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Why Do People Have To Be So Mean?
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50 posts in this topic

So, anyway, this morning I am talking to my parents and telling them about this book I bought last night (Dangerous Grains) and how just about every major health problem I've had in my life can be linked to Celiac/malabsorption.

I was so excited about the idea of a gluten-free diet healing me and helping me to get rid of so many troubles that never seem to go away. My dad said, "Don't count on it. Don't get your hopes up. You don't even know if going gluten-free is going to help you at all. Don't get so excited about it getting rid of your problems because it probably wont."

:angry: Why does he have to be so mean when I need hope now more than ever?

BTW - I think he has it (Bipolar, thyroid problems, neverending stomach pain, extreme anxiety/depression, gingivitis, etc...).

I really hate him for ruining my good mood. It's not easy finding one lately :(

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You know more about celiac disease, healing, etc., so don't let anyone tell you that it won't work ;)

Looking at your signature: they are running tests, and it appears that dental problems contribute to celiac and that you can even predict whether someone is celiac or not by their dental enamel and ridges in their teeth. Depression/moodiness definitely improves, greater feeling of healthy in general, and though I don't know if osteo. can be stopped once it's started or not, it will definitely help your osteoporosis to be on the diet--more calcium, vit. D, and other vitamins and minerals will be absorbed. I don't know what other symptoms you have, but I can tell you that that should correct with the gluten-free diet. I find, also, that the little things you didn't realize before get better, as well. Maybe slight fatigue, slight muscle or joint pain or something, those little things that you're not thinking of right now, as you have bigger things to deal with. Keep your chin up :D

-celiac3270

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Don't let it get you down. When I first started pretty much my whole family all looked down on it and didn't think it was the problem and thought I was getting too involved in it and getting my hopes up. I could talk till I was blue in the face about it but they didn't want to hear it...some have got more supportive about it now but some are still really stubborn. Just think...after you go gluten free and start feeling better you'll be able to say...I told you so. :D

I noticed the same thing celiac3270 did...alot of the things you said in your signature that you have tie into celiac. I have little back spots on my teeth yet I have never had a cavity in my life..there are just little spots on my back teeth. I didn't get them till I got sick and they started to come then. I talked to my dentist and he said talk to a doctor that can be correlated with other things. So the doctor at the time blew it off and said talk to your dentist you must have cavities :lol: I said well my dentist said they weren't and sent me to you...she was stumped...needless to say that was the last time we saw her.

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My dad said, "Don't count on it. Don't get your hopes up. You don't even know if going gluten-free is going to help you at all. Don't get so excited about it getting rid of your problems because it probably wont."

:angry: Why does he have to be so mean when I need hope now more than ever?

Try not to take it as mean - I certainly didn't read it that way.

It's easy, with all of the things associated with celiac disease, for us to pin _every_ symptom we've ever had on it, and hence assume that once we go gluten-free, we'll have all those things go away. And that's a pretty large expectation, given the number of things that can go wrong with the human body.

Getting your hopes up too high - that everything will get better, that it'll only take a week, that it will solve all the problems - and can lead to a big disappointment.

But you do know what's best for you!

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:(

It's important to know how to detach from some people.

Some of us our overall recovery of good health has been uneven and has taken years so far, me included and there was someone who said to me recently my gluten-free diet appeared to not be doing me good so I am just ignoring that point, well I think I managed to explain that these things happen slowly and they are tied in with so many other things.

If you are told things like this at this early stage well just ignore it, if the person harps on too much try and avoid them a bit ... We definitely have to assert ourselves though and tell people what we're doing and we're doing it because we know we need to.

Yes it's disappointing and disorienting, just when one needs people around one to help one along life's journey.

I actually feel a stabbing pain just beneath the ribs when people try that line on me.

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Improved health and feeling much better is proof enough.

