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dani nero

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Hi everyone.

So the doc mailed me again without calling. All she mentioned this time was that my thyroid is free of illnesses (thank god!) but that my TSH levels are high, so she wants me to come back in four months for another blood test. I'm guessing she just wants to check to see if it was a one time fluctuation or something. She's just going to leave me hanging for yet another smacking 4 months waiting. I asked for the test results themselves but didn't get them yet.

Does having elevated TSH levels but nothing else mean that my thyroid isn't broken yet?

Can this be the reason why my breaths are on the shallow side and why I get fatigued often?

As for parents, I stated before that my mother and hubs are the only two who take me seriously, but I was wrong about that. My parents are here and my mother is acting like we have no food at home just because everything is gluten-free.

She was like... "I didn't give your dad any breakfast this morning", so I ask her if it was because he didn't want any or if she didn't find anything to give him.. and it's obvious what her answer was. I told her I thought that was strange because I showed her where the bread, cheese, jam, butter, and crackers were. I even bought them all the types of gluten-free cookies available but it's not good enough. Then she goes on and says things like: It's your fault you're having problems, you made your body not used to gluten.. you should never have stopped eating bread or this wouldn't be happening. She even assures me my DH is caused by dish-soap.

I don't really want her support or approval anymore anyway. I don't care if she takes me seriously or not. Although it hurts that she's not believing in me, I'm not going to waste any more time obsessing over getting an official diagnosis just to prove it to them. They would probably still not take me seriously even after getting the diagnosis!

Doing a gluten challenge will probably end up breaking my thyroid. I'm not doing it for their sake. I want to stay healthy.

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Dani, I'm so sorry your Mom has "turned on you". Have you given her any links to info on Celiac? Books? I suppose you know her best, so if there's no point trying to get her to understand, you're just going to have to let it go. Right now you need to concentrate on your health, and let the naysayers go their own way.

But you might ask her why she doesn't have a reaction to say, watermelon, after not having eaten it since last summer. Or mincemeat pie that she hasn't eaten since winter. Or any of the other seasonal foods we only eat for a few weeks out of the year.

I can't give you any advice on the thydroid thing because it's something I've never dealt with. But I bet you'll get some good info from "the gang" momentarily.

Hang in there and don't let them get you down. (((((HUGS)))))

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Dani, I'm so sorry your Mom has "turned on you". Have you given her any links to info on Celiac? Books? I suppose you know her best, so if there's no point trying to get her to understand, you're just going to have to let it go. Right now you need to concentrate on your health, and let the naysayers go their own way.

But you might ask her why she doesn't have a reaction to say, watermelon, after not having eaten it since last summer. Or mincemeat pie that she hasn't eaten since winter. Or any of the other seasonal foods we only eat for a few weeks out of the year.

I can't give you any advice on the thydroid thing because it's something I've never dealt with. But I bet you'll get some good info from "the gang" momentarily.

Hang in there and don't let them get you down. (((((HUGS)))))

I'm in complete agreement Bart! I'm supposed to be focusing on feeling better.

Thanks for the hugs, I needed them :-)

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Dani, you've gone above and beyond to provide delicious gluten-free food for your parents. So sad that they cannot see it that way! Would they perhaps enjoy bacon and eggs or something else naturally gluten free instead? Not that they need to be catered to but perhaps they would enjoy that more.

But the above is not the point. It is difficult to go through this in addition to your additional medical problems plus not having support from your parents. I am thankful that your husband gets it. And you are right that you do not need approval (though it is nice to have, isn't it?). You just need to keep taking care of you. :) The older I get the more I realize that life seems to get harder and harder. :(

Maybe it is time to treat yourself to a new book or a bubble bath. Or buy yourself some flowers - you deserve it!

Here are some more hugs to add to Bartful's... (((((HUGS))))) Now you have lots! :D

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((HUGS)))

Tell your mother that it is impossible to "make your body not used to gluten". :rolleyes:

Totally medically impossible.

If we do not eat a food for years, we do not suddenly develop an inability to eat it. I don't have lobster except in the summer.

I don't eat pumpkin except in the fall. I cannot afford truffle oil, but when I can I buy it once in a millenium , it is wonderful. :)

This kind of logic is...illogical.

