I don't even know why I'm writing this. Maybe I'm just as crazy as everyone thinks I am.
My son fractured his clavicle in January. He's a kid, they said it would be healed in 6 weeks and that's it, no follow-up required. Return to normal activities (gym, recess, hockey) when he feels ready after that. Well, he's been pain free and fine now for several weeks and has been back to hockey for 2 weeks. Full range of motion in his arm, and no issues to report. I had been pumping him with extra calcium and vitamins & minerals to ''help things along'' to heal as quickly as possible (although his normal diiet is very healthy). Well...........yesterday got a call from the school because he was hit in the school yard at recess and was in serious pain. They told me he thought it was re-fractured. Anyway, to make this shorter, went to the hospital and x-rays show very little callous formation and the bone is nowhere near healed to the point it should be by now. The doctor was surprised to hear he was back to hockey without problems. And the big 'bump' that should be there signifying the calloused bone (which they had originally told me ''not to be scared about, it's normal), never formed. A bone that should be joined and healed by now, isn't anywhere near that.
Wanna know my first thought? Malabsorption of calcium! More proof of celiac! Along with myself, I strongly have been suspecting that he has it too. Of course, I haven't been diagnosed, much less him. I have my GI appointment for my gastroscopy on April 2nd, with my doctor who really doesn't think I can possibly have celiac............ Paranoia on my part, I guess.
Anyway, today I had an appointment with my GP. I haven't seen her in 5 years. Tired of talking about 'vague' symptoms and feeling stupid. But recent shoulder pain and neck pain that a friend pointed out could be heart related, along with a higher blood pressure reading recently, I decided to go. And I also wanted to let her know that I was going to the GI for the colonoscopy and gastroscopy and mention my idea on the 'celiac thing'. When I told her about my general health problems and the new shortness of breath and shaking, and my thoughts on my son's lack of fracture healing also indicating a possible celiac connection, she thought: anxiety. Yep, she said she's not saying I don't have celiac and that we will have answers on that after the biopsy, but that the fact that I am having these excessive thoughts to the point of correlating my son's issue with celiac, isn't good and that she thinks I'm suffering from anxiety. She understands I'm frustrated about the fact that I don't feel well but it's not healthy to be seeing celiac everywhere. And of course my internet searching isn't healthy either. She wanted to put me on Celexa. I said no. She really wants me to consider this. She says if I feel better on it, it will show that I am suffering from anxiety. UuuuGGhh!!
Can't people understand that I don't want my kids to be affected by the same issues I've been dealing with? Why does it seem so strange to look at their health and see common factors? That makes me a paranoid loon? When I mention the possible celiac symptoms throughout my family, going back to my grandmother, why is this dismissed as nothing? They tell me ''any disease can be found if you start looking at everyone''. Really?
What if I never get this diagnosis? What if I'm going to continue to struggle with no answers? That's the anxiety inducing problem, dammit! Feeling like people think you're nuts and a hypochondriac is enough to drive you crazy. If celiac isn't found, I will really think I AM nuts. I'm so upset.
Fire your GP. NOW. Any "doctor" who wants to push pills on you instead of getting to the root of the problem should be stripped of their license to practise IMO.
Anxiety is one of the many symptoms of celiac. When you go to the gastro, tell him you want the FULL celiac panel, and that you want to make sure he takes at least six to eight samples during the endoscopy.
And if all of your tests come back negative, be aware that false negatives are fairly common. Also, you might have non-celiac gluten sensitivity which won't show up on tests, but has the same symptoms.
I suggest that AFTER all testing is done, even if the tests show negative, you give the gluten-free diet at least a three month trial. Your son should try it too. You will need to be careful about cross-contamination. Ditch your wooden spoons, your cast iron, your scratched plastic, scratched teflon, and your strainers. You will need new condiments that no one else is allowed to use. You will need a new toaster.
Go to the newbie 101 thread. Read as much as you can on this forum. Ask lots of questions. We are here to help.
And seriously, tell your GP she's fired. Tell her why. Tell her she needs to update her education so she doesn't mislead others. Tell her that there is so much more known about celiac since she went to school that she is doing her patients a huge disservice by not learning the latest info. (If it were ME, I'd also tell her to go to Hell, but that's just me.)
gluten-free since June, 2011
Can't eat soy, corn, or foods high in salicylates.
Nightshades now seem to bother me too.
BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!
