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Diagnosis Final Now

answerseeker

By answerseeker
in Coping with Celiac Disease

Recommended Posts

answerseeker Enthusiast
answerseeker
Posted

I went back to the GI today. My GI dr is great and really knows his stuff because his daughter in law has celiac!

I had the rash on my belly I posted about the other day. Doc took one look and he said you have celiac disease.

For those who don't know I was on prednisone during testing and endoscopy so tests were negative but my GI dr still thought I had celiac.

Based on my malabsorption, weight loss, and the rash sealing the deal, I was diagnosed today.

I'm now down to 104lbs and like you all told me already, my doc said its going to take a lot of time to heal. The bruising is vit c deficiency.

His orders:
I need to eat oranges daily
Drink 2-3 bottles of ensure plus a day
Lactose free dairy only
No gluten free processed foods, but homemade with gluten-free flours are ok.
Stop cc'ing myself by making gluten foods in my kitchen. Doc believes I'm getting glutened still

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IrishHeart Veteran
IrishHeart
Posted

I do not mean to sound "know it all-ish" ok. that's not a word, I know... :D .but I am pretty sure we told you this for the last few weeks? and you agreed..

 

Every single thing he said....we already said to you. Just confirms to me that sometimes, fellow celiacs really do more than the docs.

 

This doctor seems to "get it" though, hon..!! yaay!!.. so please, listen to the recommendations.... and big huge ((hugs)) to you! you are going to be okay/

 

and please, try to find a way to stop glutening yourself.  Many people on here live with gluten-eaters and heal just fine.

 

I'm gonna wake up KarenG and Arlene and Addy....and maybe a few more....and have them pipe in here  :D 

answerseeker Enthusiast
answerseeker
Posted
  • Author

I know Irish, and you in particular have been so kind and helpful. I have been in a bit of denial and thinking oh it's just a coinincidence. But now having an official diagnosis I will tighten up the belt. My family is on board with being a gluten free home, my kids can get their snacks still as I don't have to handle those.

 

thanks for all the support, it's really been a tough road. :wub:

1desperateladysaved Proficient
1desperateladysaved
Posted

I am so glad to hear you got diagnosed!  It is hard to be happy you had the rash, but having it may have saved you, or hastened you on your way!  Happy gluten Free eating and recovery to you!  Glad, so glad to hear the family is on board. 

 

D

IrishHeart Veteran
IrishHeart
Posted

I know Irish, and you in particular have been so kind and helpful. I have been in a bit of denial and thinking oh it's just a coinincidence. But now having an official diagnosis I will tighten up the belt. My family is on board with being a gluten free home, my kids can get their snacks still as I don't have to handle those.

 

thanks for all the support, it's really been a tough road. :wub:

 

 

Oh, I know, sweetie...none of this is easy at first, but you are a fighter and you have been working so hard!

 

It is FANTASTIC that your family is on board and sees this disease is no joke.

 

Anything we can do to help, you know we are here for you!

 

You're going to be all right , now...I promise. hang in there ((Hugs)))

Adalaide Mentor
Adalaide
Posted

I'm only out of bed for a few minutes right now. I do live with a wheat eater and can give lots of tips and pointers and will do so at some point tomorrow when I'm allowed out of bed for more than 5 or 10 minutes at a time. Right now I need to get back to bed before my husband gets home and catches me and I get in trouble. :ph34r:

notme Experienced
notme
Posted

I'm only out of bed for a few minutes right now. I do live with a wheat eater and can give lots of tips and pointers and will do so at some point tomorrow when I'm allowed out of bed for more than 5 or 10 minutes at a time. Right now I need to get back to bed before my husband gets home and catches me and I get in trouble. :ph34r:

^^^^^^^^^^^^^^^back to bed, miss!!!   <_< ^^^^^^^^^^^^^^^^^^^^^^^^^^

 

i have a wheat eater but he is tamed :)  (well, as far as keeping gluten from making me sick he is lolz)  