I know that chronic health issues are well...chronic. I also know that a gluten-free diet healed bowels will make a difference. If your thyroid is stable and managed well that is wonderful. My osteopenia has not shown any significant positive changes in my past two dexascans even with the gluten-free diet and ample amounts of calcium, magnesium and Vit. D. But I must say that getting adequate amounts of exercise is still a challenge for me.

So I do hope that you will feel much better and heal!

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Some people just can't accept the fact that food can do so much harm to some people. I have reached the point if people don't want to accept it then TOO DAMN BAD! :angry: That is their problem NOT MINE! :angry: I will do what I have to do to get and stay healthy. We believe you because we've been there and done that. You're going to have to grow some thicker skin but that is not a bad thing. You will overcome this and you will be glad you did.

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I know how you feel... I've had some issues with my brother... but I don't think your family is being mean.... people often nix what they don't understand, many people just resist new ideas... a lot of people have trouble with the idea that food (which of course we all need) can cause problems. And lastly your parents are probably worried about your health issues and don't want you to be disappointed if this doesn't work for you. I think to a lot of people the idea of just changing your diet to fix a lot of health issues just sounds too easy.

I know when I told my brother... (my family is aware of my 10 year battle of digestive problems) he said, diet fixed it???? What else did they give you? Its just hard to imagine that not eating wheat (thats how my brother puts it) and fix all the problems I had.

I bet they will come around, give them time.

Good luck, Susan

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The bottom line is that once they see you are starting to feel better they can't argue it! So, for now make a plan and stick to it. You can always come here for support.

When I first started to go gluten-free i noticed that I didn't wake with horrible headaches and my gut was actually calming down. then the diarhea stopped ...yeah! Once I had my endocopy, my GI said that everything looked good and that i didn't have celiac. I had the biopsy done at 4 months gluten-free.

A few days later, she had me second guessing myself and I wasn't as careful scrutinizing everything I ate...(although I wasn't intentionally eating gluten). The morning after my birthday party I was sick as a dog.........I was homebound for 3 days because I felt so poorly. Well, that just confirmed to my family even more that I couldn't have gluten.

Another time my mom slept over and witness first hand how sick I got after eating a contaminated rotisserie chicken from the grocery store. Within a half hour I was sick and crying and bloated........My entire persona changed. she saw how much I was suffering and again it lasted for days. Now at leat they know that I can't have it. The biopsy was useless to me. You have to see for yourself how you feel afterwards but you need to give it time. I am still working on my diet...but then again I have a lot of other food allergies. So hang in there...........

Oh....and when they finally do get it....they won't scrutinze like you do.

here's an example: my mom made dinner one night and discussed the menu with me several times. she was making shrimp and I told her to make it plain as she does with all my food. Well, once I saw the shrimp it was baked in the oven with breadcrumbs smothered over it! I told her about it and she said ...just wash it off then. that's when i freaked out. my dad quickly went to the fresh fish market and bought something that I was able to grill real fast. they sure don't make that mistake anymore!

It takes time....and is a learning experience.

good luck, :rolleyes:

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We ran into the same problem with some extended family members, even to the point of attempting to sabatage our diets. After a few months when we started to see so much improvement, most came around and became supportive. The one who did not is just going to be that way no matter what happens in life. Where he is concerned, we just roll our eyes and go on. We like how we feel now. That is all that matters.

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I agree that even when they "get it" they do not scrutinize everything like I would and this includes my non gluten-free husband. I had to get on him the other night as he was eating a turkey sandwich on a very glutened bun and he went to stick his gluteny fingers into my jar of (VERY EXPENSIVE) gluten free organic pickles... I SCREAMED at him "do not put your glutened fingers in my gluten-free pickes!, use a fork" he promptly said "oops" and got up and got a fork, but now I'm wondering if he double dipped on the mayonaise <_<:rolleyes:

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All of you seem to have such a balanced and accepting perspective when it comes to other people's ignorance. Does that come easier along the way?

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:o

In my case, no! It's only when I get behind the computer and look at this wonderful board that I come over all philosophical!