I am so sorry your family is in denial about your DX. Tell your mother DH is caused by gluten. Period.

And your thyroid hormones can fluctuate. You cannot "break" your thyroid, okay. Your TSH is elevated --which means you are a bit hypothyroid, but I was too when I was on gluten. I swung to hyper when my doc prematurely put me on meds for a slight elevation and it caused me MORE problems for 2 years.

Mine is fine now. I am within normal range.I take no meds.

Your doctor is not wrong in watching them for a few months. She may not want to start you on meds if they are not elevated enough or if she believes they will normalize off gluten.

Tell us the numbers when you get the report.

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Is it really bad of me to want you to do the $400 gene test just to tell her that you probably got it from her side? (I know the gene test doesn't tell you what side it came from but it would still be great to say)

(((HUGS)))) Sorry she doesn't understand. I made gluten free pancakes from a mix (add blueberries) and my parents couldn't tell the difference. And the one time my dad craved a biscuit from Hardees....he got in his car and drove to get one.

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This kind of logic is...illogical.

Clearly her mother isn't Vulcan. My MIL says some equally stupid things, so I totally understand the frustration.

I'm not sure I'd be able to resist the temptation to tell her where the closest local "greasy spoon" diner is and when it opens for breakfast. I don't know how people can be unhappy with naturally gluten free foods for breakfast. Eggs, grits, bacon, smoothies. Some people just like being difficult, maybe she's one of them?

Anyway, it's great that you decided that you don't need her approval or support. Also great that you have your husband's support. Maybe just grin and bear it for visits and remember we're always here to vent to so you don't blow your top from holding it all in.

Oh, and more (((hugs)))

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This made me think of advice I've heard about parents trying to feed healthier food to their children, who only want 'junk food'. Eventually they'll get hungry and they'll eat what's available! (Or not, but I got a chuckle thinking about it in relation to your mum ...):)

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I think that's very clever. ;) My Mom used to say:

"This isn't a diner, you'll eat what I'm serving." And we did.

Here is what I know:

I would not allow gluten in my house to satisfy anyone's demands.

Absolutely not.

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Dani, I'm so sorry your mom is acting this way. What does your dad say? Or is he under the influence of your mom? I don't have any great or witty answers for you. Your mom is going to be the way she is & that's all there is to it. I have an idea she has been like this all your life.

I agree, you just get on with your gluten-free life & be happy & healthy. Perhaps rather than trying to convince your mom that this is best for you; you should just simply say, "This is how I eat now. Deal with it." No arguing, no cajoling, no trying to convince her --- nothing. And when she complains about the food in the house flat out tell her --- Go eat at a restaurant then. This is my house & you are being disrespectful to me. I warn you she may not speak to you for years but what else can you do?

WE love you! And we know your husband LOVES you. And we KNOW you have friends who LOVE you.

And here are some more virtual ((((HUGS))))

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My mother was the same way up until yesterday when she began to be nauseous, bloated, gassy, and constipated. So far she is on day two of this.

She would tell me what the all say. "It's all in your head."

The heartburn kicked in today.

So I guess it's not in my head.

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Thank you all and god bless you for all the hugs! I don't know what I would have done without you to turn to :-0

I decided to stop talking about any celiac related issues because she is convinced it's all in my head no matter what I say. It's actually a little better today since they loved the gluten-free pizzas I made them today!

@love2travel, indeed they have eggs, things for smoothies and several types of breakfast meats, but they can't see themselves eating any of those things without bread.. They're spoiled deadbreadheads imho.

I am taking very good care of me actually :-) I bought myself some really nice ice-cream bowls (the ones with long stands) and now I plan on going shopping for long spoons to go with the cups.. soon I'll be able to eat ice cream, I hope :-D I'm even thinking about planning a trip to Gothenburg using the travel tips ;-)

@IH, It's funny how our parents' logic used to be the only thing that made sense when we were young, and now I find my mom and dad's logic really out of it. I'm really glad to hear that the fluctuation isn't an indication of permanent thyroid problems :-) I don't want to take any more hormones! I'm guessing my doc is not so bad after all which is also great news :-D

I'm going to get my results tomorrow!

