Just Went To Doctors Today...

[HendrixGal]

Hi guys! I just have a bit of a rant because i am getting really frustrated recently!

Ok so i went to my doctor today and at one point i almost wanted to cry. My mom came with me and she was basically trying to make it seem like i was some sort of high strung hypochondriac and that i was making everything up. I really wanted my doctor to understand what i was dealing with but i felt like everything i was saying was being minimized! I have been researching a lot about my symptoms and celiac seems to be what most closely matches them. However, today when i was telling my doctor about them, she was like "Well, you are really stressed because you are going to go to university blah blah blah." While i will admit that i am stressed, i don't think that this is the root of my problem- i think that it is the other way around. I was ready to suggest a blood test for celiac but luckily my doctor at least suggested that much but it was followed with, "But i don't really think that you have that, i don't think that you have any problem, you are just stressed." I was like GREAT! Thanks just do the test alright! Anyways, the reason i think i have celiac is because i have been having these (amazing and very attractive) symptoms for the last three years as far as i can remember:

- Either D or C, never "normal" bowel movements

- Constant joint pain in my left knee, and pretty frequent joint pain in both my knees at night which feels like horrible growing pains (I'm 18 so i dont think that i am actually still growing. Also, joint pain in my elbows, wrists, fingers and neck (the neck pains then lead to headaches).

- Gas especially at night (even my family members have noticed and are always making jokes about it)

- Occasional bloating after eating to where i look, if not nine months pregnant, at least 6 or 7

- Severe anxiety and depression (although sometimes i am more manic depressive than anything where i will be crying or close to tears one minute and then literally skipping and laughing the next)

- Heartburn

- Occasional fainting when i wake up in the morning and stand up

- Recently been getting painful acne which leaves scars even without me picking at it

- Brain fog where i will be talking to someone and i forget what i was saying, i can't remember a specific word, or when i am listening to someone i can't seem to keep up with what they are saying and it gets all jumbled up in my head

- A lot of trouble waking up in the morning because i feel tired (or else too stressed out or depressed to get out of bed)

- A lot of trouble concentrating and focusing on a task (and this has really badly affected my school work this last semester of high school)

- Some days i'll wake up feeling nauseous and then continue to feel that way the rest of the day no matter what i do

- Very irregular periods which i can never keep track of and also very painful cramps (as well as having my period skip a few times)

- Muscle twitching especially at night where my legs and fingers just won't stop twitching, plus, my eye will also twitch visibly and people notice

- I seem to be lactose intolerant because i am really put off my dairy products and whenever i eat something like ice cream or pizza, i tend to have D

- White spots on my teeth and gums that bleed almost whenever i brush them

Some other clues as to why i might have celiac:

- My mom seems to have many of the GI symptoms i have as well as her being low vitamin d (which vitamin d pills don't ), low iron, and low B12 and thyroid problems

- My sister sharing many of my GI symptoms

- My grandmother on my mother's side died of stomach cancer

So despite all of these symptoms, i am really starting to feel that maybe this all is in my head, that maybe i am exaggerating it all. I am worried that if my blood work comes back negative for celiac (which i've heard that there are a lot of false negatives) my mom and my whole family will just put them all down to stress and wont take me seriously. I really don't want to have to deal with these symptoms for the rest of my life and just call them IBS. I don't think that if my blood work comes back negative that my mom will be supportive of me trying to go on a gluten- free diet regardless to see if my symptoms improve. I am really at a loss at what to do because even if it does come back positive my mom isn't really the type of person who believes in such illnesses and will probably be one of those, "Its all in your head, a little piece of bread won't hurt anyways you are being ridiculous!" Everyone here seems to be knowledgeable on these issues and i have no where else to really turn... any suggestions?

[Jestgar]

What you choose to put in your mouth is up to you. Why don't you just try gluten-free and see if it helps?

[ravenwoodglass]

If you are going to college your Mom has no place in that doctors office with you other than to give you a ride. This is coming from a mom who is someone who given the choice would be joined at the hip to her young adults. LOL

Your doctor should have seen you by yourself. If you are over 18 she can't even look at your records or talk to your doctor without your written permission.

Leave her in the waiting room on your next appointment.

All your symptoms do sound like you could be one of us. After you have your all test results and have decided, on your own, whether or not you are going to have a biopsy (if the doctor refers you for one) and that is done give the diet a strict trial for a while.

Do the trial when the testing is over, you don't need to wait for the results.

I am sorry you were made to feel like a 'head case'. Celiac can cause some issues with the brain which could be causing your depression and manic type symptoms so IMHO you should avoid medicating for that until after you have tried the diet strictly for a few months.

I do hope you have a strong positive since that would insure that your doctor advises all your family members to be tested, or it should anyway. But false negatives are all too common. Be sure to ask for a hard copy of your results since even a low positive is positive but sometimes if folks are only a few points into the doctors will report them as negative.

I hope your test results come soon as I have a feeling the diet is going to change your life for the better.

[T.H.]

