Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed, And Not Feeling Better?

teacup

By teacup
in Meet Up Room

Recommended Posts

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? :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,743
    • Most Online (within 30 mins)
      7,748
    Abbie Radtka
    Newest Member
    Abbie Radtka
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Sandi20
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Sandi20 · Posted

      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Prior to being diagnosed, I had a gluten heavy diet. I stopped all gluten exactly a week ago and have continued to feel sick in the ways I did prior to going gluten free - primarily on and off nausea, brain fog, and fatigue. Wondering if this is normal and, if so, how long can I expect to feel this way?
    • Scott Adams
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Scott Adams · Posted

      Some of the largest contract manufacturers in the U.S. include companies like NutraScience Labs, Capsugel (part of Lonza), and Thorne Research. These companies produce supplements for a wide range of brands, from small startups to well-known names.
    • Sandi20
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Sandi20 · Posted

      Thank you for your feed back and knowledge.  Scott do you know the names of the BIG manufactures who produce most supplements?  Love to research them all and decide on their principles and manufacturing certifications who I want to spend my dollars with if they provide other non private label supplements that are good. 
×
×
  • Create New...