dani nero

My dear he's the one who should be doing the gluten-free cooking for both of you, to help out because you're obviously having a hard time keeping up with everything. A real man supports his wife through thick and thin and doing all the house work when she's down is part of it. This dude you're with belongs in a cave.

If I were you I'd dump his greedy selfish butt and look after myself.

Sorry if that sounded a little harsh ;-(

Do you have any other dresses which fit the occasion or can you borrow one from a close friend or relative. Since your plans have been tampered with you can do some compromises and save what you can of this day for the sake of enjoying it. Might not be the outfit you were planning to wear but you would probably still look good in a different dress that doesn't require a flat stomach.

I'm sorry this happened to you, and you were out celebrating last night.. nothing wrong with that. The glutening just happened to happen at the wrong time. Hope you are able to enjoy this night. Don't let gluten get in your way

looks almost identical to mine!

It can bounce around, depending on if you were fasting when the blood was drawn. Mine was 5.3, 4.3, etc. back then.

But now, it is always between 2.4 and 3.0 . If I have eaten, it is lower. If it is a fasting draw for my blood glucose, the TSH reading is lower. (I did not know that until my doc told me)

I think you may have answered your own question here, honey!

You are building muscle and stamina and so, you can "up" your activity now and when you exhaust your muscles, then you're there.

Then, slowly add more time.

Add slowly, but just keep going. The burning sensation gets less and less.

Make sure you are HYDRATING!!! Your muscles need it. Lots of water.

I am no expert; just sharing what I have learned the hard way.

In my own experience the expert is the one who lived it and figured it out, not the one who read about it and spreads it around.

Thanks for this IH :-)

I have to chime in here. I "pushed through it" for the 3 years I was unDXed and it made my pain level worse. I developed neuropathy and parasthesia and did significant damage to my muscles, tendons, joints and ligaments. All because doctors, PTs and chiropractors alike chastised me for not doing more. I had major muscle mass loss and bone pain, but no one knew why.

If you are still recovering from malabsorption, your muscles and joints may not be able to do strenuous labor or exercise. In fact, it is contraindicated. My doc has told me to proceed cautiously.

Start slowly. Walk. Go aS far as you can the first time.

The next time, go a little further.

Build up to bike riding and weight training with 2 lb. weights and then, increase your reps.

I think we need to understand here that malabsorption creates major problems and do not let anyone tell "you you can do it, you're just out of shape". I heard that BS for 3 years and I suffered while trying to do what was recommended.

Give yourself a break,Dani. You're still healing.

A TSH of 4 is not critical, but some endos in the US think 3.5 is the upper range for "normal" limits. The range is .8 for hyperthryoid and 3.5 for hypothyroid

the scale looks like this:

hyperthyroid .8 -----------------3.5 hypothyroid

so, 4 is slightly elevated BUT the old range was up to 6.

Your doc may be watching you at this point to see if it comes back in range off gluten, thereby sparing you the need for meds?

Ask her.

The second TSH scan was 5 not 4.. but that's not too far off is it ;-)

Gosh that must have been tough for you, but you proved to be the toughest one in the end IH :-) Well done!

It seems that you've experienced the same type of aching burning sensation that I feel when I paddle.. Sometimes it just makes me want to screem out!

My muscles can handle walking ok, so does that mean I can continue cycling? How can I tell if I've reached my limit and when to push more? I'm really liking the stamina I've built and the past few days I found that I am not getting as fatigued as used to.

Dani,

How long have you been exercising now, and how sedimentary were you before it? Your muscles SHOULD hurt some, and you SHOULD get tired if you are pushing yourself. Gosh, I remember when I turned my life around with exercise... a 15 FOOT jog would have me stopping to catch my breath, and to compare... in November I will be getting my black belt in American Freestyle Karate... BUT it took a decade to rebuild my muscles/etc.

In general, if you always stop the moment you feel a bit of fatigue, or ache, you will not get beyond that point. You do not want to over do it, but I agree with your doc, push through it. Set goals, take your time, and expect this to take a while.

I've been cycling (not hard-core but like back and forth to the market which is around 40-50 minutes of hill-type road) for around two years I think. I didn't mean the type of fatigue one would feel while working out, that I can handle. What I don't like is the burning sensation. The fatigue I feel comes after the workout and the next couple of days (around a week or more) I would not be able to do it again and it would be a little harder to move.

The ache is like a stretching burning sensation as if I hadn't moved for ages. I am trying my best to push further than what I usually would now and these few days things have actually improved.. maybe my muscles are being fed well now ;-)

I thought The same thing only to find out becoming gluten free was only the beginning.

As you stated however,at least we know what the problem is and how to fix it and ita not fatal. we can also go to dieticians for help but the experience that exists here is all we need: )the members are like human celiac encyclopedias and not only do they communicate but also feel compassion.

