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

Newly Diagnosed


JJoan

Recommended Posts

JJoan Newbie

Hi,

I was really happy to find this forum this morning. I was diagnosed with Celiac Disease about a month ago and have been going through quite an frustrating journey since then. We just came back from a vacation and I found myself going hungry much of the time or living off raw almonds and gluten-free cookies. The gluten-free bread I have found is yucky and I never did like corn flakes for cereal.

The only bonus I can see is that I have been lactose intolerant for years and it's miraculously gone away.

I am a grandmother, living in Ontario, Canada and work fulltime as an ESL teacher.

I am interested in any ideas you have with appetizing gluten-free products and others' experiences. Do you know of any bread or cereal that doesn't make you gag? Does anyone else have side of effects of this disease such as osteoporosis, migraines, etc. I have had this for a long time and didn't know it.

Joan


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



Celiac.com Sponsor (A8-M):



flourgirl Apprentice

Hi Joan and welcome! Lots of us suffered for years before diagnosis. You'll find in every way that you are not alone. Every Celiac is unique in their experiences, and yet there is very much common with this condition. I'm glad you found the site! There is tons of information to be found here. Keep reading and asking questions. There is always someone happy to chime in.

I've tried quite a few specifically gluten free products, such as are available here, which is not a lot. I haven't liked very many things as far as bread or snacks. We stick pretty much to fresh, unprocessed foods. I do bake my breads, and have tried a number of different flour mixes before I found some that are satisfying to me. There are lots of posts here concerning foods and recipes. Happy hunting! :)

schmenge Newbie

Check out The Gluten-Free Gourmet Bakes Bread by Bette Hagman. Lots of good recipes. First gluten-free bread I have found that could be used without having to toast it first. I am partial to Kinnininick for premade, although I toast it first. Barbara's Crispy Brown Rice cereal is just l like Rice Krispies and there are numerous others (at least to me) good cereals. You'll eventually find brands you like.

Jenny (AZ via TX) Enthusiast

Vacation is hard for me too. I live on yogurt (I like the Stonyfield Organic), bananas, nuts, cheese and gluten-free crackers. I go to restaurants that seem "safe" and hope for the best. Always call ahead.

As for cereals, rice chex is gluten-free. I also like Cocoa Pebbles (I know not good for me). I made rice crispy treats substituting Cocoa Pebbles for Rice Crispies. Everyone loves them!

As for bread, most of the pre-made bread is horrible. Fortunately, I live in a city that has a gluten free bakery and get my baked goods there. The downside is that they are pricey.

I also had migraines and now have osteopenia which will hopefully be reversed now that I am gluten free. I have only had one or two migraines since going gluten free (about 8 months or so). Also, and this was huge for me, my sinuses have cleared up substantially. I had chronic sinus problems and most of that has disappeared.

curlyfries Contributor

You can't eat corn flakes anyway........they contain malt flavoring........unless there's a gluten-free one. Eating basic meat, fruit and veggies is the way to go, especially in the beginning. You don't have to buy alot of specialty gluten-free products. This site gives you the names of companies that will state on their labels whether a product contains wheat, barley, or rye. Wheat has to be labeled,now, but barley often hides under things like 'natural flavors'. The companies on this site will not hide anything.

Open Original Shared Link

Some examples of everyday gluten-free foods:

eggs, many bacons and sausages(eg: Morrell, Black Label, Hormel), many tortilla chips, fresh and frozen veggies(but not with sauces), fruit, Skippy peanut butter, cheese, meat, fish, many McCormick seasonings. The list goes on and on :D

Eating out is definitely a challenge, especially in the beginning. You absolutely must talk to the manager or chef, IMO, to make sure they understand. Servers often do not. Not only must the food be free of gluten-free ingredients, but it also needs to be prepared on a clean pan or grill.

JJoan Newbie

Thanks for the welcome and all the good suggestions! I have decided to start baking for the first time in years after browsing this site.

Jenny, that's encouraging that your migraines have almost gone. I have had three in the past two weeks, including yesterday and today so was feeling pretty discouraged but we've had heavy, rainy weather. I'm hoping my osteopenia will improve, too, now that I may be absorbing some of the calcium I take.

Curlyfries, I agree that the waiters are not the ones to talk to in a restaurant, although we had a terrific one on vacation in Key West--he substituted fruit for toast at breakfast and was really helpful. In a Chillies restaurant earlier, the waiter said the grilled salmon was fine but it had a breading on it and even though I pealed it off, I had a reaction. By the way, the Corn Flakes were gluten free that I had but I'm looking for alternatives.

Jenny, we just discovered that there are gluten free bakeries here, too, that we're going to check out. I agree about the frozen ones at the health food store. They are awful.

Schmenge, I've got two of Betty Hagman's books and plan to try some recipes this week that I'm off. They look wonderful.

We just came from the best health food store in the city and then the market and I've got two new cereals to try. Wow, these products are sure expensive but it's worth it if they help.

It's good to "meet" all of you and thanks, again, for making me feel welcome.

Joan

curlyfries Contributor
In a Chillies restaurant earlier, the waiter said the grilled salmon was fine but it had a breading on it and even though I pealed it off, I had a reaction.

yeah......bad idea. But we live and learn. I used to think it was OK to eat the topping off of pizzas :P


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



Celiac.com Sponsor (A8-M):



sixtytwo Apprentice

You will feel so much better when you get going and find all of the food that is gluten-free. For bread, I make mine from Bob's Red Mill Bread Mix, and make it in four small loaves rather than the one large one. As I am the only one in the house that eats it, it lasts a reasonable long time. The other bread thing that I like is Kinninicnick (spelling?) bagels. They make good buns for burgers, however, a bit bulky.

Bob's Red Mill pizza crust mix is THE BEST. I have been eating gluten-free for several years now and just tried this product and I loved it.

There are lots of brownie and cake mixes that are good. For cookies and bars I use Bob's Red Mill All Purpose flour in my favorite recipes, backing off just a bit on the amount of flour (everything is trial and error) and adding about 1 t. xanthun gum for each cup of flour.....great results. It seems the wetter the recipe the better the results with subbing in the gluten-free flour, like this year I added too much water in my favorite pumpkin bread recipe by mistake and it turned out so good, best yet using gluten-free flour. When you make brownies from a mix, add some chocolate chips if they are not already in there.

Rice Chex are gluten-free now, the regular ones so that is much cheaper than buying gluten-free cereal. I love Cream of Buckwheat instead of Cream of Wheat, it is yummy and if you like grits, they are made of corn. Corn tortillas are good and they make good wraps for lunch.

You need to put your thinking cap on and just go for it in the store.........doing some research down all of the aisles. It is much easier now as most products tell you everything that is in them and all of the allergens in them. Most whole meats, veggies and fruits are gluten-free, so you are safe there.

Hope this helps. Barbara

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. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    2. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    3. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    4. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
×
×
  • 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.