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

New Here And Fairly New Diagnosis

Nobodyzdarlin1

Recommended Posts

Nobodyzdarlin1 Newbie
Nobodyzdarlin1
Posted

hi!

My name is Jill. I'm new here and I had a few questions. I was diagnosed about a year ago. I tried the gluten free diet but gave up. Since then my symptoms have gotten increasingly worse. I was sick for many years before finally getting a proper diagnosis, and it was a surgeon who finally did. He sent me to a dietician and that was it. It wasn't until I started reading The "Gluten-Free Bible" that i realized there is more to it than just a gluten-free diet. I was never told that i should take a multi vitamin because of malabsorption, but it wouldn't matter anyway really, because i wouldn't absorb that anyway, they pass right through me. So i guess some of my questions are:

What multi vitamins do you guys suggest? which ones seem to digest the best?

Do your doctors suggest that you have bone density tests? every year? I have never had one. I am 31 years old by the way.

Do you guys suggest any books on celiac or gluten-free cookbooks? anything like that?

Do you know of any chain restaurants that have gluten-free menus? i heard that applebee's did, but the ones in my town do not.

any other info you guys could pass on that might help would be much appreciated.

thanks alot

Jill

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi Jill! Welcome to the forum, I am glad you found us!

First off, you are lucky to have had a doctor who actually clued into what was wrong with you and gave you the proper diagnosis. There are many on this forum who still have not gotten "officially" diagnosed, but unofficially have had such positive responses to the gluten free diet that they know in their hearts gluten is the culprit. The average time from onset of symptoms to actual diagnosis is 11 years! Some here have gone even longer and were "on death's door"(their words) before they finally found out what was wrong.

Did you give up the diet initially because of lack of positive results? Or was the diet just too hard? There's lots of reasons to fall back into the old diet if you haven't seen the amazing results that you were expecting.

There is so much that I have learned from this forum, it's amazing. I didn't know I needed my own toaster (one crumb from a regular wheat slice of bread and make me ill) and here I was sharing a toaster with my whole family. Same goes for utensils, pots, pans. You need your own gluten free condiments, double dipping cross contaminates jars of condiments, peanut butter, etc. You need to check your shampoos, lotions, make-up, vitamins, supplements, over the counter medications, basically anything that comes EVEN CLOSE to your mouth!! I made the mistake of thinking that Gas-X Chewable Tablets were gluten free and I was eating those things like candy. Turns out they contained gluten! (The softgels are okay for us.)

One thing that I found as absolutely essential when shopping is the delphi list. It is a list that is updated on a regular basis, broken down into convenient categories, which makes it alot easier for shopping. You go to www.delphiforums.com, click on the left hand side "Health & Wellness". Then you click on the second forum down "The Celiac Disease Support Group". (You will have to register and log in, but it is free). Once you are in there, scroll down to where you see "Gluten Free Products List", and click on that. The list comes up all categorized for you. It is a godsend. Also, looking through the list, you will be absolutely amazed at all the mainstream stuff that is perfectly fine for us! There is also a section where you can go in and download the whole list to print off.

You will find this site has alot of people with vast knowledge of this disease and are always there for support. Any questions, ask away! We've all been there......

Welcome!

Karen

hez Enthusiast
hez
Posted

According to my gi the longer you damage your vili by eating gluten the longer it will take to heal. I do not know about others on the board but it seemed true for me. I was dx in April 2005 (went gluten-free right away) and did not start feeling better intil September 2005. Once you do start to feel better it helps. It is horrible to feel bad and not be able to have what you are used too. I would start slowing. First, just eat naturally gluten-free food like vegies, fruits, and meats. Then start looking at cosmetics and shampoos. I did buy a new toaster and new non-stick pans (they were scratched). Other than that I gave everything a good washing. I threw out the gluten food in my cabinet and started with new condiments. I highly recommend looking at old posts and using the delphi list (the one Karen gave you) to figure out what food is gluten-free. I was amazed at how much in my diet was gluten-free!

Welcome to the board :)

Hez

wilbragirl Apprentice
wilbragirl
Posted
Hi Jill! Welcome to the forum, I am glad you found us!