I got my blood tests today, and sadly, I did understand correctly, and was right about the doc not checking for vit and mineral levels in my blood. She checked for diabetes, hormones and the IgG level only.

TSH was 4.something the first time and 5.1 the second time.

IgG was 7 .. or maybe it was <7.. the paper is in the car and I'm writing from memory.

No way to know know if I'm sluggish due to my thyroid being lazy, due to sleep apnea, or me lacking something. How long does it take for a celiac to start absorbing everything nutrients properly on their own? I actually am starting to feel a slight improvement in my health. It's small but it's there!

I did complain to the doc about fatigue and muscle pain while exercising and she told me that it sounds to her that I'm not very well trained, and that whenever I feel tired is just the time to push myself harder to overcome the fatigue and be in better condition. I did that, and I do feel a little more alert actually, but my muscles still have to ache when I do it.. even hurts to go up the stairs. It's the kindof scary sensation one would feel while they are stretching hard for the first time.. you know when you feel your muscles are burning, about to tear and you can't wait until you're done counting so the stretch is over lol! I'll just keep on pushing and hope I overcome it because I'm liking the extra alertness :-)

@IH: It broke my heart hearing about your dad's symptoms! God bless his soul.

@Bunnie: My mother is just so convinced she has it all figured out and that I need guidance.. I think.. she's still a loving mother and really does her best from her own point of view. As Squirmingitch stated she's my mom after all, which means I could not exchange her for any other no matter how magnificent they are (meaning your mom). Never send her overseas and always stay close to her :-)

I'm also sorry to hear about your dad, and god bless his soul too :-)

@cavernio: I actually didn't tell them that I diagnosed myself or that I learned most of what I know from this community. I told that that the doc couldn't officially diagnose me because I'm on the diet, but that SHE was the one who told me it might be celiac and how to do the diet properly. I tell them "the doctor said".

In any case, I do actually sleep terribly and wake up a million and one times almost every night. I read what you wrote about sleep apnea 2 times and still have to read it a few more times to be able to fully understand it as I'm feeling a little low on IQ currently ;-( but I did understand the conclusion and thank you for thinking it up. It will sadly take a while for me to know whether it's sleep, a deficiency or my thyroid for a while longer :-(

@NickMcKinnis: I don't mean to be mean towards your grandparents, but thinking you're sick because you don't believe in God is just a horrible thing to say to a person :-( Sorry that you had to hear that from them!

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 :-)

I am waiting for you to retire so we can do this.

Lawd knows we have enough talent in this group alone to run one, feed them well and entertain them nightly while we all sip our wine....

we have artists, musicians, cooks, bakers....O mama,

we could make a fortune, meet more wonderful celiacs and live happily ever after.

Don't let this just simple chitchat! :-O It sounds like the perfect place for a vacation! You should establish it in Croatia or italy! I would definitely come to it every year!

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!

it didn't have any photos similar to mine

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 :-)

So yesterday I was eating Glutino's pretzels. Dipping them in Nutella, in fact. My dog was watching me as always, since you know she's totally starved and never gets a thing to eat. So I gave her a pretzel. (these are the thin stick-like ones, not sure if there are other kinds). She took it in her mouth and took it away to her bed to eat.

Later I was walking through the living room and there on her bed was the pretzel, with all the salt licked off. So I put it in her bowl. Later at dinner time it was still there. I put her kibble in her bowl and since we were out of wet food (sigh) I took a bit of peanut butter and stirred it all around so that all the kibble pieces had a bit of pb on them. Including that pretzel.

She ate her dinner and after she was done....there was that darn pretzel on the floor, licked clean of peanut butter! Do you think she is trying to tell me her opinion of gluten free things? rofl... She's never been known to turn down any food, not even carrots and green beans, so this is pretty funny.

That pretzel is now sitting in her bowl again (I forgot to put it there for breakfast) waiting for dinner. I went to the store today so she now has wet food. We'll see if she can separate that pretzel out once again.

I know this is a fluff post and maybe belongs in "food" instead of here in "coping" -- but, I find the story to be funny and I could use a bit of humor lately, with all the end-of-school-year parties and barbeques and church potlucks and baby showers that have occurred recently -- their seemingly endless tables of food, most of which I can't eat.

:wub: my doggie :wub:

This post is totally worth the read lol :-D The dog and the pretzel!

It's hard to say this but even dogs don't like our food options now ;-(

I thought it was very cute anyway :-) Thanks for sharing it.

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.

Ok so I think I need to try cutting off dairy. I know the obvious things that i need to stop eating, like milk, icecream, yogurt, cheese. What else??

Chocolate along with many sweets sadly ;-( Butter also.. can't think of more things. I'm not sure if cookies and baked things containing cow milk are included too though.

My wish is that every single member of this forum, and those who haven't even found us yet, will someday feel as good as you and I do now.

