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

Hooray! Hooray! I Can't Believe It!


nu-to-no-glu

Recommended Posts

nu-to-no-glu Apprentice

First, I want to thank everyone on this site for giving me insight to help me get the help and info I have been searching for 28 years for. I finally found a dr that completely agrees with my suspisions of celiac and actually looked at my bloodwork to help gain insight (low B12, high thyroid, etc.) And knows enough about celiac to actually pull all the mysterious symptoms together! I left my appt feeling disbelief, as I usually leave drs appts in sadness, but this time I felt relief! I'm not crazy! I even found out I'm intolerant to yeast and tuna.

I'm going back next week to check for dairy, soy, etc intolerances, but I started my gluten free diet today (I could care less about an endoscopy at this point) and to get all vitamin levels checked and cannot wait to feel better. I just had to share my joy after searching for so long, you all are the only ones who could truly understand how awesome it feels to have a dr actually help you! I hope that everyone searching gets to feel this, as it's been 28 very looong unhealthy years!


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
First, I want to thank everyone on this site for giving me insight to help me get the help and info I have been searching for 28 years for. I finally found a dr that completely agrees with my suspisions of celiac and actually looked at my bloodwork to help gain insight (low B12, high thyroid, etc.) And knows enough about celiac to actually pull all the mysterious symptoms together! I left my appt feeling disbelief, as I usually leave drs appts in sadness, but this time I felt relief! I'm not crazy! I even found out I'm intolerant to yeast and tuna.

I'm going back next week to check for dairy, soy, etc intolerances, but I started my gluten free diet today (I could care less about an endoscopy at this point) and to get all vitamin levels checked and cannot wait to feel better. I just had to share my joy after searching for so long, you all are the only ones who could truly understand how awesome it feels to have a dr actually help you! I hope that everyone searching gets to feel this, as it's been 28 very looong unhealthy years!

I understand your joy in finding a doc who understands and agrees with you.....congratulations!

Best wishes for a rapid recovery!

JoAnn

P.S. Here's a great link that explains the ins and outs of going gluten free:

Open Original Shared Link

nu-to-no-glu Apprentice

Thanks for the link. I realize now the even harder work begins! I just went to whole foods and wow, what a long hard trip (even harder with an impatient 20 month old) They peovided me with a 6 page list of every gluten free product in the store, and it was still overwhelming! I think I went down each aisle 3 times!

ravenwoodglass Mentor

It is great to finally know and to be able to start the healing. It can be overwhelming at first visit to the store but it will get easier. If you stick with mainly whole unprocessed foods at first it can help you both heal faster and will be less stressful in the store. Since WF gave you a list you may want to sit and formulate your shopping list at home and once you know where everything is it will take less time.

jkr Apprentice

I went to Whole Foods last night to pick up some gluten free items. I was in a hurry so I couldn't spend a lot of time. I didn't know that they have a gluten free list. The store is so big it can get overhwelming trying to find everything. I'll have to get that list next time I go.

LDJofDenver Apprentice

There are also lots of mainstream groceries that are gluten free, in your "normal" grocery store (King Soopers/Kroger; Safeway, etc.). And many of those stores also have safe lists.

Plus, there are gluten-free grocery shopping guides out there to make your life WAY easier at the store:

Here are links to two different ones:

Open Original Shared Link

Open Original Shared Link

There is another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I bought the Cecilas guide, it was about $25 and worth every dollar. Put an end to standing in the aisle and reading packages!

There are also restaurant guides out there, too.

nu-to-no-glu Apprentice

Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.

I eliminated it completely except for a tiny bit in my morning coffee and butter (I used Ghee at first which is lactose and casein free). After about 3 or so months I added back in cheddar cheese in small amounts and yogurt and a couple months later I added back mozzerela and tried a small amount of ice cream. Yogurt and hard cheeses like cheddar are pretty much lactose free so those can usually be tolerated before the soft cheeses, ice cream or drinking milk. Because I showed a reaction to casien in testing , a small one but still a reaction I don't do very much dairy other than on rare occasions but seem okay with small amounts. My reaction to soy is much worse, I am almost as sensitive to that as gluten so that puts out most dairy subs.