First off, you are lucky to have had a doctor who actually clued into what was wrong with you and gave you the proper diagnosis. There are many on this forum who still have not gotten "officially" diagnosed, but unofficially have had such positive responses to the gluten free diet that they know in their hearts gluten is the culprit. The average time from onset of symptoms to actual diagnosis is 11 years! Some here have gone even longer and were "on death's door"(their words) before they finally found out what was wrong.

Did you give up the diet initially because of lack of positive results? Or was the diet just too hard? There's lots of reasons to fall back into the old diet if you haven't seen the amazing results that you were expecting.

There is so much that I have learned from this forum, it's amazing. I didn't know I needed my own toaster (one crumb from a regular wheat slice of bread and make me ill) and here I was sharing a toaster with my whole family. Same goes for utensils, pots, pans. You need your own gluten free condiments, double dipping cross contaminates jars of condiments, peanut butter, etc. You need to check your shampoos, lotions, make-up, vitamins, supplements, over the counter medications, basically anything that comes EVEN CLOSE to your mouth!! I made the mistake of thinking that Gas-X Chewable Tablets were gluten free and I was eating those things like candy. Turns out they contained gluten! (The softgels are okay for us.)

One thing that I found as absolutely essential when shopping is the delphi list. It is a list that is updated on a regular basis, broken down into convenient categories, which makes it alot easier for shopping. You go to www.delphiforums.com, click on the left hand side "Health & Wellness". Then you click on the second forum down "The Celiac Disease Support Group". (You will have to register and log in, but it is free). Once you are in there, scroll down to where you see "Gluten Free Products List", and click on that. The list comes up all categorized for you. It is a godsend. Also, looking through the list, you will be absolutely amazed at all the mainstream stuff that is perfectly fine for us! There is also a section where you can go in and download the whole list to print off.

You will find this site has alot of people with vast knowledge of this disease and are always there for support. Any questions, ask away! We've all been there......

Welcome!

Karen

Mury Newbie
Mury
Posted

Hi Jill

Welcome to the board, I too am new, just diagnosed about 6 months ago. In answer to your question about rest. the only one I know about is Outback Steak House - they have a gluten free menu (with a brownie desert that is just awesome!) Good Luck!

Mary :D

Guest nini
Guest nini
Posted
hi!

What multi vitamins do you guys suggest? which ones seem to digest the best?

Do your doctors suggest that you have bone density tests? every year? I have never had one. I am 31 years old by the way.

Do you guys suggest any books on celiac or gluten-free cookbooks? anything like that?

Do you know of any chain restaurants that have gluten-free menus? i heard that applebee's did, but the ones in my town do not.

any other info you guys could pass on that might help would be much appreciated.

thanks alot

Jill

I take a Isotonix multi vitamin called MultiTech by Market America, you have to get it from a distributor, it's a powder you mix with water and drink, and it's gluten free.

My daughter takes childrens chewables, I just found Lil Critters Gummy Vites at Wal Mart, they look like gummy bears and she loves them. They also say gluten free right on the label.

I got a Wheat Free/Gluten Free guide to dining out from The Gluten Free Mall, links are on this site... it has listings for many restaurants. Triumph Dining also has a dining guide out.

do you have the Delphi Forums list on mainstream gluten-free foods? It's extremely helpful. Also, contact your local grocery stores main offices and ask them if they have lists of their private label brand products that are naturally gluten free. Ingles grocery store has one on their web site that you print out. Wal Mart's Great Value brand has started labeling all of their products that are gluten free. I just went shopping there last week and was surprised at how much was actually gluten free.

You have to be really vigilant about hidden glutens too, and cross contamination. Make up, vitamins, even lotions and shampoos have to be gluten free, toothpastes, mouthwash, hand soaps...

eventually you will get the hang of it. This site is an invaluable resource, there is so much here that will help you, just read read read!

happygirl Collaborator
happygirl
Posted

Outback, Pf Changs, Carrabas, and Bonefish Grill are some of the restaraunts that have gluten-free menus.

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

Celiac.com Sponsor (A8-M):


Nobodyzdarlin1 Newbie
Nobodyzdarlin1
Posted
  • Author

thanks all for your help!

Jill

Archived

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

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.