Frustrated

[shadowicewolf]

Why is it everything here lately seems to be against me?

First off, my family. At first they were all aboard, looking researching, etc. But once they learned of the possibility that it might not be Celiacs, their attitude did a 180. Now its "well the doctor said" (the doctor said NOTHING, he has no idea what is going on (or so he says)), and "you just need to tred the waters a bit" (in reference to gluten). I flat out told them no.

I mean how could it not be?

I've had D since i was 12. I used to have to take a pepto bismol just to be able to go somewhere. There were times when that didn't work as well. I used to get sooo sick after eating anything gluteny from a resturant/fast food place (bloating, D, etc) or even from home sometimes.I used to CRAVE it on a daily basis (no joke). My skin was absolutely terrible. I have some sort of condition they have no idea what it is (at one point they thought it was achne, but all treatments for that did not work). From the time i was 12 till just recently i would have to go to the bathroom every 30mins or so or i'd have an accident. No idea what that would be caused by (stress they said ).Indigestion. Knee pain from heck. Massive weight gain. Throat damage from acid.

I could go on, but i think you get the idea.

Now right before i was DX'd my D became uncontrolable, daily event (which was really hard as i was living on campus at my school at the time). I would vomit on occasion (i was never one to do this unless i had the flu). My skin would start burning, nothing would help it. My insomnia reached a peak. Indigestion would get so bad that i could not breath.

All the while the doctors thought it was either the flu, a virus (to which i was told to suck it up), athsma, and panic attacks.

It only started getting bad after i got the flu really bad (and had an allergic reaction to an antibiotic a week later).

But yet, after going gluten free:

My D stopped completely (i've had maybe 4 instances in the last 5 months?). My skin stopped burning. My anxiety went down some. I've lost a lot of weight (~40lbs). My knees don't hurt as bad anymore (only when a storm comes in). My skin is clearing up (!!!!), i no longer get those cycst things i used to get.

But, yet, they don't believe me. I was positive on the blood test, had both genes on the genetic test, yet was negative on the biopsy (GI doctor swears up and down he did my whole intestonal tract, i call bs), and i have done sooo well on the gluten free diet i have no desire to go back to that crap. I did try it again when i was still being tested, the first time was okay, body screamed at the second and third time.

And apperently its my fault that they can't eat the way they used to anymore with buttery sauces and all that crap. I told them if they want it they can have it, but no they would feel guilty, and thus choose to remind me of it. :anger:

I told them i would cook my own meals, but nooooo i can't do that.

They get on my case of eating. "Well there is no way you are eating enough for a proper diet"... Sorry, but i eat better than you do (i said this as well).

They keep trying to get me too eat foods i know will come back up on me: eggs, nuts (except peanut butter), beans and lentils. I have textural issues with those foods, i cannot handle them (yes i have tried many a time...).

How i'm not getting enough dairy (i drank a glass of milk yesterday, it irritated my throat so bad ).

I finally figured out what was wrong with my bread, i didn't even realize that i couldn't share a breadmaker (my fault). Now i know if i bring it up i'll get my head bit off ("Well why can't you? blah blah blah"). And yes, the breadmaker has a major scratch in the container and grandma doesn't clean it that well. And no i can't bake in the bread for heaven forbid i turn the oven on when its hot outside.

I've been wanting to get my own strainer (and other things) for quiet some time. Nope not allowed.At least i have a toaster

I eat things plain jane (maybe a little salt and pepper), i can't handle anything else at this point. But of course i get nagged about that as well.

At this point in time, i don't know what to do. I cannot move out due to physical and psycological issues. I don't know how to drive (i get really panicy when i'm in the car not to mention motion sick). I have tried anti anxiety meds, i flipped out on the lowest dose of the mildest one they had. i don't know if i'll be able to return to school next fall, and i might end up transferring to a local university.

My dad is not an option, as he and his wife eat out on a near daily basis (not to mention my stepsister's three young children and my half brother).

My cousin was DX

[IrishHeart]

If you have the genes and your blood test was positive and you have resolution of symptoms with a gluten-free diet, you have Celiac.

What's the debate about?