Amen to that :-)

Just out of interest, how is everyone discovering what other foods they are intolerant to?

I've been of gluten but have had no help with doctors at all! I'm concerned I may be intolerant to other foods but feel so overwhelmed and don't know where to begin!

elimination diet + food/ symptom diary :-)

Yes, I have a family that eats gluten.

Yes, I try to avoid it.

But today I cleaned off the counter and sink area. When I looked down at my arms they had a rash from wrist to elbow. It is flat red and not itchy, but it is definate enough for people to see it is there.

This hasn't happened to me before. Now, I want to know does this happen to you all? Is this supersensitive or daily occurence? Does it happen to gluten intolerants commonly, or just if you have Celiac, or what?

I am showing them all the rash; it seems clear that the bread crumbs had been left somewhere.

It's hard to tell. It could be a reaction to something else.. anything more you can describe it by? You should go to the dermatitis herpetiformis forum and read some of the posts there as they contain pictures.

It could be dermatitis herpetiformis and in that case it's a sign of celiac and not just gluten intolerance. Is yours burning at all, and are there any small (watery) blisters showing up? It sometimes takes time for them to show up and after the skin has been dry and burn-ie.

Hello Everyone,

I'm not one for complaining or whining but today has been extremely rough. Today is day 4 of the gluten free diet per doctor's orders. I was doing great and then we (my boyfriend and i) went out to eat. HUGE mistake there. I was so upset. Everything he was eating I use to eat. It looked and smelled so good. I felt awsful as did my boyfriend. I'm just so down and out today....I know God has a plan through all of this...I just really don't know if I can do this....

What that food does to your insides is disgusting .. try to hang on to that thought. It literally shreds off part of your intestines, leaves you starving to death, and that is horrifying. All I can say to you is that the only hard part is the beginning, and one day you won't miss it anymore and it will get become the norm :-) You will learn also how pleasant and amazing gluten free food can be as well.

Best of luck with your new life :-)

Personally I think you should stop caring so much about them and more about yourself. I found out that I'm generally happier and more relaxed when I let go of the need for others to understand and support me. I have hubs who's great, and I don't need anyone who makes life harder or more stressful for me. I'll do what makes me feel well, and others will have to accept it without giving me trouble, because it's how I want to live. They're welcome if they want to be supportive, but I won't sweat over it if they're against anything I do. I think your new chapter should be more about letting go and being "over" their understanding / support. I think you'll be happier if you didn't long for their approval and just live to satisfy your needs Victoria.

That's just what I think anyway.

And congratulations on graduating by the way.

I share your frustration too. I take my own food with me even when I visit friends. It's completely stinky since I'm the type of person who loves sharing food and trying other people's cooking, but I just don't want to bother them with all the demands my diet requires and I don't want to blame anything on them in case I do get sick.

Think about the alternative of all this however. Is this so bad compared to suffering from pain, fatigue, fog, D or C, and your other unpleasant symptoms. I used to walk through the bread isl looking at all the bread and pastries missing them, but now.. I am so pissed at wheat for making me feel bad that I don't want to even look at it anymore. Eventually taking our own food with us will also become something that is second nature to us and our friends/ family.

It'll be ok eventually, and it'll be easier. You'll start knowing your way around your foods not far from now and you won't even feel how you've changed until the next person posts a message complaining about how hard it is to find food :-)

Me likes :-) More tricks wouldn't hurt if anyone has any!

If I have to explain it to them I cannot eat there. Only if they can assure me in their own words (i.e. offer to describe how they handle CC) do I eat there. High-end places train their staff far better than most places. But you are right - there is always a risk. I so rarely eat out other than travel (there are no places safe within a 3-hour radius of here). No, you are not taking CC too seriously. You should! Believe me - I am extremely picky when eating out - my questions can be exhaustive. But I do it anyway and am sure to tip extra!

In Italy they truly get it. In fact, it is mandatory that each child gets tested for celiac by age 6! Many restaurants there have separate stations, designated pots for pasta, they wear gloves... By now many places even remember us (i.e. in Venice) that they automatically bring out an amuse bouche that was created gluten free just for me before even asking. Then they carefully explain yet again what they do for safety. There's one place we go to where they do not even serve bread - just grilled fish, meat and veg. It is a lovely spot and refined and delicious. The grill master is out where you can watch. Not that there is any CC on the grill but still. In Italy they rarely use things like Worcestershire sauce or soy sauce for marinades - it is often simply olive oil, garlic and herbs. Their ingredients and use of them are far different.

Thanks for your input. Did you ever compose a travel 101 thread by the way? If you have I should read it, and if you haven't.. perhaps it wouldn't be a bad idea to make one for us noobs who want to get out :-)

Italy sounds like celiac-haven. I just stated italy as a random example but didn't really expect they would be even safer than sweden!