Fear Of Doctors & Symptom
Posted 15 September 2011 - 02:44 PM
[this part is a rant, move on to the next paragraph for my question] I have a fear of doctors. It's not a phobia, it's more of an extreme dislike for doctors because I've never met any who have helped, really. In the past, I've had doctors laugh at me (even though I was having an allergic reaction to an over the counter drug, I was just told 'so, stop taking it then' with a sly laugh as if I didn't know that's what I had to do already). My family doctor has said to me 'well, we'll have to find a solution for you' when I explained I eat so many vegetables and so much fruit but I still experience chronic constipation ... then she walked out and moved on to the next patient. And I've had a psychiatrist who didn't let me talk at all, but instead lectured me (without ever getting to know me). So it's only three instances, but I have family and friends tell me it's all in my head all the time, but it;s really really not. because otherwise I would be able to at least get distracted and to function properly. Whether it;s celiac or not.. I know my tiredness is not normal.
So since I haven't been to a doctor to get tested, I want to know whether any of you experience this very "distinctive" symptom. About half an hour to an hour after I eat ... ANYTHING it seems, my arms and legs feel weak and I feel like there's poison cursing through them. That is the best way I can describe it.
I haven't been able to try a gluten-free elimination diet because I live in a very unsupportive environment, so totally gluten free is out of the question unless I keep my own dishes and dish sponge in my own room etc.... I am considering this though because I am in so much pain and am so tired all the time.
Sometimes I'm made to feel like I'm lying. my mother tells me this is what life is like and I have to get used to it, but I don't know how she can say that... she doesn't know what Igo through. I have bowel movements once a week if I take natural laxes. My stomach always hurts, my sides hurt (but I've had my kidneys checked, they seem fine). I am just so depressed and I am not willing to live life this tired.....
Posted 15 September 2011 - 06:51 PM
As much as you hate doctors, I would see one so you can get a correct diagnosis. And maybe it would help convince your mom that you aren't making this up. I have no idea where you live, but you can look up a lot of doctors online and get reviews. There are some honest reviews of docs here, too.
If your family isn't supportive (and they sure don't sound like they are), I would try to find out if there is a Celiac support group in your area.
Unfortunately, you are not the only one who has to deal with unsupportive family. I've heard of lots of other people with celiac disease who have a very difficult time communicating with their family. I think it all boils down to ignorance and lack of empathy.
Let us know where you live and hopefully someone can help you. Best of luck.
Posted 16 September 2011 - 10:22 AM
Posted 16 September 2011 - 11:48 AM
does anyone else have any ideas of how to help hellopixies90?
I don't even know what to say but know how hellopixies feels. I have a real problem with doctors myself and only go when I absolutely have to. That's about once every 3 years and I still hate it. I have been insulted, bitched at, you name it yet it turned out I did have celiac and I was the only one who was right. This is all too common today and it has to stop!
The only thing I can think of is do you have another relative you can talk to and get them to help you out? Have them talk to your mother and try to explain how sick you feel and that you need help and support? You also need help finding a decent doctor and that is very difficult, at times. I am 52 and still am not 100% satisfied with the one I have now. If I keep changing them as often as I have in the past, they will think I am a whackadoodle! Is it possible for you to find a mentor to help? Trust me, I know how you feel. Support for a Celiac isn't always forthcoming from family members.
Posted 16 September 2011 - 01:01 PM
With the doctor, you don't have to tell them too much, you don't have to have a big discussion, you can just say: I want to be tested for celiac disease. Look up symptoms if you have to (this has a good, long list: http://glutenfreewor.../symptom-guide/ ). Bring the entire list if you have to.
If they say you don't need it, you can just repeat: I want to have this test done. The only way I'm going to be persuaded I don't have this is to get this test done. I don't want to argue about it, I just want this test done.
That sort of thing. Because you're not looking to persuade any doctor that you have this, you just want the test, right? so their opinion doesn't matter AT ALL. They just need to be willing to ask for the test. You might be more able to do this at an urgent care, potentially, if you say that you don't have a regular doctor (and you don't now, really, it sounds like).
Also, if there are any celiac groups in your area, some of them will do free celiac tests once or twice a year at gluten free faires. At the very least, they might have some ideas for doctors that are more willing to order the tests, or know of any other health practitioner that might be able to.
Normally, I'm not big on needing to test, if you're willing to try the diet, but in the situation you are in, it sounds like you need some help to persuade your family to start taking your issues seriously.
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease
23 years with undiagnosed sulfite sensitivity
25 years with undiagnosed mast cell activation disorder (MCAD)
Daughter: celiac and MCAD positive
Son: gluten intolerant
Father, brother: celiac positive
Posted 17 September 2011 - 04:23 PM
Your post nearly made me cry. (I may still cry yet.) This is my first visit to this forum, and my first post. I'm new to this, so the suggestions I've seen here are helpful for me too (thanks everyone!). If nothing else, I wanted to let you know you're not alone. I will say up front that I do not have a Celiac diagnosis and haven't been tested. I just know that gluten makes me feel like garbage and eliminating it from my diet made a huge difference for me.
