• Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Fear Of Doctors & Symptom

Rate this topic

8 posts in this topic

Recommended Posts

hey guys,

[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.....

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Oh, man, I'm so sorry to hear about all the troubles you are going through. It's bad enough to be sick and have to be on a very difficult diet, but even worse when family is not supportive, bordering on being hostile. How old are you? If you are old enough, you should GET OUT of your parents house and live somewhere that is safer. If your mom is so unsupportive and acting like you are lying, she needs some major evaluation. It is NOT in your head. What you are experiencing is REAL. I've also seen a couple of doctors who said that I had "paranoia" and that it was all psychological. BS. Although, when you constantly feel miserable of course it affects you psychologically, too.

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.

Share this post

Link to post
Share on other sites

does anyone else have any ideas of how to help hellopixies90?

Share this post

Link to post
Share on other sites

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, b%$@#ed 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.

Share this post

Link to post
Share on other sites

I know you don't trust doctors, but perhaps going to one to get the test would help you deal with the issue with your mother? Just an allergist, I would think, because your symptoms can go along with gluten issues or other foods that one has mild allergies to. That's close to what it feels like when I eat one of my allergens, the heavy limb thing. My daughter gets that from gluten, though.

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://glutenfreeworks.com/gluten-disorders/celiac-disease/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.

Share this post

Link to post
Share on other sites
Ads by Google:


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.


Share this post

Link to post
Share on other sites


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.

  • Upvote 1

Share this post

Link to post
Share on other sites

Ads by Google:

As adults I think because we have had to deal with aches and pains we sometimes feel like our children should too sometimes but might not be aware to what degree something is bothering one of our children. My suggestion is to try and be sincere with your mom, let her know how you are feeling and ask her if she can make an appt for you. I also do not care for docs and have tried to go to them as little as possible in my life but sometimes that is not good as something like this gets put on the back burner and eventually it can do great damage, unfortunately that is why I am here. I wish you the best!

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Thanks for all the input guys. Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water. For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since. So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting. The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?
    • At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.
    • 6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. Always have to have hot fluids or this happens also.....no more cold drinks lol.

      EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

      Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

      Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.
    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
    • Celiac disease is a chronic digestive disorder in which gluten damages the small intestine. ... next to the dishes that are gluten-free, but how many Americans actually suffer from celiac disease, wheat allergy or gluten insensitivity? View the full article
  • Upcoming Events