My Own personal opinion is 'no, it's not all in your head.'

I admit, that's just my opinion. Obviously I don't know you or your case, and I'm not a medical professional. But the fact that you have noticed your reactions with great details does not automatically mean you are a hypochondriac, or that you are stressed out, it means you are paying attention, you're worried, and you don't want to feel this way anymore. I'd say that's pretty normal

Add to this: Women are more likely than men to have their symptoms dismissed or ignored by doctors. ( Open Original Shared Link )

I can tell you honestly that I experienced this first hand, and it was maddening. Although I would add one thing: don't give up. If it's not celiac disease, that STILL doesn't mean it's stress or anxiety. In fact, IMO, if a doctor hasn't tested you for food allergies, thyroid, and other conditions when you come in with the symptoms you did, but says 'it's likely stress,' then you need a new doctor.

For me? I had headaches, vertigo, and earaches for nearly three years. Went to an ear, nose and throat where they tested me and found nothing, and when the tests were done, they looked at me like I was crazy when I 'claimed' to still have pain when their tests showed nothing wrong. As though i should suddenly be cured because they found nothing.

I then was sent to a neurologist, who found nothing wrong, and he told me that meant it was just stress and tension headaches and I was suffering from anxiety.

I finally gave up, because no one could find something, and all I got was more 'you're just a wuss/imagining this.' But when I went gluten free I got very sick, and had to keep a food journal and eliminate a lot of foods from my diet. ANd you know what? the headaches, vertigo, and dizziness went away, but it wasn't from gluten. It was from citrus. It doesn't show up as an allergy, but if I get any citrus (and I've had people put it in my food on accident), I get the earaches, the headaches, and if it's more than once, the vertigo.

It wasn't in my head. That wasn't the only thing where I got the 'it's just stress, you're making a big deal out of nothing' from doctors that I have now found the answer too. But I will tell you that many times I gave up, the problem got worse, and then I found the answer.

My advice would be, trust yourself, and don't give up. And shame on your mom for sabotaging like that.

Also, with your symptoms, let me offer other things you could look at if it's not celiac disease, in the spirit of assuming it's not stress, eh?

1. Fructose malabsorption (this involves more than just fruit, by the way) Open Original Shared Link - this one tends to involve mental as well as physical issues, because the malabsorption affects how you can absorb some chemicals needed for good brain chemistry, as I understand it.

2. H. Pylori infection

3. Giardia or other parasitic infection

4. Small intestinal bacterial overgrowth - Open Original Shared Link

Just a few more things you could check out. Let us know how the test goes!

[Ahorsesoul]

You seem very mature for your age. You have researched your symptoms and have formulated a plan. And you are going to University this year. From now on you should leave dear mom at home for your appointments. You are now an independent woman taking charge of your life.

Celiac testing can be negative even if you are actually positive for Celiac as you know. So it really doesn't matter what the results of the test come back. You know how you feel. If going on a gluten free diet helps you also have your answer.

First start a food and symptom diary. I suggest you copy off the list you made here including the family history information. Next find a doctor who specializes in celiac disease, make an appointment and hand the dr the list and diary. You may have more than one thing going on. Once gluten free you can attack any other problems.

If you read many posts here you will find a lot of people were told the same as you...it's all in your head. Go home, relax. You are smarter than that and I think you will do fine. I am proud of you for taking a stand and not settling for some one telling you it is nothing but stress.

[HendrixGal]

Haha thanks guys! Ya i know i probably shouldn't have let my mom come to the doctors office with me but she wanted to know what the doctor was going to say and i didn't think that she would behave like that! Oh well next time i will go on my own (I am a big girl now haha)!The only thing is is that i know that without a positive result my mom will harass me if i try to stay on a gluten free diet and tell me to stop acting "crazy." But i see what you guys mean i should just do what i have to do regardless. Also, i am really glad that i found this forum because its nice to know that i am not the only one that feels this way and to find sooo many helpful people (a lot more helpful than the doctors seem to be haha)! So thanks again!

[Mari]

Remember that the only person you have to really convince is yourself - not your mom or siblings - tho their support will be helpful. That may not happen until you have some obvious improvent in your health problems. So going as gluten free as you can is a good suggestion and when you notice a difference share that with your family. For you - you need to see a Dr. who will order a Celiac Panel which tests for anti giadin antibodies and tissue transglutaminase - the one I had also included tests for allergies common in celiacs. I don't recommend the panel from Prometheus Labs as it leads to much confusion so ask the DR. which lab they use. If at all possible ask your parents to order the genetic marker test from one of the online labs - I used Enterolab.com. You may not have stopped growing yet, at 20 I was 5' 4'' and by 25 I was 5' 5 1/2 and about 15 lbs heavier.

I have found that thinking a short phrase or mantra to reaffirm your commintment to improving your health to be very helpful. Mine was 'I will go forward with courage'. Yours could be something such as 'I Will get better', something short which you can think to yourself while you are going through the healing process. What you are doing is wonderful and courageous and whatever the causes of your problems you will get better.