 

first thing:  i cringed at your doctor's advice about eating oranges, to be honest.  i still can't do those - maybe a little at a time - is there a supplement instead or another fruit/veg high in c that you could sub? or maybe that's just me but something to consider when you're journaling <which is a huge help especially living with gluten eaters)

 

i have my own cutting boards, my own drawer where i keep gluten-free wooden spoons, little strainers, etc - basically whatever i use to make our almost gluten free meals every night  - ie:  if i make spaghetti sauce in my stainless steel pot, it's gluten-free.  salad, cut on my gluten-free cutting board, gluten-free, pasta, gluten-free - sometimes i will make him wheat pasta but he has to wait and i can cook it in the same pot but not same strainer/colander.  i get him wheat bread, but he has to keep it over there>>>>>>>>>>>>>>>>> <_< on his own cutting board.  same with croutons >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>  take it away from the salad and keep it to yourself.  if i have a bunch of people over to eat or the kids are home/around, i take mine out first (usually more than i think i need because i can always add it back if i don't serve myself all of it) and then they can crumb the crap out of it and i can relax and eat without worry :)  i am bossy and careful and haven't been glutened since february.  that includes traveling!  so, it will get to be second nature, take heart :)

 

and if you can handle oranges this early, i am truly jealous lolz   :P it's one of the things i used to mistake for glutening until i figured it out.  food journal is your friend!

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answerseeker Enthusiast
answerseeker
Posted
  • Author

He did say the oranges could cause me d but I have so many bruises on me. he said a lot of vit c supplements have gluten.

notme Experienced
notme
Posted

He did say the oranges could cause me d but I have so many bruises on me. he said a lot of vit c supplements have gluten.

ugh - i didn't think of that :(  i just didn't want you to mistake it for D from gluten.  once you start absorbing vitamins again i hope it will come back up to normal - mine are finally good  :)  although still taking vitamin D supplements, but all my others are right where they're supposed to be, even my b <not supplementing, just from eating/absorbing!  (the dumbest things make me happy lolz)

Adalaide Mentor
Adalaide
Posted

Nature Made gummies, the multi ones, are gluten free. They have C in them I'm pretty sure. And they taste good. Don't get the B complex ones, they taste like crap. <_<

 

and omg everyone is yelling at me for being out of bed.... will be back tomorrow for realz with tips :P

IrishHeart Veteran
IrishHeart
Posted

He did say the oranges could cause me d but I have so many bruises on me. he said a lot of vit c supplements have gluten.

 

The oranges will cause you mega- HEARTBURN. 

He's not exactly right about the supplements., There are many that are G F.

I use Country Life--certified G F

NOW brand--no gluten.

Just google it.

Nature Made gummies, the multi ones, are gluten free. They have C in them I'm pretty sure. And they taste good. Don't get the B complex ones, they taste like crap. <_<

 

and omg everyone is yelling at me for being out of bed.... will be back tomorrow for realz with tips :P

 

and now, I am yelling at you for being out bed...GET BACK TO BED BEFORE YOU GET ANOTHER HEADACHE, SILLY PANTS! You just had a major peocedure done (yes, I know you are bored )..don't make me come over there, young lady......xxx

Adalaide Mentor
Adalaide
Posted

bliss-smiley-emoticon.gif  Look at me!!! I'm outta bed!

 

So. I live with a wheat eater. Actually I live with 3 of them which makes things complicated for me but proves that no matter the ineptitude or lack of understanding of other people in the house, living safely with them can be done. One of the people is my husband, he is generally awesome and after these last few days I know I can even trust him to make me food. It was the first time in 1 1/2 years I trusted anyone to cook for me besides eating out. The other two people are his mother and her husband. After all this time I they really don't have any true understanding of what gluten is, or how little it takes to cause CC. They aren't bad people, they just don't get it no matter how many times I explain it.