The entire economy is built on wheat, caffeine, aspartame, glucose syrup (dodgy GI), hydrogenated oils and MSG. It seems that if I need to avoid one of these I'll certainly not be exempted from any of the rest!

Then there are the medical types. They are good people but nowhere as up to speed as the text books all boast. Like Mela I have been through the second guessing phase.

I live alone, never eat with friends and seldom with relatives. I have hardly any eating out places. If I go anywhere I go unprepared and panic or get faint, or I take a week's supply of picnics just for one day.

Who needs problems with relatives when you can have problems with the entire infrastructure!

I have had people that are important to me make difficult remarks though and that's when I get a stabbing sensation beneath the ribs as if, "how can they say that to me?"

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I didn't used to, but we all have our own areas of ignorance - areas that other people come naturally. I know all kinds of things about a number of subjects, but know next to nothing about a number of other subjects. (I can keep a pet bird alive almost anywhere, but don't ask me to watch your pet snake; it'd end up dead.) I disliked people being as ... annoyed with me in my ignorance over a particular subject as I used to be with them, so I stopped doing it.

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I must admit,when my husband finally found out what was wrong,he had very high hopes for the gluten-free diet,especially as he has been ill for many years.It's taking a little longer than we hoped as he's had to go on steroids to aid recovery-but it's in the right direction.

My husbands family do not understand the concept of a gluten-free diet-for instance,whenever he see's his brothers they always try to make him have a beer-'come on,one won't hurt you'-yes it will through gritted teeth.

Hopefully you will begin to feel better in yourself soon-then as said earlier,your parents cannot deny the benefits.

I would like to add though,that often my hubbie has no appetite-and I do tend to keep tabs on what he has eaten.I always ask if he's eaten,or if I can get him something he likes-it's habit.But,like your parents,it's only because we care!!

Give it time!

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OK..no matter how hard i try I am still having a hard time making things stickl We took my mom out for mothers day yesterday....... I was already have gi problems in the morning. My hubby and i went to Barns and Noble and decided to have something in starbucks. I had a decaf espresso which irritated my gut and started a bad day off.

anyway, i was so paranoid about eating and went over everything with the waiter. i insisted that my food be plain and he even argued with me that my entre` came grilled with fresh herbs.....(not prepared ones)..he insisted there were "grains"

on the seasonings. I told him that I preferred plain....nothing on it. when it came back it looked life there was fresh parsley, fresh garlic (which i scraped off because it irritates me), salt and too much fresh pepper. I ate very little of it as my gut started twisting from the salad. I was so bloated and in such pain but sat there politely and smiled.

we were all given maginficent mother's day deserts whichwere so pretty to look at......and I passed along to my niece. By the time we left i had to stop and get some mylanta at CVS to help calm things down.

My gut hurt so bad but i didn't feel sick yet so I thought i was safe. I snacked on some sweetened banana chips i got from the health food store. Now i am not sure if they were safe.......I was up during the night several times sick to my stomach...sour tummy, congested, muscle pain, headache. I feel so wiped and out of it. I am so depressed over this. I just can't get it right! so much for having the drs at columbia tell me ..."the good news is that you are not celiac".

OK...here we go with another wasted day. I had some appts today that I am going to have to cancel.

I read the label on the banana chips: coconut oil, bananas, sugar.

I had the same chips form another manufacturer and the label read: coconut oi, banana, sugar, banana flavor. I'm thnking the the banana flavor may have gluten...even thought htey didn't list that as in ingredient.

also, with all the mother's day chaos...it's possible that my fresh herb seasonings on my veal also had some bottled spice with gluten. I just don't know and can't figure it out today. I'll write in my food diary and have my nutrionist help me to figure it out.

gotta go rest.... :(

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Mela, I do feel for you! If my food, ordered plain, had come with seasoning on it, I would have sent it back to the kitchen. The waiter arguing about it would have meant a visit with the manager. There was no excuse for you not to get your food the way you wanted it. Rest, and get better!

