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

Introduction

Odysseus

By Odysseus
in Coping with Celiac Disease

Recommended Posts

Odysseus Newbie
Odysseus
Posted

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Welcome and congratulations for saving your own life! I wish I had figured it out at 40 like you did! Having said that, the first mistakes I made were eating in restaurants and thinking I could order "gluten free." I couldn't. Kissing someone who has eaten Gluten WILL make you sick, it's sad, but true. Lipstick either has wheat germ oil or CC issues and can make you sick unless you specifically buy gluten free. Change your toothbrush...now and frequently. Check medicines and vitamins. Soy sauce is "wheat sauce" unless you buy gluten free. There is a mainstream brand that is not gluten/wheat, but I don't remember the name. Read all labels. If you hand a cookie to a child, wash your hands. Hand sanitizer will do nothing to gluten except make sure that the gluten you eat is very clean, but it will still make you sick. Breathing flour in can make you sick because it hits the mucous membranes and makes it's way to your stomach. These are a few of my favorite mistakes. Glad you are feeling better. It sounds like you are off to a good start! Oh, and Udi's bread is pretty good. I didn't buy any other after reading all the reviews. :)

krystynycole Contributor
krystynycole
Posted

welcome! I as well am self diagnosed, which can be hard because there is no doctor to help you out through the process in any way. However you've found the right place, I've learned so much just from reading other peoples questions and responses.

First, I'd advise starting to eat just naturally gluten free food. It's the best way to stay positive about your new diet. Stick to the outside of your grocery store eating fresh fruit, veggies, and meats. Then slowly add in other "adapted" gluten-free foods.

Second...check out different food blogs (many on this site) for meal ideas. Also, I enjoy many recipes at www.bettycrocker.com. They make gluten-free bisquick and have a lot of recipe ideas that my non gluten-free husband even raves about!

sa1937 Community Regular
sa1937
Posted

Welcome, Odysseys! In addition to what others have said, there are some books that you might find helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free by Jules Shepard

And if you shop the outer rim of the store (foregoing processed foods), it's much easier and better in the beginning. Pretty soon we get really good at label reading and can spot ingredients at a glance that we need to avoid. My first shopping trip was a nightware and took forever. After awhile It becomes almost automatic to know what we can and cannot have. (We still have to read labels though as ingredients can change in a heartbeat.

And keep reading this forum as I got so much good info as I was in the learning process. Plus check out the Gluten-Free Recipes section and post any questions you may have.

BaldurBen Newbie
BaldurBen
Posted

Congrats on what sounds like correct self-diagnosis! Eating naturally gluten-free foods such as fruits and veggies is good advice. Read all labels and get familiar with the Safe and Unsafe lists on this site. When starting out, I was surprised to learn that mustard, soy sauce, and black liqorice for example can contain gluten.

One of my favorite ways to start the morning is to make a smoothie from rice milk, fresh fruit juice, frozen blueberries and strawberries, plus one scoop of Thorne MediClear protein powder. Toasted Udi's gluten-free bagels plus fresh cream cheese is another favorite.

Picazzo's is my favorite gluten-free pizza place, and whatever I can't get at my local supermarket I get from Whole Foods or Sprouts. Glutino and Udi's are two of my favorite gluten-free food labels. Also, you can get a lot of recipes, articles, and other good advice by following gluten-free people on Twitter. Finally, if you drink, even in moderation, you might consider giving up alcohol altogether. I never have as much energy as when I do my annual three-week detox course, which excludes alcohol.

Good luck!

Loey Rising Star
Loey
Posted

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

Welcome to our wonderful group. I joined in October 2010 and I have to say I have never met a more supportive, intelligent and kind group of people anywhere in my life. I don't know what I'd do without this forum. I'm copy and pasting two links you might find useful. Remember, regardless of what a package says ALWAYS check the ingredients!!! I hope these help.

Loey

Open Original Shared Link

Open Original Shared Link

Odysseus Newbie
Odysseus
Posted
  • Author

Thanks again everyone for all the encouraging words and good ideas. I never would have thought of about breathing in flour or touching cookies or lipstick. Yesterday my daughters and I took my wife out for her birthday to eat at Red Lobster. Wasnt sure what I would be able to eat. I asked the staff if they had a gluten free menu and to there credit they gave me an allergen menu that showed what contained gluten and what might be cross contaminated. There were a few things on there but I read wrong and ended up with something that was cc. I picked wood grilled fresh fish with broccoli and mashed potatoes. Along with a cesar salad. Oh well, I am on the learning curve. Afterwards we stopped by the store and found some gluten free items. We bought King Arthur and Gluten free pantery flour. Some cookies, bisquick and Betty Crocker chocolate cake which was really good. Also thanks for the books ideas and the links. I will def. check them out. One last thing...where does everyone get the udi's bread. Online order???

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Odysseus Newbie
Odysseus
Posted
  • Author

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Thanks for the info. I have never heard of a earth fare so I'll have to google that. Yeah, it does tastes so much better when it doesn't hurt. I always thought "thats just the way it is". Not anymore.

eatmeat4good Enthusiast
eatmeat4good
Posted

Most health food stores carry Udi's I think.

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. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @cristiana Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to ...
    2. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      1

      Mallorca Guide

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...
    3. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
    4. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety. I had awful anxiety at diagnosis, and that feeling of doom that you describe. My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me. I then got a phobia...
    5. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @trents thanks so much for the insights this helps alot. These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,938
    • Most Online (within 30 mins)
      7,748
    K2coffee
    Newest Member
    K2coffee
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
    • trents
      Insomnia help

      By trents · Posted

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 
    • cristiana
      Insomnia help

      By cristiana · Posted

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @trents thanks so much for the insights this helps alot.    These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 
×
×
  • 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.