@1974girl, must have been really good pancakes :-D I already threw the "I got it from you" sentence out hehe :-)

@Adalaide, thanks for letting me vent :-)))) I remember your Mil, she was a handful :-(

My mom and dad are definitely very difficult people. Pleasing them is impossible, so I simply aim to do what I can within my limits. I used to go over and beyond what is logical to please them, but I'm a changed person now.

Can you imagine that the first day she was here, she was just looking for something to eat in a kitchen stuffed with food compared to what it normally contains. She usually wants chips which I remembered to bring, but that day decided she wanted nuts, so I cycle for 40 minutes the next day to get her nuts, then in the evening as she wants to snack on something again, she decides she wants sour candy, because nuts are after sunset food!

@ciamarie, seriously! :-D

@squirmingitch, my dad is surprisingly not against the possibility of me being celiac and eats whatever we put in front of him. He is also a very difficult person to please but he's just going with the flow at the moment which I'm so grateful and thankful for!

I did tell my mom that this is the way it's going to be regardless of what anyone wants and that restaurants can provide all the gluten they want, but I said it in a very diplomatic way as I can't bare upsetting her regardless of how difficult she can be :-) I just don't get it because she was very supportive when I was visiting them.

@Mnicole1981, I lost count of the amount of times I heard "it's all in your head". It's now the default thing I think about when something happens!

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Well it sounds as if things are a bit better today. Yay for small gifts!smile.gif

I know it's very difficult to say things to our parents which we know will upset them. It's hard to take an immovable stance & lay down the law to our parents no matter how old we get or how unreasonable they are being. They are our parents! We are programmed to try & please them.

I was very fortunate to have parents who were very understanding even when they didn't understand.

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I had a Dad who was my best friend. He felt I could do no wrong and loved me unconditionally. He had anemia, required frequent blood transfusions, had horrific ITCHING, h.Pylori and a "bad gut" for as long as I can recall, needed a heart valve transplant and finally developed kidney disease, requiring dialysis that could not save him. Sound like anything any of us know? <_< (If I only knew back then what I know now, I could have saved him :( )

My Mom, whom I think I misjudged quite a bit growing up, is much more flexible and relaxed (i.e. less anxious) since she WENT GLUTEN FREE ate 85, after my DX and genetic testing revealed I got the genes from BOTH of my parents.

Does anyone else see that possibly Dani's parents may need to be gluten-free too?? :)

Here is another thought:

You can't please everyone, so you've got to please yourself.

( with a tip of the hat to the late Ricky Nelson)

Dani, hang in there. ;)

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I had a Dad who was my best friend. He felt I could do no wrong and loved me unconditionally. He had anemia, required frequent blood transfusions, had horrific ITCHING, h.Pylori and a "bad gut" for as long as I can recall, needed a heart valve transplant and finally developed kidney disease, requiring dialysis that could not save him. Sound like anything any of us know? <_< (If I only knew back then what I know now, I could have saved him :( )

My Mom, whom I think I misjudged quite a bit growing up, is much more flexible and relaxed (i.e. less anxious) since she WENT GLUTEN FREE ate 85, after my DX and genetic testing revealed I got the genes from BOTH of my parents.

Does anyone else see that possibly Dani's parents may need to be gluten-free too?? :)

Here is another thought:

You can't please everyone, so you've got to please yourself.

( with a tip of the hat to the late Ricky Nelson)

Dani, hang in there. ;)

My parents are the opposite. They live to make sure we're living right and are secure but they sadly did it through criticism. It might be possible they're both gluten-intolerant. My mom is short and can't gain weight even though she tries her hardest to, and my dad is bipolar, has diabetes, thyroid, rash, joint inflammation, and they both live on vitamins and C medicine.

I'm finding that I'm much happier, relaxed and in a resting-state for not trying to make everything perfect while they're here ;-)

I'm sorry to hear about your dad. He probably lived happily for having you, and he's happy now where he is because you're feeling well :-)

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High TSH could very well indicate low thryoid and you need to follow up on it ASAP! If this Dr. is an Endo., you need to see another one. If not, you need to get one.

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My parents are the opposite. They live to make sure we're living right and are secure but they sadly did it through criticism. It might be possible they're both gluten-intolerant. My mom is short and can't gain weight even though she tries her hardest to, and my dad is bipolar, has diabetes, thyroid, rash, joint inflammation, and they both live on vitamins and C medicine.

