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

Dx'd Yesterday...

amberleigh

Recommended Posts

amberleigh Contributor
amberleigh
Posted

I was just dx'd with celiac disease yesterday (colonoscopy/endoscopy following up on a positive blood test) and have no idea where to start with a gluten-free diet. I am the epitome of a junkfood eater, with Taco Bell being a food group for me.

I have an appt with a dietician, but it's not until the 27th and I'm trying to get in with someone sooner...but in the meantime, are there good websites? I really would like to know specific products I can eat...i.e. Tostitos chips or Chips Ahoy chocolate chip cookies...if possible. I've never read labels in my life. What are the things I should be looking for, other than the obvious (wheat, rye, barley, oats)?

Also, I have 3 children (twins who are 20 months and a son who is 2 months)...should I request that they be tested by blood? What it the % possibility that they have celiac disease as well?

I suppose I was misdx'd with IBS about 6 years ago. Had a flare up of diarrhea for about 8 weeks. With some meds and trying to avoid what I thought were my trigger foods, I was able to control it. Didn't even use the meds for the most part. Now, after I stopped nursing my son, I had a flare up again. With a more proactive doctor this time around, she sent me to a GI (I also had anemia and elevated liver enzymes this time around), and here I am.

Thanks for any advice you can offer. I appreciate it.

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

Celiac.com Sponsor (A8-M):


whitball Explorer
whitball
Posted

Welcome to this site. This site is where I get most of my information. I'm not sure that the dietician will provide alot of information. I requested a consult also, but the person I saw did not have experience with this disease, so she was not very helpful. I also want to congratulate you on getting a diagnosis and ending your misery. The journey of being gluten free is not always easy and you will probably feel crappy for awhile until you figure out things. Start simple with basics of veggies, meat and fruit. Do yourself a favor and don't add a bunch of new foods. You will need to allow your insides time to heal. I would make sure that your children are tested. Good luck.

Worriedwife Apprentice
Worriedwife
Posted

This is probably the best website for your diagnosis. There are a lot of very knowledgable people posting to this board. Also, the main page can direct to you lists of ingredients that are safe, and those that are not.

The bad news is you'll probably have to give up going to Taco Bell. I'm pretty sure that I seen several posting indicating that there is no safe food there. Also, take Chips Ahoy off of your list of things to eat.

But, that doesn't mean you can't eat things that taste good. You just have to learn how to make safe substitutes. You'll probably have to start making more of your own food, and eating less (or none) prepackaged junk food.

If I remember correctly, the Lays chips in a can are gluten gree and most corn tortilla chips are good to eat. (Please correct me if I'm wrong about this). You can get gluten free cookies at natural food stores, but they are pretty expensive.

I would start with naturally gluten free foods, like veggies, potatoesand meat or fish. Salads are good too, but you'll need to be careful of dressings. It will be hard in the beginning, but stick with it and things will get easier.

amberleigh Contributor
amberleigh
Posted
  • Author

Thank you both very much for your replies.

I guess I'm looking for an easy route, which I'm sure there isn't one. Grocery shopping is going to be a whole new experience for me and since I have not yet met with a dietician and don't really know what to look for on labels (nor do I have the time with 3 kids under the age of 2 to read every label in the store)...is there a list of products somewhere? I mean, I know I can go to Whole Foods or Trader Joe's or a healthfood store and get specific gluten-free products. But I'm talking about just regular food that happens to not be made with gluten, ya know?

For example...Fritos corn chips (I have no idea, just throwing it out there). If I knew that of all the chips in the chip aisle, these were safe to eat, it would just make the first few shopping trips until I can meet with a dietician so much easier.

Thanks again.

Frazzled,

ETA - I just came across this site... Open Original Shared Link

Is this pretty accurate?

JennyC Enthusiast
JennyC
Posted

Welcome!

I hate to be the one to break it to you...but life is going to change majorly. I'm a college student with a young son and we used to eat out a few times a week before he was diagnosed. I don't feel that it's safe to eat out at those places anymore. Some people eat some items at Wendy's and other places, so it's best that you go to the websites or call the restaurants. The Outback and PF Changs have gluten-free menus.

What you can eat? I suggest that you do a search on this forum for words like "normal foods" and "favorite." By the way, this is the best place for information. There are many normal foods that you can eat. The best thing to do is stick with the companies that will clearly list their gluten. Some of the big companies are Kraft and General Mills. Each of these companies includes many brands. I will post a link to a list of companies that will list their gluten. Hormel has a gluten free list on their website, and some of their convenience foods are included. Call all other companies to find out if their food is gluten free if they do not clearly list their gluten. You must read every label every time. Things to watch out for are natural flavors, spices, thickeners, broth, and some watch for modified food starch.

There are many tasty gluten free specialty foods. I'll list some popular brands and then you can do searches for them to see what they offer: Kinnikinnick, Glutino, Ener-G, Tinkyada, Gluten Free Pantry, Pamela's, and Health Valley. You can buy gluten free cookies and brownies, etc, but it's much cheaper to make your own.

