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Newly Diagnosed, And Not Feeling Better?

teacup

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teacup Newbie
teacup
Posted

Hi there. So, basically, I've just been diagnosed with Celiac's (it was a long four month process) and I still feel like I'm not getting better. I gained weight and have more lesions than I noticed before, not to mention my constant hunger. It just seems like even though my stomach feels better, I have other weird things going on. Weird smells, bad skin, persistent fatigue. Definitely no fun for a high school girl.

I don't really know what I'm asking.

I guess, has anyone else felt like this? Like they were getting worse AFTER their diagnosis, despite doing what you're told to do? :(

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nikky Contributor
nikky
Posted
Hi there. So, basically, I've just been diagnosed with Celiac's (it was a long four month process) and I still feel like I'm not getting better. I gained weight and have more lesions than I noticed before, not to mention my constant hunger. It just seems like even though my stomach feels better, I have other weird things going on. Weird smells, bad skin, persistent fatigue. Definitely no fun for a high school girl.

I don't really know what I'm asking.

I guess, has anyone else felt like this? Like they were getting worse AFTER their diagnosis, despite doing what you're told to do? :(

Welcome to the forum, sorry it took you a long time to get diagnosed but dont worry your not the only one, it took me a year. (It didnt help that i was asymptomatic and my biopsy was clear) :blink:

Not everyone gets better straight away, it depends on the severity of your illness (which is more to do with how long its been active than how bad it is), and weather your truely gluten free or not. What i mean by that is that you could be getting cross contamination or you could be getting hidden gluten from somewhere.

You need to get your own toaster, bread board, untenils, and you need seperate butter and things like that to stop cross-contamination. Also get rid of lip gloss that you were using whilest you were still eating gluten and check the labels on other makeup, shampoo, soaps, sprays and everything that is going to come into contact with your body.Be careful with things that are fried, eg. they could be fried in the same vats as fish in batter. Also you need to watch out for hidden gluten in things like sausages and burgers. If you have a deep fat fryer at home it needs to be completely cleaned out and then only used for gluten free cooking.

Its natural to feel hungry all the time, scince the time your coeliac became active (which isnt nessicarily the same time you started getting sick), your body has been effectivly starved because you havent been getting any nutrients or anything from your food (including fat and sometimes water). Dont worry your hunger levels will sort themselves out soon.

Also you could have other intolerances, many coeliacs are intolerant to lactose and/or soy because the proteins in them are usually broken down by the tips of the villi, so they are difficult to digest. Normally once healing is finished and the villi have grown back we can go back to soy and lactose. Another possibility is deficeincies, you should at least get your magnesium, iron, calcium, Vit B and Vit. D checked amongst others.

I know its tough and the diet is hard core but there are good altenatives out there and after a few months all of this will come naturally to you although at first shoping trips will take about half an hour longer. :lol:

We are all here for you and know what you are going through, also because you are a teen you can join www.celiacteens.com which is a dedicated site for teenagers. Feel free to message me anytime. Good luck.

Lollipop Newbie
Lollipop
Posted

Give it a little time. I know it sucks but hopefully it will go away with time. If you're still having the same problems in a while, you might want to talk to your doctor about having other intolerances.

I know exactly what you mean. I was also diagnosed with another disease (eosinophilic esophagitis), and I'm doing everything the doctors are telling me, but I'm just getting worse. They keep telling me we need to wait longer but its been about a year now! ugh!

anyways, feel free to pm me

becca

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

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    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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      By trents · Posted

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      By Peace lily · Posted

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