 

I have a special circumstance because of living with people who simply don't understand the risks, or CC. Due to this I do not share any kitchen stuff. Not my dishes, pots and pans, utensils, appliances, nothing. At first I only bought new pans because every pan in the house was non-stick and crappy, old and damaged at that. I also bought all new utensils since all of the ones in the house were plastic or wooden and most of the plastic ones were pretty seriously heat damaged. I got cutting boards and a few other things and thought I was set. Most people should be. Definitely do not share a can opener, it has too many nooks and crannies to be shared unless it goes through a dishwasher every time your wheat eater uses it. I just use a simple hand one, it isn't a big deal. (I had almost talked my husband into a Gizmo can opener but failed. :()

 

I do have my own microwave because not everything I nuke needs to be covered and no one else ever covers anything. Just eewwww. I got a clearance one for $20 but a better solution? Cover things or keep it clean. The one installed is an over the stove so I can't reach to clean it without a stool and frankly... screw that when it is rarely my mess in it. A cleaning step I would recommend would be emptying your silverware drawer because I found that ours was full of crumbs. Than ban your wheat eater from opening it with unwashed hands and just make sure it is always closed all the way. Ours here have a habit of closing just enough so that crumbs can fall in from the counter. I swear this happens everywhere I live, can people not design a drawer that closes properly?

 

I keep a couple dozen dishcloths in the house. I don't use sponges because they're nasty, dirty, germ-ridden things for one. Secondly, once they are CC'd they're CC'd forever. Waste of money. That is why I simply use dishcloths and do my laundry fairly often. When I need to cook I wash the counter, twice for my own comfort. If your counters are of a porous material you'll want to buy a package of parchment paper sheets to put down also, or simply seal the counters.

 

Anywho, these steps should be enough for someone with a considerate wheat eater in the house. Talk to your wheat eater and set up rules that work for you. There are as many sets of rules as there are houses that are shared by celiacs and wheat eaters. It all depends on what is comfortable for everyone involved and what works for everyone in the house. Some will carve out a tiny gluten free space, some will carve out a tiny gluten space. The rules will probably need to be amended several times over the first few months while you get the hang of things. That is fine. You'll probably get gotten a few times, and probably because of your wheat eater. So here is my most important piece of advice. Never get mad at your wheat eater for it. They didn't do it to you on purpose. It is okay to be mad, but make sure they understand it isn't at them. Then if needed, amend your rules and keep going. The beginning is a learning process for everyone in the house and it'll take time.

notme Experienced
notme
Posted

bliss-smiley-emoticon.gif  Look at me!!! I'm outta bed!

 

 Never get mad at your wheat eater for it. They didn't do it to you on purpose. It is okay to be mad, but make sure they understand it isn't at them. Then if needed, amend your rules and keep going. The beginning is a learning process for everyone in the house and it'll take time.

rotten brat!  lolz

 

but that is a good point - the hubs has 'done me in' more than once, and usually he beats himself up  :(  

 

once, he came home from hunting and he was so excited telling his tales of conquering the wild that he grabbed a piece of italian bread and jammed it right into the giant pot of spaghetti sauce i spent all day cooking.. ..  game over......  he was so miserable about the whole thing *i* was trying to make *him* feel better!   (and he remembered not to do that next time)  he was now a proud owner of 3 or 4 meals worth of marinara and i just ate my rice chex in the corner -  not really but you get what i'm saying lolz  :P

answerseeker Enthusiast
answerseeker
Posted
  • Author

rotten brat! lolz

but that is a good point - the hubs has 'done me in' more than once, and usually he beats himself up :(

once, he came home from hunting and he was so excited telling his tales of conquering the wild that he grabbed a piece of italian bread and jammed it right into the giant pot of spaghetti sauce i spent all day cooking.. .. game over...... he was so miserable about the whole thing *i* was trying to make *him* feel better! (and he remembered not to do that next time) he was now a proud owner of 3 or 4 meals worth of marinara and i just ate my rice chex in the corner - not really but you get what i'm saying lolz :P

Oh my! That's why bread is gone from the house! They still get their hamburger buns though but they stay on their plates and very far from me :-p

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Great you got your answers, I have a feeling you are going to be one of the fighters who gets on with it. I swear it is attitude as well as cracking the food thing that makes a difference to recovery. Which is not to say we won't be here for the odd rant and outburst when the whole thing drives you nuts....