The Fluffy Assassin Enthusiast
Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.

I eliminated dairy completely. Going gluten-free was a cakewalk--OK, a breeze by comparison. If you can have soy (whee, I eliminated that, too), Vegan Gourmet's mozzarella substitute is really very good slipped into lasagna. Not anything like mozzarella but vaguely like a mix of lasagna and ricotta, as in what you would put in lasagna anyway.

But really, even with a husband working at Whole Foods, the substitutes will get really expensive really quickly. Best is to do what ravenwoodglass said: go simple. Meats, vegetables, fruits if you've resolved your fructose worries, rice and potatoes.

If you give up dairy, get a referral to a professional nutritionist or dietitian. I have no kids nor dependents and thus can blunder around making mistakes at every turn with the worst result being that I feel bad for a day or so and foolish for a minute or so. With a toddler, you don't really have that freedom. Getting all the vitamins and minerals you need is a trial, more than any of us (well more than I can) do for ourselves.

Also also, there's a gluten-free casein-free milk substitute powder called Vance's Dari-Free which seems to get uniformly positive reviews. Unfortunately, it isn't carried in many stores. You can order online but their site didn't work very well with Firefox. Maybe you'll have better luck.

Glad you got your diagnosis, and good luck with navigating the diet. Gluten-free is easy; dairy-free not so much.

Ahorsesoul Enthusiast
Thanks for the link. I realize now the even harder work begins! I just went to whole foods and wow, what a long hard trip (even harder with an impatient 20 month old) They peovided me with a 6 page list of every gluten free product in the store, and it was still overwhelming! I think I went down each aisle 3 times!

I shop at our local Fresh and Natural store. Mainly because the price label for all gluten free items has a red square on them. No guess work involved. I think this idea should be a law in all stores.

nu-to-no-glu Apprentice
I eliminated dairy completely. Going gluten-free was a cakewalk--OK, a breeze by comparison. If you can have soy (whee, I eliminated that, too), Vegan Gourmet's mozzarella substitute is really very good slipped into lasagna. Not anything like mozzarella but vaguely like a mix of lasagna and ricotta, as in what you would put in lasagna anyway.

But really, even with a husband working at Whole Foods, the substitutes will get really expensive really quickly. Best is to do what ravenwoodglass said: go simple. Meats, vegetables, fruits if you've resolved your fructose worries, rice and potatoes.

If you give up dairy, get a referral to a professional nutritionist or dietitian. I have no kids nor dependents and thus can blunder around making mistakes at every turn with the worst result being that I feel bad for a day or so and foolish for a minute or so. With a toddler, you don't really have that freedom. Getting all the vitamins and minerals you need is a trial, more than any of us (well more than I can) do for ourselves.

Also also, there's a gluten-free casein-free milk substitute powder called Vance's Dari-Free which seems to get uniformly positive reviews. Unfortunately, it isn't carried in many stores. You can order online but their site didn't work very well with Firefox. Maybe you'll have better luck.

Glad you got your diagnosis, and good luck with navigating the diet. Gluten-free is easy; dairy-free not so much.

Yeah, I think the fructose thing was just a dr making an assumption without proper testing. I'm going to keep an eye on things. It's nice to strip down the diet and eat so simply. It really opens your eyes to what can and can't be tolerated. And it seems to have been very instant for me. I agree, dairy is gonna be a struggle. My props to all of you who have mastered it!!!!

ang1e0251 Contributor

For dairy, I was already intolerant many years so I didn't change anything there. Fresh milk products no, aged products yes. If I would have felt bad, eating cheeses I would have stopped but I would have cried a lot!

happygirl Collaborator

Some of this may help as you get started - Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Great info to get you started: Open Original Shared Link

Archived

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

  • 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. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    Jane02
    Newest Member
    Jane02
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.