You need your own strainer and you need family support. You are being CCed otherwise. And if YOU have the genes, THEY have them too!....it came from somewhere...that's why it is called an autoimmune hereditary disease.

Sorry your family is not more supportive.

You may wish to give up dairy for now, if it causes your throat to burn.

Hopefully, your anxiety may lessen the longer you are off gluten. Mine did, but I still battle it from time to time---when gluten sneaks in accidentally. It came upon me when the celiac triggered for good in me and I am not at all happy about it. I even had trouble driving too---but not anymore.

But I believe most symptoms will resolve in time. You are seeing results, so hang in there.

Best wishes!

[ravenwoodglass]

I really feel for you living in such an unsupportive family. It has got to be really hard for you. Can you find a part time job somewhere that will give you enough money to get your own stuff without having to ask for the cash from the family? Some colleges will have a work study sort of thing or perhaps you could tutor another student in a subject you are good in for some extra cash. Perhaps student loans or grants might give you enough to be able to live on campus or share and apartment with some other students.

If your family is giving up stuff that you have told them they don't have to and then resenting you for it that is really not fair. I wish I had a solution for you other than getting out of there and I hope things improve for you soon.

[shadowicewolf]

Thank you so much, you have no idea what it means to me.

I've been living off of the rest of my student loans for this semseter. Currently i'm not even on campus (i've been doing online courses because i've been really sick), so i'm at home. When i visited campus on the 24th just getting down their nearly killed me (had to use my inhailer twice). My school is about 60 miles away from home.

I just have no idea what to do. My new primary doesn't know what to think about this (she won't say as she doesn't know too much on the topic), my old primary was the one that dx'd me (ended up switching because she wouldn't listen to me). I even had to go to a nurse practitioner (who my mom really likes) and she originally dx'd me with gluten intolerence. My GI doctor won't listen because i didn't have any evidence of it in my intestines (once again you know how i feel about this), and i've yet to go back to see him since i had the gene test done (due to gallbladder surgery and such). He said if my anxiety continues he'd put me on a medication for it (no thank you).

I'm so tempted to do the gluten challenge just to show them how sick i get and to prove to them that this is what is going on. Despite the fact that i came home almost every weekend last semester, they really didn't see how sick i was.

They seem to think my blood test was positive because i had been and i quote "eating so much gluten at the time and thats the only way it would". I've tried to show them, and to no regard.

As for the milk thing, my throat has yet to fully heal (thus why i'm on a bland diet). It is very very raw.

As for a job, i don't even think i'll be able to get one. I have a very hard time doing something for the first few times (for example putting up dishes in a new house or mowing the yard). I forget things very easily no matter how hard i try. It dirves me mad and i know it will drive any potional employer mad as well.

Even if i do the challege (to which i know i'll get very sick from it), i really have nothing to loose. If anything this will stop their commenting and such, and maybe get my doctors to listen too. Right now i'm just taking 4 online courses, outside of that i'm sleeping :/

[AVR1962]

Hang in there! I just posted last week about the same type of lack of support from family. I think it is hard for people to understand unless they too are experiencing what you are. My daughters actually had problems with glutens first and I have to say I did not understand fully until I realized it was my issue too.

Your best defense to feeling better is keeping that diet as clean as you can, regardless what anyone else thinks or says. I know it is not easy. Focus on you, your health and what you need to do for yourself.

[pricklypear1971]

Get yourself a crock pot (YOURS) and cook YOUR food in it. Buy a toaster oven (you can bake in it). BUY a loaf of gluten-free bread.

Fight to get healthy enough to move out.

Sometimes you've got to pick your battles, and right now you must CHOOSE TO SAVE YOUR LIFE.

You can't change your family but you can survive them. Maybe later y'all can repair the emotional damage but right now your top concern is getting healthy enough to have a life.

Stop worrying about your doctors validating your illness. When you are well enough to move out, and you finish school, and are employed you can pick whatever doctor you want who will give you whatever dx you think you need.

[pricklypear1971]

Sounds like your Dad's house would be great - freedom to cook since they aren't.

