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
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.