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Oh Mel :( I'm so sorry you had to go through that :(

I hope you feel better soon. *hug*

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Mel-

do you know if caffeine bothers you? i can not tolerate it at all, and i can not even do decaf. a decaf starbucks would have been killing me. even herbal teas seem to get my gut going. just a thought...

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Bean--

If your dad has some mental issues, then maybe it isn't easy for him to talk to you. Although my family has been supportive of my food issues, in other areas of my life they do tend to have a "well, you can try, but it won't do you any good" attitude.

And I think you'll start feeling better, and be better able to cope with people.

And thanks for your words on my pizza thread. I mean, yeah, it could be worse, but in the Sharonverse (that would be the universe of me), pizza was a Big Deal that day. Although of course not being sick is even better.

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Sharon,

Thank you. I think you just made a really, really, really good point that I needed to hear (see, whatever)

"I think you'll start feeling better, and be better able to cope with people."

I think that is absolutely true. Right now I'm doing this "gluten challenge" thing where I'm supposed to eat gluten at every meal so that my biopsy will show the full effects of celiac disease. It absolutely sucks and I am at an emotional all time low.

But... the biopsy is on the 19th, so not so much longer of making myself sick.

Everyone Else,

Thank you for your support. Sorry I've turned into a power-whiner!! But I really, truly appreciate all of the kindness and compassion that I've found in this forum. Thank you for understanding so many things.

- Sincerely, Michelle *hug*

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I'm sorry your dad acted out toward you. I know that in some experiences with my own parents (I had a broken clavicle that was never diagnosed. Prior to surgery, the MD asked my mother at what age I had fractured it -- she said that I had NEVER had a "broken collar bone" and she would have known it if I had, and was SOOOO defensive.) Perhaps your dad may be having a guilt pang that your disease was never diagnosed -- thinking that that they didn't do enough when you were younger. It's easier to say that it's probably not the problem and won't help than to admit that everything possible wasn't done for your children.

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I asked my husband a few weeks ago how I should act with people who just don't "get it" like my boss. Is it my job to "teach them a lesson"? He made a really good point and turned it around on me. He said, "Really, what you need to think aboput is how YOU"RE going to handle it when people just don't get it because there will always be people who don't get it for lots of different reasons." I thought that was a really good way to think about it.

I can't control people's reactions when I am sick and have to miss work or class or don't show any sympathy or compassion. That's their lack of understanding or intolerance (I hope it's just a lack of understanding) but what I can control is not letting it get to me by reminding myself that there will always be people who don't get it and not to get angry. Waaaaaaay easier said than done, believe me. But I have noticed something. All those people who treated me poorly and didn't take me seriously in the beginning are now like, "Wow- you look so much better. You really must have been sick." Wel.... duh! :D

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Thanks for the replies........next time...the food will go back if it doesn't come plain!!! funny thing is that I sent the salad back that day because it had dressing (even though they assured me it was olive oil and balsamic). I don't do well with ANY vinegars! I thought I would be safe with the SUPPOSED

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sorry about that....i hit the wrong button!

with the SUPPOSED fresh herbs!

Naked means naked...and if it's not...it's going back. I've also learned that I can't do FRESH garlic.

I had a good appt with the nutrionist today and we touched on a few things that I didn't figure out on my own. The banana chips are ok...so I'll try them again in a smaller dose. We are wroking on food rotation.

I'm also starting on vitamins.....she referred me to a compounding pharmacist who maeks them free of all those allergens...especially gluten.

My dr sent me for blood work this morning for the burning that I hae been having in my legs. We can now officially add neuropathy to the list.....but he thinks it might be from a vit deficiency as he doesn't think I am absrobing well enough.He also thinks my diet is very limited so I am not getting enough variety. Hopefully some of the B vit will help with the neuropathy...if not...then we contemplate a prescription.....hhhhhmmmmmmmmmm...hate to do that.

Oh well....that's the update.........let's just take it one day at a time. Learning a little each day!

Thanks again,

:rolleyes:

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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