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Newly Diagnosed; Still Struggling!

ashylu929

By ashylu929
in Coping with Celiac Disease

Recommended Posts

ShayFL Enthusiast
ShayFL
Posted

People come in here for advice. And in so doing, you will get a variety of responses. Each individual has to decide for themselves how to keep safe.

It may be that as long as you dont eat gluten and avoid anything that goes on your mouth that contains gluten, you will be fine. But if you find yourself eliminating those things, but you still are still sick, then you might be more inclined to consider some of the things mentioned in here that might at this moment seem "extreme".

None of us old-timers are trying to be "extreme". We are just here day in and day out listening to people who are an absolute mess because they think they are gluten-free, and are still sick. When making a few of the changes we have mentioned has made a BIG difference for some people. We just try to help newbies avoid these very things we see cause problems for people over and over again.

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ksymonds84 Enthusiast
ksymonds84
Posted
Thank you! I too think we need to be realistic & do what we can. I have 2 dogs, a cat and a turtle--all of which i wash my hands after being in contact with them, their toys or their food. I appreciate the advice about the toasdter as i just cannot afford a separate one right now as well as the info about teflon pans---what about glass/bare metal pans?

thanks,

alicia

I don't worry about the glass and bare metal pans because you can clean them easy with hot soapy water or the dishwasher. I only worry about pans that are scratched up or coranders that have tiny holes. Gluten is very sticky! There are toaster sleeves available on line if you google them. I've seen a 2 pack for 4.00. They are reusable and you don't have to get a new toaster.

cjsmommy Newbie
cjsmommy
Posted

:huh: I too am newly dx/ Neg blood test; Positive biopsy. My small bowel and liver are damaged. The last three years I have being treated for RA,SLE, vasculitus, and the list goes on.......I have still remained "sick". I have not been able to get rid of the constant vomiting or feeling like I am going to; and I can't get rid of my migranes for very long spells of time. I had a very, VERY difficult pregnancy, was on TPN much of the 36 weeks ( have a healthy & growing 3 year old now; but by the grace of God :) ) While this seems to be an easier thing to treat than SLE & RA; it is OVERWHELMING!

Everything is having to change....nothing from what I put on my face, in my hair, or down my throat seems safe anymore........I am trying to change as many things as we can, but still learning, and for sure so confused and maybe even a little mad......but I will see what happens.....I have handled a lot of other things the past few years, and am so sick of always being sick...tired of taking enough meds. to choke a horse;maybe this is finally the answer.

Trachellium Newbie
Trachellium
Posted

Hi there- total newbie, thought I would jump on with you all because this seems most relevant to what my situation is. Just got diagnosed with Celiac (today actually) via blood test. I too don't really have any of the digestive problems, my digestion seems just fine, maybe some gas and bloating here and there but nothing too uncomfortable. My worst complaint is the brain fog, absolutely debilitating, work is suffering, personal relationships, etc. Also, everything I come across says there is weight LOSS that comes with the malabsorption, but I have gained weight, could this be due to the body continuing to be hungry because of the lack of nutrients? I guess I am just a little confused because my symptoms don't really fall in line with the ones that are listed on the major websites. I have been struggling with this beast for about 3 years now and am excited at the possibility of finally having cracked it but I also don't want to get my hopes up. Thanks in advance for any insight and support.

mushroom Proficient
mushroom
Posted
Also, everything I come across says there is weight LOSS that comes with the malabsorption, but I have gained weight, could this be due to the body continuing to be hungry because of the lack of nutrients?

There is no particular set of symptoms that fits everyone. They are many and varied and come in all different combinations. Weight loss was always thought typical but many of us gained weight whilst eating much less than others around us. I know, I was one of them. A year gluten free and I have now lost 44 lbs and continuing to lose, so there is hope.

I think that it is this wide variety of symptoms that has left so many of us undiagnosed for so long.

ang1e0251 Contributor
ang1e0251
Posted

I was one of those who has gained much weight with no seeming logic. Now I know. I minimized my digestive problems as normal for one who's gallbladder had been removed. I was clueless. Once I went gluten-free, it was amazing the change. Not just digestive but neurological and mental. I'm telling you, you are in for a great revelation on how life can really be. Pain in the butt diet? So what...I would have paid any amount of money for a treament to feel as healthy and normal as I feel now. The great thing is I don't have to! I don't need Chemo or narcotics or physical therapy; I only need to eat properly! I'm grateful, blessed and any other great like adjective you'd like to coin. Mental heel click!

aliciatakescare Newbie
aliciatakescare
Posted

I will take all the encouragement, support and advice I can get. I will do whatever it takes to not feel totally ill and like it is all in my head again. I'm delighted I found this forum as you have all been very good to me :)

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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