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

I'm New

smead78

By smead78
in Coping with Celiac Disease

Recommended Posts

smead78 Newbie
smead78
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Welcome! You've come to the right place to get your questions answered. A lot of us have been given very little guidance by our doctors so what you experienced is pretty normal. You might want to read, read and read the posts on this forum as a lot of people have been or are in the same boat.

There are a few books that I can think of off hand that are very helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)

Hope this helps a bit (I'm still on my first cup of coffee) :)

Mummyto3 Contributor
Mummyto3
Posted

Welcome to the site. I'm new too. My 9yr old daughter was diagnosed 2 weekds ago through a blood test. She's due a biopsy but I'm struggling to get a hold of her dr at the other hospital. We've already had a dieticians appointment come through for us next week (which I'm told could also be biopsy day!). I was tested for celiac disease last Friday as well as hubby. Bowel probs run through my family, grandmother, uncle, aunt, cousin. Three out of them died due to problems. I don't know if any were diagnosed with celiac disease but some seem very much like it.

I've read tonnes on the subject of celiac disease so feel pretty clued up. Heartless of your dr to give you news then walk out! So sorry he/she did that to you. I know this is all pretty scary. It's taken me these 2 weeks to get my head round my daughters diagnosis. Pretty sure mine will be positive too :o(

WinterSong Community Regular
WinterSong
Posted

Welcome to the board and to the road to feeling better!

A lot of doctors are like that actually. I have a great doctor, but I still learned everything on my own (I read probably 7 or 8 books). By the time I went in for my biopsy, he said that I didn't need to see a nutritionist because I already knew everything. :lol:

Just take a breath and start at square one. Read a book or two, and any questions you may have, I'm sure a lot of people on this forum are more than willing to help. There's also a great topic called "You're Top Two Pieces of Advice" on here that you should read.

Remember it will get easier and less overwhelming. And you're not alone because this entire online community will be rooting for you. :D

smead78 Newbie
smead78
Posted
  • Author

Thank you everyone for your help and words of encouragement. Waiting for my first visit with the nutrionist

angel9165 Newbie
angel9165
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

That's pretty much how it went for me as well. It's been almost a year and I definitely feel better about it now. I have actually taught my GP a few things (and I certainly don't expect her to be a celiac expert, heck...my GI doc isn't) and we seem to be getting it all figured out. I told her how I had researched the affects on your thyroid so we tested me again (sooner than needed) and found we get to lower my dosage. Will see her next month for another test to see if we can lower it some more...with any luck, it's one medicine I can stop taking. She's been great but nothing has kept me more informed than this site and researching the net.

Good luck, Smead! :)

notme Experienced
notme
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

hi and welcome :) you are in the right place. go ahead and list specific questions and the people on here can help you! been there and done that (learned everything on my own with the help of these awesome folks) one nurse at my gi's office actually told me to go online ("just google it") i think she was clueless. the best advice has come from here :) also, it's a great place to vent if you need to!

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

oh, and: ps - by the time i could get an appointment to see a dietician/nutritionist, i didn't need to because i had already gotten coping and nutrition tips and skills from this forum. ka-ching! that's 50 bucks in my pocket! <co-pay $ ;)

cahill Collaborator
cahill
Posted

Hi , Welcome :)

Read and ask questions,, we were all newbies once :P

Korwyn Explorer
Korwyn
Posted

There are a few books that I can think of off hand that are very helpful:Celiac Disease: A Hidden Epidemic by Dr. Peter GreenLiving Gluten-Free for Dummies by Danna KornThe First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)Hope this helps a bit (I'm still on my first cup of coffee)

Yay for Sylvia's suggestions! :) Living Gluten Free for Dummies saved my sanity. A friend whose husband has celiac disease loaned it to me. I highly recommend all three of those.

My recommended order for reading these would be:

  • Living gluten-free for Dummies
  • The First Year: Celiac Disease
  • celiac disease: A Hidden Epidemic
Harpgirl Explorer
Harpgirl
Posted

I second (or third?) the Dummies book! I'm reading it right now and it's really helping me to understand how to deal with this (when I'm not at my computer), and not panic about it. I'm looking forward to reading the others too. :)

I also understand that Dangerous Grains is suppose to be good too.

mamabear272 Explorer
mamabear272
Posted

As if you need any more testimony about the Dummies book, I HIGHLY recommend it too! I'm still working on it but I've learned sooo much from it. I kept reading the same information online but it didn't make sense to me as far as what gluten does to us that makes us sick. When I read Dummies, it all clicked!

I was actually in the hospital with diverticulitis when I got the call that I had tested + for celiac (I had just seen the GI doc before the diverticulitis flare up) so I haven't seen the GI doc yet for a follow up. I see her next week for a follow up and hope she'll have some info for me. I'm not too worried about it though because I've read so much on it and being here is so very helpful.

I saw my family doc yesterday and he kind of smoothed over the celiac but like I said it doesn't worry me too much because really I probably know more than he does about it. My suggestion is just keep coming here and read anything you can get your hands on about it! We'll all be fine!

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. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.