I found any fruit hard at first, while healing, and got terrible gerd. A year in I eat most fruit except citrus, and I avoid juice. gluten-free supplements worked for me. Were your b vits ok? B12 made a difference for me, even though I was in range.

I have a mixed kitchen, and work in similar ways to Addy. All my stuff including my toaster is purple. I thought I was getting cc or was super sensitive, but it turned out I have multiple other intolerances. Good clean simple foods gave me my life back.

Welcome to the club you never knew you wanted to join :)

answerseeker Enthusiast
answerseeker
Posted
  • Author

Great you got your answers, I have a feeling you are going to be one of the fighters who gets on with it. I swear it is attitude as well as cracking the food thing that makes a difference to recovery. Which is not to say we won't be here for the odd rant and outburst when the whole thing drives you nuts....

I found any fruit hard at first, while healing, and got terrible gerd. A year in I eat most fruit except citrus, and I avoid juice. gluten-free supplements worked for me. Were your b vits ok? B12 made a difference for me, even though I was in range.

I have a mixed kitchen, and work in similar ways to Addy. All my stuff including my toaster is purple. I thought I was getting cc or was super sensitive, but it turned out I have multiple other intolerances. Good clean simple foods gave me my life back.

Welcome to the club you never knew you wanted to join :)

Thanks! Yes I'm a fighter. 2 years of being ill and no answers. My asthma took a year to get diagnosed with my old (note not my doc anymore lol) gp just kept giving me antibiotics because he said I had upper respiratory infection. Finally after 4 rounds he referred me to a pulmonary specialist duh

My b12 was 482. The lab only lists the range as over 200 being normal but I've read that 482 is on the lower side.

Haha yeah club I never wanted to be a part of. But I'm glad to be a part of this one with supportive people!

My dr said I was doing really well for someone just diagnosed but he's pretty certain I'm still getting hit hence the breakout of dh. But that dh is what sealed my diagnosis so blessing in disguise on that one :-)

IrishHeart Veteran
IrishHeart
Posted

 

 

once, he came home from hunting and he was so excited telling his tales of conquering the wild that he grabbed a piece of italian bread and jammed it right into the giant pot of spaghetti sauce i spent all day cooking.. ..  game over......

 

 

I can't believe he was not banished to the outhouse for that one!! or at least one of these: 

slapping.gif

IrishHeart Veteran
IrishHeart
Posted

Thanks! Yes I'm a fighter. 2 years of being ill and no answers. My asthma took a year to get diagnosed with my old (note not my doc anymore lol) gp just kept giving me antibiotics because he said I had upper respiratory infection. Finally after 4 rounds he referred me to a pulmonary specialist duh

My b12 was 482. The lab only lists the range as over 200 being normal but I've read that 482 is on the lower side.

Haha yeah club I never wanted to be a part of. But I'm glad to be a part of this one with supportive people!

My dr said I was doing really well for someone just diagnosed but he's pretty certain I'm still getting hit hence the breakout of dh. But that dh is what sealed my diagnosis so blessing in disguise on that one :-)

 

But, DH lesions can be active for two years after DX because of inflammation and not necessarily because you are "getting hit".

Lock Newbie
Lock
Posted

Well, I WAS going to recommend "Buried Treasure" liquid vitamin C but I cannot confirm that it is certified gluten free. I used that a few months ago and I loved it. It tastes like orange juice (you just mix a spoonful into water) but without all the sugar, and it did not upset my stomach like whole fruit does.

 

Right now I need to get a lot of good vitamins and I want to order more but their website is hard for me to understand for some reason.

 

Another thing I liked about the liquid C was that it was complexed, not just ascorbic acid like a lot of C products.

answerseeker Enthusiast
answerseeker
Posted
  • Author

I bought ester c which is gluten free and it says it is gentle on the stomach. We will see how it goes.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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