The reason you are concerned for your son is because of the genetic aspect of it??? Seriously I used to print out articles about lymphedema and take them to doctor appts with me when a doctor wouldn't be knowledgeable about it, now with Smartphones I can have handy dandy info ready. I know my PCP might want to role her eyes when I say I saw something on the Today Show...lol...but she is aware of all the symptoms, this isn't like I'm just on the latest 'craze', she knows I do research and this actually does link all these years of randomness to one thing!
Fire your GP. NOW. Any "doctor" who wants to push pills on you instead of getting to the root of the problem should be stripped of their license to practise IMO.
I agree with this completely! I went through this years ago when I had a hysterectomy at 24. I had just quit nursing 2 weeks before it and my hormones were already nuts. I went to dr complaining on hot flashes, dryness, etc. He wanted to put me on depression meds. I told him no, found a new dr and had testing done that proved I was in menopause! My dr now is amazing. In the 2 years I have seen her, she has NEVER pushed meds on me, preferring testing and alternative approaches. I'm sorry you are going through this, but I agree, it's time for a new doctor.
Thanks everyone. I really just needed to vent. My docotor didn't say I was crazy. She's a very nice doctor and I'm not thinking of replacing her. It's next to impossible to get a doctor at all here and I'm very grateful to have her. In her defense, as I said above, she clearly told me that she isn't saying that I don't have celiac. She just figures that The GI is already investigating that so we will have that answer shortly. She does, however, feel that a lot of my symptoms can be explained by anxiety and thinks I am exacerbating that by trying to connect so many dots everywhere. I know she is concerned that I am constantly worrying about myself and my family. Over the years I've often worried that my stomach issues meant cancer. So she's heard that too. I know that I do clearly sound like a hypochondriac. That's why she recommended I take the anti-anxiety meds. If it helps, then obviously anxiety is the issue. I don't agree. I see the anxiety as a result of frustration over my health issues being unresolved, not to mention some of those things can even be symptoms of celiac.
It's hard to sit in front of a doctor, in the moment, and not kinda feel ''she thinks I'm causing this, and thinks I'm nuts''. Even though she never said that. Because truly, I doubt myself as well. Who wouldn't? The truth is I HAVE tried to diagnose myself. But that's because I can never get a real diagnosis. And that is what I don't understand that the doctors don't get. I realize doctors have invested many years in getting their degrees and medical training and to have 'Dr. Google ' diagnosing, must be frustrating as well. But I've learned over the years that nobody will advocate for you or your kids, except yourself. And yesterday's developments with my son was like a big giant arrow pointing to celiac. Maybe the fact that his bone isn't healing is because of something else, but I would really like it if someone would actually act like the possiblity even exists. Not look at me and think ''wow, she's getting carried away, not only diagnosing herself but seeing it in her kids...'' But what real training do I possess to diagnose him except that I'm pretty good on a keyboard and mouse..............?
She did send me for a whole battery of blood tests, and referred me to a dermatologist for my rash and asked that it be biopsied to see what it is (although that decision is up to the derm), and also referred me to a neurologist about the numbness in my hands since she thinks it might be carpal tunnel. So she is trying to get to the bottom of things. I was just a bit taken aback by the mention of an anti-depressant. Made me feel like screaming.
Like I said at the beginning of my original post- I really don't know why I was even writing it. Thanks again for your support. Hopefully I will have answers soon.
Welcome to the 'it's all in your head/you're stressed club so let me give you these pills' club...I was a member when the doctors threw up their hands because they couldn't figure out what was wrong...until that one last doctor suggested running a Celiac panel and to everyone's surprise it came back solidly positive. By that point I had been on anti-depressants for a couple of months (hey, I was willing to try ANYTHING if it would make me feel better) but it did absolutely nothing for me. The only thing that helped was going gluten free; within weeks I felt the anxiety just drain away. In fact that is one of my main symptoms when glutened.
One thing that amazes me is how quickly doctors will prescribe these things. I ended up being on 3 different ones (not at the same time) because two of them made me so sick I couldn't function. They just kept running down the list of what was available -- and acting peevish because I complained when 1 dose of Cymbalta made me sick for 48 hours (dizziness, gagging, vomiting, unable to sleep, etc.) And let's not discuss discontinuation syndrome which was an awful experience (never want to repeat that again...a miserable 8 weeks of tapering off the meds when the docs finally agreed I might not need them!)
I agree with bartfull that even if the testing proves inconclusive you try going gluten free -- not like it will hurt you!