[shadowicewolf]

I tried talking with my mom about it. It didn't go over very well. She keeps saying i need to eat better (i really am trying but a lot of foods irritate my throat, she does not understand this), that i'm somehow hurting myself by not taking a vitamin (to my defence it is a vitamin for 50+ year olds... no... i'm not taking that), and that its somehow my fault that i can no longer eat gluten because by her logic i ate too much before getting sick with the flu or something like that. She's sick of taking me to the doctor as well. -sigh-

So basically its all my fault, as per ususal.

I told her flat out that i'm not going back on it just because she wants me to. In fact next time i go to walmart i'm going to get a few things i need (and maybe order a bread machine online). Regardless.

Going to my dads is not an option. I would be harped on worse there then i would be here. Nor is moving out.

[ravenwoodglass]

I tried talking with my mom about it. It didn't go over very well. She keeps saying i need to eat better (i really am trying but a lot of foods irritate my throat, she does not understand this), that i'm somehow hurting myself by not taking a vitamin (to my defence it is a vitamin for 50+ year olds... no... i'm not taking that), and that its somehow my fault that i can no longer eat gluten because by her logic i ate too much before getting sick with the flu or something like that. She's sick of taking me to the doctor as well. -sigh-

So basically its all my fault, as per ususal.

I told her flat out that i'm not going back on it just because she wants me to. In fact next time i go to walmart i'm going to get a few things i need (and maybe order a bread machine online). Regardless.

Going to my dads is not an option. I would be harped on worse there then i would be here. Nor is moving out.

Go ahead and take that vitamin as long as it is gluten free. The only main difference with it being for someone over 50 is it may not contain iron since women over 50 don't in general need iron.

You may want to see if you can get some counseling to help you learn to deal with her a bit more effectively. I'm not saying you are doing something wrong or that you are 'unbalanced' but rather that he/she might be able to help you get your Mom to listen to you a bit better.

[T.H.]

I would show your family this:

Open Original Shared Link

and this: Open Original Shared Link

The first is an interview with Dr. Fasano, the man who got the medical community to accept the biopsy as the gold standard. In it, he mentions the fact that he's trying to change that, because research is showing it to be out of date and flat out wrong.

The second is an article with more information on that subject, including the following:

"What is the most accurate method of diagnosis? While many of you may have been told that the intestinal biopsy is the gold standard of celiac testing that data seems to be antiquated according to many researchers who consider the test to be too gross and not the sensitive early marker needed to prevent serious health problems.

The American Journal of Gastroenterology 2006 reported:

[Reba32]

are you intolerant/allergic to nuts, or you just can't eat them because of textural issues? If you can't drink milk because of dairy intolerance, and the nuts issue is only for eating/chewing, try some almond milk for a calcium drink. Unsweetened/unflavoured is best, you don't need sugar.

The 50+ vitamin is fine, it just doesn't have iron in it. If you eat meat on a daily basis, you likely don't need iron supplements, unless you've been diagnosed anemic. And if you're diagnosed anemic, then your doctor would likely have given you a 'script for iron tablets.

Most people don't like to have to change their own life because of someone else's "issues". It's too much hassle for them. But if you have positive blood results and positive genetic results, then you have Celiac. The biopsy was likely not taken from a correct spot on your intestine, apparently it happens a lot.

A whole, natural foods diet is best, especially initially after diagnosis. Your intestine will heal quicker than if you only eat packaged manufactured gluten free foods. Stick with what Mother Nature intended to be gluten free. Meat and vegetables and fruits.

[sariesue]

Have you looked into supported living environments? They do exist for people with medical conditions who can't live on their own. Your signature says you have aspergers and adhd are you currently getting treatment including therapy for those conditions? If not, look into it as it seems like it would help improve your overall quality of life.

[shadowicewolf]

Thank you for the links, i'll show them that.

I have no allergy to nuts and such. Just the texture issue.

I've been on and off theraphy for years, it really hasn't worked for me :/

and thank you again.

[butterfl8]

BTW- you're taking four classes online while feeling all kinds of, well, not good? Way to go!! That's really great! I just wanted to tell you that. Every step you take for yourself is great, just keep on going the way you are, keep doing what you need to for yourself.

-Daisy

[shadowicewolf]

Thank you

I needed something to keep me busy and i didn't wanna take a medical leave from school sooooooo