Jump to content
  • 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

Advice...please


tor101

Recommended Posts

tor101 Newbie

I need advice - I was diagnosed about a month ago and I have been doing okay with everything. I understand about what and why I need to eat gluten free and cross contamination but....I'm failing. 

 

I still am getting symptoms often even though I am trying to eat all fresh foods and took my own food with me on a weekend trip. 

 

This week has been the worst - Im not able to go to work bc my head is pounding, I'm running to the bathroom for both ends (sorry) and I am just so tired. I cannot keep anything down not even water. I have a doctors appointment this afternoon but I dont even know what they are going to do....

 

I'm so frustrated - physically and emotionally exhausted and just dont even know what to do anymore. 

 

Can I even take something for my headache...everything that I have looked at says they are gluten free but the packaging may not be....I have been out of work so much the past two months I dont know how much longer my office is going to be okay with me taking sick time - though working in the medical field with nurses i think is helping a little bit....

 

okay done rambling...any advice would be helpful, I just feel so lost! thank you!! 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I'm not understanding what this means " the packaging may not be" gluten-free? If the ibuprofen or acetomenphin says its gluten-free, then it is. Take something for the headache! Hard to think with a headache.

cyclinglady Grand Master

You are not failing! Going gluten free has a steep learning curve. On top of that, healing takes lots of time. I did not feel any improvement (even the slightest) until I was six weeks into the diet. Learning curve? Easy for me since my husband has been gluten free for 13 years!

I did not start to feel normal until six months into the diet and another few months to really feel good (had a few fractures to recover from that's occurred three months after my dx).

So, do as Karen suggested and treat your headache. That is one thing you can do to feel better. Give yourself some time and keep reviewing labels and cross contamination practices. It is always good to keep on top of those practices -- even for us oldies!

BTW -- suggest you give up all dairy until your intestinal villi heals.

skullgrl Rookie

Please read all the newbie threads about cross contamination as well! It can take quite a while for things to start getting better but if you do a lot of research and make sure to avoid things like cross contamination it can make the transition phase a lot easier.

notme Experienced

https://www.celiac.com/forums/topic/91878-newbie-info-101/ 

 

yes, take an ibuprofen!  if it says 'gluten free' on the package, it's safe to eat.  and settle down - we all went through this panic :unsure:  read the above link.  it should help you navigate better as far as what is safe and what to beware of.  you can eat more things than you think :)  it takes a little practice but after awhile it will become second nature.  keep a food journal - everything you put into your mouth - and record your reactions.  if your gut is damaged, eat more bland foods until heal up some.  some things will bother you even if they are gluten-free just because your intestines are inflamed.  skip that stuff for now, and maybe dairy for a little while.  i think i skipped it for about 6 months, then i could add it back in.  

 

fyi - my gluten reaction is delayed 48 hours, then it lasts for 12 more days...  everybody is different, but you could be reacting to something you ate 2 days ago.  that's where the food journal is very handy.  welcome and good luck :)  

tor101 Newbie

Thanks everyone - your advice has been very helpful. 

 

Pretty much what the doc told me this afternoon - take a tylenol, get fluids and rest....which is what time doing.

 

I know its not an overnight process and that it will take sometime....i just, want to feel better ha ha ha! 

tor101 Newbie

I'm going on day 4 and while the brain fog and fatigue has lifted I still cannot keep anything down and have bad D. I dont know what to do at this point. I called my GI yesterday and he said I need to be on liquids and a BRAT diet....I just dont know what to do - i felt pretty good yesterday evening then I went to bed and its like back to square one in the morning....


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

It's possible you just have a virus.  There is a nasty one going around that causes similar GI issues.  Try the BRAT diet, see if things calm down in a few days, keep drinking water and nothing else and if you don't see an improvement in a couple days, maybe go to your primary dr and see what else could be causing this.

nvsmom Community Regular

Hang in there.  The first few months are tough because symptoms are coming and going still. If it is a virus, that will make everything worse, and I was hit MUCH harder by viruses when I was undiagnosed - I hardly ever get sick anymore.

 

L-glutamine can help with intestinal healing. It might be a supplement to consider using for a few months.

 

Hope you feel better soon.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,862
    • Most Online (within 30 mins)
      7,748

    ZoesDad
    Newest Member
    ZoesDad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.