As everyone says and you seem to agree with, starting with meds is a bad idea.
For your son's healing, maybe getting a vitamin pannel done can help show if he's having any deficiencies that could be harming healing. Educate yourself about Celiac's so you can make sure everything is being tested up to spec. But make sure when you talk to the doctors you give them no reason to think that you might be exaggerating. I'm meaning practice in front of the mirror your conversation to be sure you're staying calm and at least seem receptive to their input.
And as people have said, if the tests come back as negative, try a gluten free diet to see if that helps you. It can't hurt to try. And if the doctors keep pushing anti-anxiety meds, then maybe talk therapy would be a good alternative to dealing with it and it might be helpful to dealing with the stress of changing your culinary lifestyle. A psychologist (not psychiatrist) cannot prescribe medications so they wouldn't push them on you. Anxiety disorders are common in people with celiac's and in the general population. I've been tested almost yearly because I've shown symptoms of generalized anxiety disorder, but years of therapy and getting to know my body and what issues it has has reduced the number of times I'm asked about my anxiety levels. But we're all a little different and react to life a bit differently. You just have to listen to yourself to figure it out.
I hope you get the answers you're hoping for and that your son heals quickly; broken collarbones really are the pits.
While I think my PCP might want to roll her eyes at first when I say I saw this on TV and it's Celiac, the fact the only answer I want is to change my diet and see if that helps...well after tests...but I'm not asking for anything extraordinary and given I do have symptoms she is aware of, and surgery etc getting blood tests and endo (which I've have before) aren't above standard of care for my history so I'm hoping she is as relieved as I am...I am really hoping for some RELIEF.
I know in the past i joked about her thinking I was hypochondriac and she said that I had real health issues that gave me reason to be concerned about symptoms that others might not be....so that's a good sign about her response.....
Why not just take your health in your own hands? I did and it is the best decision I ever made. Of course I spent months and months questioning what the problem really was and to trust my doctor. I was put on anxiety medication 10 years ago because I had the same thing happening (which was really Costochondritis) but because my doctor told me I was "too young" to have arthritis that my pain in my chest was anxiety not inflammation. Funny at the time, I had very bad back pain, a swollen knee and plantar fasciitis but still "I was too young for arthritis". I did get diagnosed with arthritis but then it turned into "diet has nothing to do with it". It is frustrating when you are looking for help and no one is helping you! I went to an ND but with the supplements and all - wow, it got expensive. I then went to a Holistic Nutritionist and because he believes diet affects so much it gave me the confidence to just work hard on my diet to figure everything out.
I have to say that figuring all this out caused anxiety in me big time. Probably because I didn't have the confidence and discipline to just go forth and figure it all out. My husband was also very against all of it when I first started out so there was tension big time going on. He is finally getting it seeing the improvement is myself and our sons and probably won't oppose changing our daughters over. And if he does, too bad. No harm in trying, right?
I bring my two boys to an alternative doctor (who is expensive but worth it) and his main advice for me is to follow my instinct and not let anything get in the way of that. I believe gluten is a problem for all my children and I have my two boys off it and come this summer my two girls will be off of it too. They don't seem as affected but there are signs and it will be easier to pull them off it while they are out of school. That is my gut feeling and I am going with it.
When I read all these responses I think ''Thank God! I'm not alone!'. Really, truly, thank you everybody.
This is gonna be long, sorry in advance.
I have NO intention of taking these meds. I think health care professionals have lost sight of how serious these medications are. It's not like you're taking Tylenol. I'm not saying that they're not beneficial and absolutely required for certain people, they must offer life-changing benefits to some.
To even have gotten this far, I really have taken my health into my own hands. I took the biocard test last April and it was negative. I had no idea then that I was IgA deficient. I kept pressing on anyway. Thank goodness the GI knew enough to at least test my total IgA. He asked me ''How do you know all this stuff?''. I am just counting on an official confirmation because without it I don't believe I could force that on my kids. I'm sure under the best of circumstances, even with a diagnosis, it's hard for kids to conform. I won't feel I have anything to stand on at that point. This scares me.
Last year I sent a bunch of links to my sister. She called me freaking out saying ''Oh my God, this is our family!!''. So she went to her doctor and asked to be tested, which she was. Came back negative. But honestly, she lives in a small town in the boonies and I really doubt the doctor's knowledge on this. Ultimately she was diagnosed lactose intolerant and went off all dairy completely. She says that has cleared up all her stomach issues. So how can I argue with that? She insists she doesn't have celiac now. I can't get her to listen about it anymore. She's suffered 6 miscarriages and has 'unexplained infertility'. They've given up having kids.
