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

Help - I'm New

Guest RachelLawson

By Guest RachelLawson
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest RachelLawson
Guest RachelLawson
Posted

Hi. I was diagnosed as celiac disease last Wednesday and have been gluten-free since, but it's so hard!

Here in the UK it's quite difficult to interpret some of the labels to know which foods I can eat and which I can't. I'm still waiting for all the info from the Coeliac Society to come through, so I feel like I'm on my own until then.

Also, I'm worried about the cross-contamination thing - if my daughter spills cheerios on the sofa, then I touch the area they were spilled later on in the day (well after they've been cleared up) am I still at risk from ingesting gluten? How careful do I need to be?

And the final thing is (sorry!) that I feel absolutely DREADFUL. I've been ill for a year now so I'm keen to get to the bottom of my illness, but since going gluten-free I feel worse. It's only day 5, but I'm exhausted, my head hurts, I feel like crying all the time, my eyesight is a bit migrainey in one eye on/off, and my muscles ache. I feel shattered and depressed. I've read the postings on gluten withdrawal and can't decide whether this is me, or whether I'm just never going to get any better.

Also, (this really is the last thing) I don't know whether I should get my daughter tested - she's only 4 and she seems OK - plenty of energy etc. Is she too young or am I putting her at risk if I don't get her tested? I don't want her to have to go through an endoscopy.

I don't know where to start or where to turn.

Grateful for any input,

Rachel.

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Your daughter should be tested. However, have the complete celiac panel of blood tests run first. She may not even need a biopsy.

You need to be careful about cross contamination...after you pick up cheerios where she spilled then wash your hands.

The diet will help with your symptoms but give it time because it will not happen overnight. Some people's symptoms go away quicker then others.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Rachel!

Welcome to the board! I know right now you are feeling overwhelmed and you are probably at the point where you feel like you will never feel good again and you don't see a light at the end of the tunnel. Please trust us when we say things will change for you. There are a bunch of really great, supportive and helpful, knowledgeable people on this forum who are always willing to help in any way they can. This forum is a wealth of valuable information for celiacs and any questions you have, just feel free to fire away!

As for the feeling of never getting better, remember it took years for gluten to poison your system to get it to this point, and it won't turn around overnight. Some people do have a speedy positive response to the gluten free diet, others take weeks or months, sometimes over a year. It all depends on the amount of damage done to your system, and also how vigilant you are with the gluten free diet. There are some people who post here who basically have said they were on death's door before a diagnosis was found and they have found their way back to a healthy life.

I know you will feel comfortable here. All of us here have been at the beginning of this road and know how overwhelming it is......

Welcome!

Karen

Misa Rookie
Misa
Posted

Hiya Rachel

I'm pretty new too (it's week 7 now I think). Just wanted to say the label thing does get easier. This website has ok and forbidden food lists: https://www.celiac.com/st_main.html?p_catid...-52105426433.be I did print-outs and take them with me when grocery shopping.

I also felt ill both mentally and physically during the first few weeks. Worse than before gluten-free which I didn't think was possible. But suddenly things lifted. Hang in there, it does get better.....

Take care, Misa :)

Guest RachelLawson
Guest RachelLawson
Posted

Thanks, everyone - I think I'm just panicking a bit.

Kaiti - I'll look into getting my daughter tested. Unfortunately in the UK doctors only seem to run a single blood test - mine was tissue transglutaminase. You don't get a panel of bloods done here, but I might see what they say if I push it. They also won't give you a diagnosis of Coeliac Disease unless you've had positive biopsies. God bless the NHS. I'll definitely be more careful with the cheerios!

Karen - thank you so much for your messages of support - they've really helped me to feel happier about my situation. I'll bear everything you've said in mind.

Misa - I'm glad it's not just me who feels dreadful on starting the gluten-free diet. I didn't imagine that I'd feel worse than I have been feeling - that was a shock.

In my desperation (had a really bad day today with dizziness and fatigue) I've posted another cry for help on this board and now feel guilty that I didn't check here first - really sorry everyone. Brain fog.

Be in touch,

Rachel.

FaithInScienceToo Contributor
FaithInScienceToo
Posted
In my desperation (had a really bad day today with dizziness and fatigue) I've posted another cry for help on this board and now feel guilty that I didn't check here first - really sorry everyone. Brain fog.

Be in touch,

Rachel.

<{POST_SNAPBACK}>

NO PROBLEM!

No need to apologize...

There are many of us on here who don't always get the time to read all new threads...so, you'll catch different people with each one...

About it taking time to recover...it can take a number of years for all gluten to leave your system...and, I have read that gluten is linked to brain plaques...I can't imagine that they go away completely with a gluten-free diet...but, if they do, it probably also takes time...

...so...brain fog may we one of the last things to lift...

It seems to be the case with me...

Keep reading the threads on here and posting whenver you need to...

LIFE IS GOOD! :-)

Gina

tarnalberry Community Regular
tarnalberry
Posted
Also, I'm worried about the cross-contamination thing - if my daughter spills cheerios on the sofa, then I touch the area they were spilled later on in the day (well after they've been cleared up) am I still at risk from ingesting gluten? How careful do I need to be?

And the final thing is (sorry!) that I feel absolutely DREADFUL. I've been ill for a year now so I'm keen to get to the bottom of my illness, ...

Also, (this really is the last thing) I don't know whether I should get my daughter tested - she's only 4 and she seems OK - plenty of energy etc. Is she too young or am I putting her at risk if I don't get her tested?

<{POST_SNAPBACK}>

Welcome to the board!

The spills/cross-contamination. Yeah, you have to be concerned, but it does get easier. If she spills cherrios on the sofa (and it's a fabric sofa) and you have any reason to believe that there could be crumbs left behind, then yes, you need to not touch the crumbs and then touch your hands to your mouth. But vaccuming up the crumbs after the spill may be sufficient to deal with that.

Are you eating well enough to keep you feeling decently? When we first learn about all the things we can't have, it can be hard to keep eating enough, and well-balanced items to keep us feeling as well as we can. Make sure to get enough protein/fat, and not just replace your regular gluten-based foods with the highly refined carbs that are found in many of the substitutes.

As for your daughter - ditto on the idea of getting her the full panel of blood tests and wait to see the results to determine whether or not you want to do a biopsy. If damage is taking place (and not everyone shows the same level of symptoms), then you don't want to just wait, but there's no need to throw everything at her right away.

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

Celiac.com Sponsor (A8-M):


Corrine Rookie
Corrine
Posted

Hi Rachal,

My daughter was diagnosed in 2001 and it took her 2 years to get better. She was extremely sick and on death's door. One thing that I learned was to change my cooking utensils as they can cross contaminate. I got rid of all my plastic stuff as I figured I could get steel and glass clean. Any fry pans that had that nonstick coating on went as I didn't think I could scrub that clean. I completly stopped all baking with real flour as the dust was enough to make her sick. Also my doctor ordered allergy testing for her and that was great as she has a host of food allergies which we weren't aware of.

I'm from Canada and know how your medical system works in the UK. See if your doctor would be willing to send your daughter to a pediatrian who may know more about celiac disease in kids. I know its like pulling teeth to get a doctor to go with a suggestion but it doesn't hurt to ask.

As was said already that you didn't get sick overnight so it will take awhile to feel better. I found this board late in my daughter's diagnosis. I was out in left field as there isn't a support group here and I knew more than the dietian. There was a lot of groping in the dark. Keeping coming here as you'll learn alot.

Hope your feeling better both physically and mentally.

Archived

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

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


  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748
    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.