I'm finding that I'm much happier, relaxed and in a resting-state for not trying to make everything perfect while they're here ;-)

I'm sorry to hear about your dad. He probably lived happily for having you, and he's happy now where he is because you're feeling well :-)

Your parents surely do have gluten-related symptoms, hon.

Thanks for your kind words about my Daddy, Dani. He truly was an amazing father and yes, he said his life was full because he had me. I am his only biological child, but he raised my older half sister and brother like his own and loved them just as much. His death sparked this thing in me for good and I prayed for guidance from him to help me figure out what was trying to kill me for the following 3 years. I did it and now, I am helping my family see it in them, too.

Coincidence? maybe. Maybe not :) I am the fighter I am because of him, no question. His last few years were filled with WEEKLY blood transfusions, being severelyitchy and always being cold and having chronic h.pylori infections, GERD, and dialysis --sound familiar? and yet, he NEVER complained. If I had only known...I know, I can't go backwards, I know.

You are wise to let go of trying to please everyone.

I did it my entire life and I have to say, it is not really all that gratifying, truth be told--especially when they can never be pleased. :D

Your parents love you, I am sure. but they can't get the brains around this yet. They will, in time. My Mom came around and is all the healthier for it.

It's okay to just focus on taking care of YOUR health right now.

;)

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I had a Dad who was my best friend. He felt I could do no wrong and loved me unconditionally. He had anemia, required frequent blood transfusions, had horrific ITCHING, h.Pylori and a "bad gut" for as long as I can recall, needed a heart valve transplant and finally developed kidney disease, requiring dialysis that could not save him. Sound like anything any of us know? <_< (If I only knew back then what I know now, I could have saved him :( )

My Mom, whom I think I misjudged quite a bit growing up, is much more flexible and relaxed (i.e. less anxious) since she WENT GLUTEN FREE ate 85, after my DX and genetic testing revealed I got the genes from BOTH of my parents.

Does anyone else see that possibly Dani's parents may need to be gluten-free too?? :)

Here is another thought:

You can't please everyone, so you've got to please yourself.

( with a tip of the hat to the late Ricky Nelson)

Dani, hang in there. ;)

I feel you, IH. My father died at 52, when I was 22, of leukemia. Based on his lifelong issues, I'm pretty sure that's where I got celiac from, and I wish all the time I had gotten sick when I was younger, because I easily could have gotten him to go gluten free with me. All I had to do was rub his arm and give him the puppy dog eyes. Total soft touch!

Dani, you are awesome, and don't let anyone tell you different. If your childish, selfish, self absorbed mother can't support you, screw her. I know it's hard when the one person who's supposed to keep you safe and healthy blows you off.

You can borrow my mom! She's awesome! Our only problem is she doesn't quite understand all the rules about food prep, so when we do something together if she screws something up she gets so upset that she messed up that she's not having fun with it. We're working on it, it's just food, I don't care if I can't eat it, I'll just feed it to my boyfriend! She doesn't mind adopting people either. I don't know if I'm willing to send her overseas though.... :D

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I feel you, IH. My father died at 52, when I was 22, of leukemia. Based on his lifelong issues, I'm pretty sure that's where I got celiac from, and I wish all the time I had gotten sick when I was younger, because I easily could have gotten him to go gluten free with me. All I had to do was rub his arm and give him the puppy dog eyes. Total soft touch!

:wub: aw bunnie. I feel your loss right here in my heart.

Sorry, hunny.

and oh boy! can I relate to the "Daaaddy? can I have...."

and it was mine. Except for my Mom, the NO! monster <_< who got in the way.

Otherwise, I would have had 18 puppies, 16 kitties, 37 bunnies, a pony and a Corvette when I was a teenager.

:D

and, P>S> your Mom IS awesome!

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Mammoth post! I had a lot to say :-p Bottom section is about hypothyroidism if you wanna skip all the crap about my life.

I am one of the lucky ones with understanding parents, apparently. (Well, not necessarily completely understanding, I'm going to have to go over with my mom at least once more just how sensitive celiacs really to avoid CC when eating over there. I suspect my dad thinks its ridiculous to avoid using the same cutting board too.)

