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

Questions


Rach219

Recommended Posts

Rach219 Newbie

I was just diagnosed with celiac disease a little over a week ago and am still trying to sort things out, in terms of what I can and can NOT eat. I have not been able to see a dietician yet b/c of having to get back to college. So I was wondering if anyone could answer the following questions for me or have any ideas of where I can get the needed information.

- What do I do about taking the Lord's supper on Sunday morning? Is taking a small, small piece of communion bread okay?

- Is maltodextrin an okay thing to consume or do I need to stay away from it?

- On a gluten free diet can you have artificial flavoring and/or natural flavoring?

- Can you have artificial and/or natural coloring?

- Does anyone know of a site that has a list of ingredients to look out for on labels?

Thanks So Much!

Have a great day!

~Rach219


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
- What do I do about taking the Lord's supper on Sunday morning? Is taking a small, small piece of communion bread okay?

- Is maltodextrin an okay thing to consume or do I need to stay away from it?

- On a gluten free diet can you have artificial flavoring and/or natural flavoring?

- Can you have artificial and/or natural coloring?

- Does anyone know of a site that has a list of ingredients to look out for on labels?

1. communion: it's a personal call. the official church stance is that transubstantiation means that it is no longer wheat, but the body and blood of Christ and hence contains no gluten. I personally don't believe in transubstantiation that can turn grain into human flesh, literally. (symbolically, fine; literally, no.) some people decide to "trust in God", figuring that if his church would require it, he'll make sure it doesn't hurt people. others choose to recieve the wafer in their hands, and pocket it and dispose of it. others choose to just drink the wine (a sufficient replacement according to church doctrine), but there is a small risk of contamination from the others who drink from the cup. others choose to forgo it entirely and believe that God will understand their choice.

2. Maltodextrin - I believe you have to call and check on that one.

3. Natural/artificial flavoring - I've never heard of an artificial flavoring with gluten, but I don't assume, and I always call on natural flavorings for companies who don't explicitly announce they will label all gluten containing items (like Kraft).

4. Natural/artificial coloring - ditto above.

5. Website for safe/unsafe - the Celiac.com main site has a list of safe and unsafe foods and things to watch for in ingredient labels. it's one of the best lists I've seen around.

Guest barbara3675

Hello Rachel-----Welcome to the message board, you will find answers to all your questions here if you stick around long enough. I don't have answers to all your questions, but I do have two things to offer.

1. I took some almond crackers (Blu-Daimond Nut-Thins available at the grocery store) to church with me, broken in half, and the pastor (ELCA Lutheran) put one in the dish that he hands them out from so mine was blessed with all the rest. It worked beautifully. As the cracker is kind of tan color, and it ends up being different shaped by being broken in half, he can tell mine from the rest of what he has in his dish. We had already discussed ordering rice wafers, but this is a better solution as I think the rice wafers would have looked just like the wheat ones that everyone else was taking. Both the pastor and I are satisfied with this solution.....now, if you are Catholic, you will run into something very different and this is being discussed at this time in your church. Otherwise, any other denomination should be open to accomodating your needs.

2. Here is a site you can go to for printing off a 49 page printout of the foods that you CAN buy at the grocery store that are gluten free. I got this from my son as my granddaughter who is six now has celiac disease---diagnosed when she was one, a very sick little girl, who is now very healthy. The site is: www.napervillegi.com/celiac/GFfoodlist.pdf

I sure hope this will help you some. I found out just recently (at age 59) that I am gluten intolerant so now we know who gave the gene to my granddaughter, Ana!!!! I have to eat gluten-free/cf (also found out in the testing process that I am casein intolerant) so that I don't develop celiac disease. I am feeling so much better since going gluten-free. You will too. Give it time and have patience. Stick with foods that you know for sure until you get gluten-free savy (and you will). I had a leap up on the whole thing as I have been cooking and baking for Ana for five years now. If you just look at it as a new adventure in your life, then maybe it won't be so daunting. Find a health food store that handles gluten-free foods and use the mixes, they really are quite good. Also they have a bread made from almonds and rice that I love----real heavy and you really have to toast it, but it does the job---makes great garlic toast!!! Sometimes they are also knowledgable about celiac, I got lucky because the owner of my health food store is a celiac patient.

Best wishes to you.......Barbara

Tutahl75 Apprentice

Hi Rachel,

I lucked out and found a book that was later recommended by my nutritionist. It's called "Gluten Free Diet - A Comprehensive Resource Guide" and the author is Shelley Case. It's very helpfull in breaking down the good and the bad things in our diet.

Rach219 Newbie

Hello All,

Thank you so much for your responses and your help. It's getting easier for me to identify the ingredients that are off limits, when on a gluten-free diet. I was wondering if anyone else had problems with weight loss once going on the gluten-free diet. I've been on the gluten-free diet for 2 weeks now since being diagnosed with Celiac disease and I've lost a total of 7lbs. I'm still eating as much as I used to, it's just that the foods are now gluten-free instead of having gluten in them. Any suggestions on how to stop the weight loss or get back to my regular weight?

Thanks Again,

Rachel :)

celiac3270 Collaborator

I think everything's been answered except for your question about maltodextrin. In the United States, maltodextrin almost never contains gluten. It is usually made from corn in US products, though it is sometimes made with gluten-containing ingredients in other countries. You do need to be wary of maltodextrin in prescriptions, though, even in the US

mommida Enthusiast

I've been losing weight too. I think the first weight that comes off is water weight gain from your body's defense system. Muscles are starting to develop and gain strength. From what long term gluten-free dieter's say the weight gain will come soon enough. I've been making sure I eat a Tablespoon of peanut butter a day.

Laura


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



Celiac.com Sponsor (A8-M):



strack2004 Rookie

I've been losing weight also. It goes down slowly, increasingly so, but every so often it's down another pound. My scale is not very accurate. Need to get a new one soon. At the doctor's my last weight was 130 lbs. Of course, that counts clothes and they account for more weight now in a chilly fall. Last year at this time I weighed 160 lbs. However, I had already modified my diet considerably before starting on the SCD diet in July. I was using bread and oatmeal and pasta before July 26, but did not eat desserts or sugar things. Cheers, Ruth

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • 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
      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
      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
      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
      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
      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.