not depressed..just pissed off and frustrated that nothing can be done for my celiac disease symptoms, such as the joint pain, nausea, stomach problems, bloating, fatigue and itching. He ordered a battery of blood tests, and since I did not know I was going to have blood drawn today, I was not prepared, fluid-wise. Needless to say, my arm is in a lot of pain right now, and the nurse did not get the blood..I almost fainted then and got nauseous. Anyway, it just goes to show you that primary care doctors do not know a thing about celiac disease or what to do--you come to them asking for help--about where to go from a certain point, and all they can do is throw up their hands and say "I don't know" or suggest an emotional psychological problem. Yeah, ok--I didn't just imagine that I lost 20 lbs. in a month, and all these other symptoms. The first thing I did when I came home was just cry and yell out of sheer frustration--this bouncing around from doctor to doctor and the patronizing attitudes of: "it's ok, dear.. you're probably just stressed" is really getting to me. I'd like to go to a good doctor for once who can actually help me--this is absolutely ridiculous. I heard about the drug Altovis, or something along that line, for the lack of energy experienced--have any of you heard of it, or have had experiences with energy depletion and fatigue? I just had to vent--I'm not a happy patient right now, and these "all knowing" doctors can just shut their mouths, because if I hear one more time that I am depressed, I am going to scream! :angry: Have any of you been given that line before when you've been trying to tell primary care doctors your problems? It's almost as if I shouldn't have bothered with him--I had a feeling that he wouldn't be able to help me. Anyway, I hope all of you are feeling well, and I am sorry about this rant--I just had to get it off my chest..take care! :-)

--Julie in Ma.

I am right there with ya'!! Now I need to vent...

I saw my 5th neurologist on Wednesday at UCSF, supposedly in the top 5 for neuro in the country, and I was basically told or it was inferred about me having depression. My husband and I strongly feel I am not depressed, TICKED off but not depressed. Well, I guess we are all a little depressed but not to the point that are bodies are causing these symptoms!!!! I am reluctantly on Cymbalta really just to shut my doc's up. On and off antidepressants I am the same. AND I in the past few years (when I think this all started) I tried several different antidepressants with no change, so I do not believe they will be of any help for me.

Neuro doc #5 would not say my neuro symptoms are related to celiac disease, but since other symptoms (I used to sleep kid you not 20+ hours for ~ 6 months. I went on Weight watchers and unknowing of celiac disease diagnosis cut out almost all gluten (carb/starch foods) I now nap maybe 1-2x a month) have improved since being gluten free he said I'll be better. I asked how and he just said he knows I will and on the days I feel are better days think about what I did, didn't do...(leading to depression diagnosis without saying it). I reminded him that I was stressed in my job but that went on for amost a year and it was actually getting better; that I was having fun at a work party the night before I woke up walking like a drunk or like some medical condition that causes you to out of no where kick or throw your arms b/c you think you are going to fall, or lose your legs from under you and not get out of bed or ALL of the above and then some! All he did was nod his head and repeat that I will get better and "...keep up the gluten-free diet since some things have improved." No ---- Sherlock!! :blink: I have celiac disease and have been gluten-free and have to be gluten-free for life!!

I am an RN and I am thoroughly disgusted with the medical field since all this strted in 2005. I really do not feel I can go back to nursing with the bitterness I feel right now and have been feeling with all the different doc's I have seen. Most of them say that neuro symptoms have nothing to do with celiac disease. :angry: That it is only the very rare patient that has neuro stuff. Only one said celiac disease could cause them but after I was gluten-free for a month with no improvement on neuro stuff he went to depression!!!!!!!!!! I was not a very big starch/carb eater to begin with so going gluten-free has been pretty easy, except for the 2 cheesy garlic bread dreams I had in the beginning. I am most bummed about not being able to drive, so that is depressing BUT it also drives me crazy b/c I like to do what I want when I want and for however long I want. I also have unbelievable support from my husband. He has done everything for our kids and me, plus work full time! I seriously feel if the shoe was on the other foot he would be up a creek b/c I do not cook and I have very little patience, plus he would probably be non-compliant and be sick all the time. (hope he doesn't read this, hee,hee,hee). So I do not know what I could possibly be depressed about, which is why I get so irritated when the doc's fall back on it as a fail safe (or what ever that saying is)!

My symptoms are 24/7: tired/fatigue, poor concentration, poor short term memory, I search for words, I mess sayings up, I lose my train of thought in miliseconds, numbness/tingling to all extremities, walk like a drunk , terrible headaches a few times a week and I know I forgot a few.

My diagnosis per doc's: Balance disorder of unknown etiology.

Treatment per doc's: PT and whopping bills!

My diagnosis: celiac disease

My treatment: Strict gluten-free living and just wait it out I have decided. Pray that maybe the 2 year mark will bring the old me back...

Thanks all for letting me vent!

Take care,

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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I do think women get treated differently---even when we have abnormal blood chemistry and scans! It's always our kids, our jobs, our periods blah blah blah. I think you shouldn't tell a dr anything about your personal life. Don't tell him anything and let him figure out what is wrong with you based on all these "tests" they order. All the drs I saw, male and female, would look at the outrageously abnormal tests and then look at me and say.\, "oh, it's because you have kids." What?

Brian, I'm so glad you got effective and speedy treatment. However, I would bet dollars to doughnuts a woman would have been told it was her body lotion.(even if she denied using it) Then when she worked up the nerve to come back two months later she would have been told it's how her body deals with stress. And so on and so on....

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I think the biggest thing is getting out the word to doctors that the gluten-free diet does NOT have to be "nearly impossible" to follow. I know doctors are often concerned about patient non-compliance on treatment, and so they may figure the rate of non-compliance will be so high, and even trying will make the patient so miserable, that it's not even worth suggesting. If they realized, as a group, that it's challenging, but very doable, they might be less hesitant to suggest it.

I have run into those doctors and they drive me nuts!

I have two kids and the youngest is sick and has been for the last year or more (she is only two!). When we moved I started to go to new Pediatricians and I woudl tell all of them about the Celiacs, because I really think the baby has a problem with Gluten. (We recently found that dairy is a major problem for her, but she is still sick all the time so who knows.)

Anyway, so many doctors look at me shocked that I have Celiacs. They ask repeatedly "Who has Celiacs?" I do. "And you stay on the diet?" Yeeessss. "How do you know you have Celiacs?" from the biopsy, and after losing tons of weight and a gallbladder the dr finally got it right.

One doctor (a pediatrician!) caught me off guard when he said "Children under three CANNOT get Celiacs! So it is not an issue for her." I actually laughed at him he caught me so off guard. Then I set him straight and gave him a lesson on Celiacs.

Her current pediatrician is great. Most of my doctors that I go back and see repeatedly, I think kind of like having a Celiac as a patient. It is like a treat of something different and maybe it is something they read about in their medical classes but thought they would never see. They get to see how the disease affects my life (and medications they prescribe) and the life of my kids - we are happy and pretty healthy - expect for the baby. We are still working on her health. Believe it or not, her current Pediatric Gastro is good at what he does, but we have an argument everytime over the differences between allergies and intolerances. He is clueless about allergies and arogant that I question him. He made the mistake of questioning my label reading skills... ha that was a fun conversation. He got put in his place and now respects me when I say the child is having a reaction and did not consume any dariy or casein products.

After years I have learned that even the highest recommendations of a doctor being the best in his field etc doesn't mean anything when it comes to Celiacs.

Sorry about the long vent :unsure:

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