Actually, I suppose there's another big difference b/w you and me dani, in that I have an official diagnosis. They wouldn't quite be as bad as your parents, I don't think, if I had just decided to go off gluten, in that they'd probably just let it be after a certain amount of time. The thing that's only because we've had such bad fights in the past and so we all sorta just avoid conversations that'll cause arguing...most of the time.

The sad thing is that the fights were so bad in the past because they felt like I was being lazy selfish and manipulative which hurt me soooo much because the reality was that I was badly depressed and was tired and couldn't focus...wonder why, eh? My parents too are the 'supportive' through criticism type, and up until really not that long ago, I felt like a failure, but thanks to people like my fiance who don't base my total value on how much work I do and how much I accomplish.

About your thyroid, it's a tough one. My fiance has had borderline thyroid problems for a couple years now, and even though his TSH has been outside the bounds of normal for 2 bloodtests in a row now, he's still not on thyroid meds, they're still watching it.

As for the shortness of breath, I've never heard of that being a thyroid problem specifically, HOWEVER, again looking things up for my bf, I found a surprising discovery from this article here that may be pertinent to you. In a nutshell, it says that hypothyroidism can be a cause of sleep apnea, and that treating the hypothyroidism made the sleep apnea, and the symptoms of tiredness, headaches etc, go away.

http://ajrccm.atsjournals.org/content/160/2/732.full

I dunno how much you know about sleep apnea, but there's basically 2 types, obstructive, which is what a CPAP mask helps, and a secondary one where the body itself doesn't tell you to breathe often enough. Most people who have sleep apnea apparently have both of these issues. CPAP masks for sleep apnea only really help the obstruction part.

So, how this all relates to you, if you have a form of secondary sleep apnea, where you body doesn't tell you to breath enough, I see no reason why this same phenomenon that can happen during sleep, can't happen while you're awake.

The shortness of breath thing I could see as indication for or against secondary sleep apnea. 1. the idea that, hey, you're not getting enough oxygen, I'm going to feel short of breath or 2. The disorder itself makes it so you don't feel short of breath, but yet you'll be tired. Since it's only really studied during sleep, and since 'shortness of breath' isn't something a sleeping person experiences, it's unclear

Anyways, just something you might want to look into further.

BF has sleep apnea and he's got a CPAP mask, (after a lot of me telling him he doesn't breath right at night and get it looked at!...I'm such a nag when it comes to his health.) However, I still hear his breaths are really shallow most nights, and there's still often long pauses between his breaths, and of course, he's still tired very often. I keep telling him to get his doctor to finally put him on thyroid medication, but my bf's stubborn as a mule and has been so 'burnt out' for so long that I don't think he knows what it's like to NOT be tired, so he doesn't see how lethargic he really is :-(

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and they tease ME for long posts! :lol: (just kidding, hon)

and just to complicate things, shortness of breath can also come from anemia.

I was terribly SOB while quite ill with celiac. It's gone now that multiple anemias were treated (iron def, B-12 and folate)

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Dani- I really like your attitude, I think it is a mature and realistic approach to another one of the problems we celiacs are lucky enough to get to deal with. Growing up my dad wasn't in the picture but my mom was always very approachable. My grandparents played a pretty large role in my early development though and sometimes their logic could be a little trying. As pastors, they favored their faith over logic and once suggested that I was allowing the disease to have control over me by not believing in god to heal me. I didn't agree, but I still love them. I still wouldn't trust them to make me gluten free food however.

Sometimes we gotta take what we can get.

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Yeah, despite all my rambling about hypothyroidism, plain old nutrient deficiencies seem far more likely to be the culprit of shortness of breath.

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Yeah, despite all my rambling about hypothyroidism, plain old nutrient deficiencies seem far more likely to be the culprit of shortness of breath.

No, you made good points! :)

and it could be a combo of both. Her TSH is elevated.

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Irish, Bunnie, my heart goes out to you. My dad was my best friend too, and I know I've told you the hearbreaking story of my Celiac Mom. But as Dani said, they are all happy for us that we are feeling better. And they will be with us forever. (((((HUGS))))) to you both.

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