So this is my family history:
My grandmother was 4' 10''. She also had multiple miscarriages and my mom was her only successful pregnancy. She had digestive issues her whole life and I remember her always eating her 'chocolates' when I was little. Those were the chocolate Ex-Lax. She died of cancer.
My mother is 5'0''. She also has had digestive issues like her mother. Lived on laxatives and bulk fiber medicines. Bloating and gas too. Suffered from anemia throughout her life. We regularly had Heparos vials in the fridge for her anemia. These were prescribed and are heavy iron and vitamin b12 liquid supplements. She used to tell me stories that when she was a little girl she was weak and sickly and that her mother 'saved' her through her vigilant work with food and vitamins. She suffered from terrible migraines for years. She was diagnosed as type 2 diabetic at age 60. Suffers from arthritis ( rheumatoid? not sure). She's had cortisone shots for it. Had numbness and tingling in her hands. Had carpal tunnel surgery on one and said it didn't really help, so she never did the other hand. Has horrible pustular psoriasis on hands and feet. She had a glorious head of hair that has now thinned considerably (might just be aging). But that really surprised her.
My sister has also had the stomach issues. Except she has diarrhea, not constipation. It's a concern when she goes out, thinking about going to the bathroom first or where she'll be. Bloating and gas. And the infertility and miscarriages.
My daughter is 5' 4''. Yep - stomach issues. Not as severe, however. Mottling on tooth enamel.
My eldest son hit puberty at 17. He was sooo tiny as a kid. Always in the lowest percentile (3%) for height and weight. Today he is about 5' 10'' but can't gain weight and only weighs about 135 lbs. A beanpole. Suffers stomach issues too and eats tums like candy. Tooth enamel issues also. Complains of fatigue, but has trouble with insomnia, so don't know.
Both my younger boys are small for their age. Everyone says 'they take after their mom'. Smallest in the grade. One suffers from headaches regularly (I carry advil with me always, for him) and poop issues since he was a baby. I used to call it the 'frothy poo'. He's almost eleven now so I don't exactly get invited in for a look anymore. Often complains of being tired and needing to sleep. He's the one with the broken collarbone.
Me, I'm 5'2''. I was always a tiny kid. Hospitalized at age 10 because of my stomach issues. Was quite constipated and vomiting regularly. Don't know why they admitted me, just remember they took blood tests and results were of concern so I stayed. Did a load of stomach tests (barium and stuff), x-rays and bloods. Was released after 2 weeks and sent home with colace syrup and fiber pills. My mom was told to use these for my stomach aches. So I pretty much have lived my life on laxatives. Now I've developed bouts of diarrhea intermittently. Have always had gas and bloating. Pain in my stomach was, and is, normal to me. You just learn to live with it. Suffer from headaches regularly. Numbness in my hands that wakes me up at night. Easy bruising. Shortness of breath. Fatigue. Joint pain all over. Hubby laughs that I'm breaking down and he's gonna trade me in. He says I complain more about my aches and pains than a 90 year old. A weird rash developed on my shins, wrist and lower back that was diagnosed as psoriasis. Didn't look like psoriasis to me. Comes and goes. Right now it's on my left shin. Not severe though. And now have been found to have low ferritin level. And of course the anxiety symptoms that include shaking.
My mom and grandmother had early menopause. Until last year, I just thought all this was due to pre-menopausal symptoms. I figured it was hormonal.
So, ya, these dots connect to celiac for me. I feel like I'm carrying the entire weight of my family's health on my shoulders.
My son is seeing the orthopedist next week. They may have to put in a plate to join the bone for healing to occur. Maybe this is a positive? It may get the ball rolling to test him for deficiencies. Everyone I've mentioned it to in the last couple of days just rolls their eyes and says '' well, if he had a bone issue or deficiency he'd have bones breaking often. He's never had that happen.'' Maybe....
If you've managed to read this to the end..............your awesome, and thanks!
I find that I get very anxious and paranoid when I am suffering a glutening. It helps me control it a bit better when I tell myself that. I think that you should have told her, why take Celexa when punching her would work so much better? LOL
Doctors can be really annoying. Of course you are anxious when your child is sick.