I convert old recipes by using 3 parts white rice flour, 2 parts potato starch, 1 part tapioca flour/starch, and 1 tsp xanthan gum for every 1.5 cups of flour. In addition to those flours I would pick up brown rice flour, potato flour, corn starch, almond or flax meal, and a bean flour like garfava. I bread meat for frying in a mix of white rice flour and and corn starch. glutenfreeda.com has lots of great gluten free recipes. Many websites like allrecipes.com and recipeszaar.com also have gluten free recipes. Mostly I just convert regular recipes to gluten free using the formula given above.

You should also search for cross contamination. That is an issue in itself.

Although it seems very complicated now, it will get much easier. :)

Open Original Shared Link

JennyC Enthusiast
JennyC
Posted
Thank you both very much for your replies.

I guess I'm looking for an easy route, which I'm sure there isn't one. Grocery shopping is going to be a whole new experience for me and since I have not yet met with a dietician and don't really know what to look for on labels (nor do I have the time with 3 kids under the age of 2 to read every label in the store)...is there a list of products somewhere? I mean, I know I can go to Whole Foods or Trader Joe's or a healthfood store and get specific gluten-free products. But I'm talking about just regular food that happens to not be made with gluten, ya know?

For example...Fritos corn chips (I have no idea, just throwing it out there). If I knew that of all the chips in the chip aisle, these were safe to eat, it would just make the first few shopping trips until I can meet with a dietician so much easier.

Thanks again.

Frazzled,

ETA - I just came across this site... Open Original Shared Link

Is this pretty accurate?

That list is pretty old. Manufacturers can change the ingredients at anytime. That's why it's best to stick with companies that will clearly list their gluten. (See the link I just posted.) If you really feel that you need a list right now, I can email you one updated 2/07 if you send me a private message with your email address.

Buttercup Rookie
Buttercup
Posted

Here is a list that I have found that might be useful to you. I went through the list and wrote down the products that I use to keep in my purse for shopping trips.

Open Original Shared Link

This site has lots of recipes to get you started.

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


amberleigh Contributor
amberleigh
Posted
  • Author

Thank you everyone!

JennyC-I tried to send you a message...I hope it worked.

One more question for you all (well, I'm sure I'll have TONS, but for now)...

What are the ingredients I should be looking for on the labels? I know wheat/barley/rye/oats...but what are the other ones? I saw something about malt? I guess I don't know the "secrets" of labels yet. Please help!

Guest micah
Guest micah
Posted

Hi Amber,

I'm pretty new to this too, it is getting easier all the time though. If you go to the home page of celiac.com and click on "Site Index" then click on "Safe Gluten-Free Food List / Unsafe Foods & Ingredients" that'll give you a list of ingredients that are safe/unsafe.

As for grocery shopping, I'm sure Noglugirl will also be along soon to give you a present of a great list of stuff. Here's a few ideas

One thing you can be sure of is meats, fish, chicken, veggies and fruits (fresh, frozen, canned), nuts -rice, corn, anything that is naturally wheat-gluten-free is a good place to start.

I also quickly found some of my favorite foods that were gluten free like Jello Pudding and Ore-Ida French Fries and made sure that I always have them in the kitchen so that I never have to feel too deprived and go crazy. Let yourself have your favorite foods that are gluten free, it made it a lot easier for me to make the change. At first it is a challenge, but it is so worth it to feel better.

Good luck,

Micah

happygirl Collaborator
happygirl
Posted

You need to look for wheat, rye, barley, malt (malt is often derived from barley), and oats.

Anything that has flour/unbleached/enriched flour is wheat flour. Chips Ahoy and all 'normal' cookies have wheat in them. There are gluten-free alternatives.

All regular pastas have flour in them. You'll need an alternative like Tinkyada, a rice based pasta.

I don't recommend relying on lists. Your best bet is to learn to read labels. That is the only way, coupled with calling a company to ask, that you are eating safely. If you don't know that its safe, don't eat it.

happygirl Collaborator
happygirl
Posted

And, all first degree relatives are recommended to be screened for Celiac. This includes parents, siblings, and kids. There is about a 1 in 20 chance that a family member of a Celiac has it.

Phyllis28 Apprentice
Phyllis28
Posted

Reading labels will become second nature over time and will not be a time consuming process. Many companies have their labels on their website. You could do some basic research from home before you go to the grocery store. You still need to read the label when you get to the store since the website may have the current ingredients but the store shelf may have an older product.

My basic rule for buying packaged food is that if I can not indentify all ingredients as gluten free I don't buy it. You can also buy the product and research it when you get home. Most of the processed foods I have in my pantry have no more than 4 ingredients.

Being gluten free means you will spend more time cooking. I make sure I have left overs that can be reheated.

I know it is difficult now but it will get easier.

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.