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

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

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    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

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      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
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.