I'm curious about your mom telling you that the pain & symptoms you're describing are just a normal part of life. It makes me wonder how long she's felt that way. Even if your mom/family aren't willing to try gluten free themselves, I don't see anything wrong with creating a "gluten free" safe area in the home and keeping your things separate. If you're able to buy your own food, that would help. You might also try getting more involved in meal planning & preparation. Many foods are naturally gluten free.
I know this is tough without support. My friends, family & even my husband had a few eye-rolls when I decided to go gluten free. It's not that they're uncaring, just unaware. I think they saw it as a phase, or a diet that I should be able to just "suspend" for a day to enjoy their special gluten packed meal. I stayed positive, and kept gently reminding them that my food choices did not personally impact them or alter what they could eat - even in front of me. I reassured them that I didn't expect them to change anything for me. My only expectation is that they allow me to be myself and take care of my own needs. If it comes down to it, I'd rather endure a few negative jibes than deal with gluten symptoms. As they've watched me begin to feel better, they've become more supportive and interested in gluten-free. I hope this happens for you with your family too.
I sought help for my symptoms years ago, & had doctors smirk, chuckle and outright laugh, telling me I couldn't possibly have Celiac because I'm overweight. No matter what other symptoms I had, because I don't have the "classic" symptom of weight loss, the test was deemed "unnecessary." I was told to lose weight, exercise more and, yes, to eat more whole grains. Following this advice I got sicker, with symptoms ranging from the feeling of being "poisoned" you described, to confusion & difficulty concentrating. My doctor prescribed me ADD medicine, suggesting it might also help me lose weight & have more energy. A year later, I was even heavier, my asthma was out of control, I had constant infections, digestive problems, and over the top anxiety for no apparent reason.
2 months ago, I saw a story about Celiac & its more uncommon symptoms, including weight gain (who knew?) and a whole host of things that were happening to me. I started researching more about Celiac, gluten free lifestyle, side effects, nutritional needs and just reading others' stories & experiences. I looked for doctors that might be more knowledgeable about diagnosing Celiac (and open to testing a chubby girl rather than just laughing her out of the office). In the end, I really dreaded getting the same dismissive, "Haha, no you're just a fat hypochondriac" treatment.
I decided to just try eliminating gluten to see what happened. That was a little over a month ago. I've lost 17 pounds (not "dieting" - only 1 major lifestyle change at a time, please), and am feeling better than I have in a very long time. Not "Yippie! Let's do cartwheels" better, but steadily improving. So for me, the test and an "official" diagnosis don't matter anymore. Whatever the outcome might have been, I know I won't intentionally consume gluten again. There is no food/product & no person's approval that is worth feeling that badly.
Sorry this is so long. I just wanted to share some of what I went through & how I tried to deal with it. Bottom line is, you're the only one who can take care of you. Do what you need to do to get healthy, and as long as they're not actively interfering, don't worry about naysayers. Your health is more valuable than their approval.
I wish you the best and hope you're able to start feeling better soon.
Posted 18 September 2011 - 11:40 PM
I just want to add that you can find comfort on this site by just having someone to talk to who cares about you and understands.
Like so many celiacs I too don't trust doctors. It took me 12 years of seeing doctor after doctor and getting no relief. Even when I could not walk, had to close my business, could not drive, and was from a wheelchair to a cane, totally bedridden I was told it was all in my head. Well, it was actually in my stomach!
I think that we know our bodies better than any person with MD, Phd, LCSW, behind their name. Trust what your body is telling you. You might not be able to go totally gluten free but you can make the choice to not eat wheat, barely, rye and oats.
However, you should not eliminate gluten from your diet before you get tested for Celiac Disease.
Get tested as soon as you can. It would help you to know your diagnosis. Second, with a diagnosis your family my be more supportive. But if they are not don't let it worry you. Lastly, the disease often causes anemia, Vit. D deficiency, thyroid problems and more. You need to know what deficiencies you have and what if any other autoimmune diseases you have so you can manage those. So you need to ask for a CMP, CPK, CBC, Thyroid Panel, Vit D levels, Iron Panel at a minimum in addition to the Celiac Panel. A gastroenterologist, a good hematologist and/or a endocrinologist can run all of those when Celiac is suspected.
Doctors do have their place in our care. I only go to the doctor for testing to help me manage my thyroid, vit. D levels and thyroid. Other than that they are useless to me. Doctors don't know how to make you well, they know how to write prescriptions. They are not trained about Celiac Disease because their is no Rx to write for it, therefore, they are not getting any training from the pharmaceutical companies about it.
Remember, because they are relatives does not mean they have our best interest at heart. Relatives can do more harm to you, because you trust them and expect that they will care for you. Trust yourself and God. Sweetheart, you can survive this and get better.
The best of luck to you, you are in my thoughts and prayers.
Take care of yourself.
Posted 20 September 2011 - 10:29 AM
Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.
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