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 Mother And Daughter

my3kids

By my3kids
in Coping with Celiac Disease

Recommended Posts

my3kids Rookie
my3kids
Posted

I have type 1 diabetes and am now recently (within the last six months) diagnosed with celiac disease. Never had any symptoms except some mild upper abdominal discomfort. Great GI doc suggested an endoscopy to rule out hernia and diagnosed celiac. TTG was off the charts for me as well. Now my 8 yo daughter has been diagnosed and only because her growth started to lag a bit. Her ttg was 9 and IGA (I think) was 30.

Needless to say, I am overwhelmed now more than I was when it was just me. A few questions: because we don't have any overwhelming symptoms, will an ocassional gluten-containing food screw us up and redamage any healing that had occurred. Does MSG have gluten in it and what's the deal with soy? How about Frosted Flakes? Thanks for any help you all can offer especially for my daughter's sake.

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Hello

Sorry you & your daughter are having a heard time of this. I will tell you it will get better... But having a crumb of wheat is the same as having a bowl of wheat...... Msg does not contain gluten but many people can not tolerate MSG ( me for one)

Frosted flakes are not gluten-free.

I would start out by eating simple "naked" meat , veggies, & fruit at first. By Naked I mean with no marinate or glazes .... you can spice it up with your favorite spices, salt, pepper, worchestire & so on.

When a product states it does not contain wheat that does not mean that it doesn't contain gluten .. So look for product that have no gluten in them or hidden gluten which can be found in things like soy sauce, beer, & so on.

If I can be of any help finding your cravings please send me a personal e-mail. I'm a mentor for several years now & I know the cream of the crop products...

hth

mamaw

Darn210 Enthusiast
Darn210
Posted

Here is a list of companies that do not hide the gluten in their labeling. This means they will call out wheat, rye, barley and oats on their labels and you don't have to worry about the generic "natural flavoring". Kraft is one of the big companies that do not hide their gluten but there are many others.

Open Original Shared Link

Envirokids Amazon Frosted Flakes would be your best substitute for the Kelloggs Frosted Flakes. It can be found at health food stores or possibly the health food section of your regular store. Mainstream cereals would be fruity pebbles, trix, and dora stars.

Unfortunately, like mamaw said, cheating will cause damage. Some people continue to have issues after going gluten free. They find they have additional intolerances to other foods with dairy and soy being the most likely culprits. If you have very minor symptoms, I probably wouldn't eliminate those foods at this time. If in a month or two, you find you don't feel any better, you may want to try eliminating one or both (at least for a while). Many people have problems with lactose until they heal. My daughter was fine with just taking a lactaid tablet for about 6 weeks after going gluten free. I don't think we even really needed to but we did it because the doctor recommended it since her sugar processing was on the low side.

If your daughter has some favorite foods that you are having a hard time replacing/substituting, just post her favorites (probably best in the kids section) and you'll have lots of moms sharing what has worked best for their kids.

loco-ladi Contributor
loco-ladi
Posted

Welcome, it may not seem it now but you can get thru this, we all did and you can also.... You will have good days and bad days but heck thats life in general so why should this be any different right, lol...

depending on your dairy situation (and any others) and mostly for your daughter as I recall when I was that age pizza rules the world.... still does some days, lol......

2 corn torillas (I use mission brand white corn)

gluten-free pizza sauce (sorry make my own)

gluten-free pizza cheese (Kraft)

gluten-free toppings (I use hormel natural choice ham, hormel black label bacon and/or hormel pepperoni depending on my mood fiound some of hormels chicken strips I am going to try out tonight!)

place 1 tortilla on a baking pan...

sprinkle with pizza cheese

top with 2nd tortilla

add sauce, cheese and topppings

bake 500 oven until golden brown and bubbling... caution very hot but very close to perfect!

my3kids Rookie
my3kids
Posted
  • Author
Here is a list of companies that do not hide the gluten in their labeling. This means they will call out wheat, rye, barley and oats on their labels and you don't have to worry about the generic "natural flavoring". Kraft is one of the big companies that do not hide their gluten but there are many others.

Open Original Shared Link

Envirokids Amazon Frosted Flakes would be your best substitute for the Kelloggs Frosted Flakes. It can be found at health food stores or possibly the health food section of your regular store. Mainstream cereals would be fruity pebbles, trix, and dora stars.

Unfortunately, like mamaw said, cheating will cause damage. Some people continue to have issues after going gluten free. They find they have additional intolerances to other foods with dairy and soy being the most likely culprits. If you have very minor symptoms, I probably wouldn't eliminate those foods at this time. If in a month or two, you find you don't feel any better, you may want to try eliminating one or both (at least for a while). Many people have problems with lactose until they heal. My daughter was fine with just taking a lactaid tablet for about 6 weeks after going gluten free. I don't think we even really needed to but we did it because the doctor recommended it since her sugar processing was on the low side.

If your daughter has some favorite foods that you are having a hard time replacing/substituting, just post her favorites (probably best in the kids section) and you'll have lots of moms sharing what has worked best for their kids.

Thanks for the information. I've been reading alot on this website about lactose intolerance. I did not know that those with celiac had issues with lactose. Is this really common. You mentioned "if in a month you don't feel better" - we don't feel badly at all. No symptoms other than the mild growth delay with my daughter. I'll leave lactose in for now I suppose.

Please help me find a good gravy. My daughter's comfort food is chicken and rice with gravy. The chicken and rice are gluten-free but I can't find a tolerable gravy. Any suggestions? Thanks.

Sharon Marie Apprentice
Sharon Marie
Posted

You can make very good gravy with corn starch. :o

Darn210 Enthusiast
Darn210
Posted
Thanks for the information. I've been reading alot on this website about lactose intolerance. I did not know that those with celiac had issues with lactose. Is this really common. You mentioned "if in a month you don't feel better" - we don't feel badly at all. No symptoms other than the mild growth delay with my daughter. I'll leave lactose in for now I suppose.

Please help me find a good gravy. My daughter's comfort food is chicken and rice with gravy. The chicken and rice are gluten-free but I can't find a tolerable gravy. Any suggestions? Thanks.

The area of the small intestine that is damaged by celiac is the same area that processes lactose. So if there is a lot of damage, the body will not be able to process lactose. The normal symptoms of lactose intolerance is very similar to some people's celiac symptoms . . . diarrhea, abdominal pain. As the gut heals, the ability to process lactose returns (I would say for most people). If you aren't having those kind of symptoms, I wouldn't worry about it . . . and it sounds like you're not. :)

Now, on to more important things . . . gravy! I don't know of any premade gravies. Have you made gravy before? Are you looking for a milk based gravy or broth based? If you were purchasing your gravy, that is probably a broth based gravy

Here is a recipe from Julie (check the quantities, you might not want to make that much)

Check for gluten-free chicken broth - I believe great value brand (Wal-Mart) is good or you can use Better than Boullion or Herb-ox boullion.

I usually use a flour substitute but I will probably try the potato starch next time. A little tip that I got from my brother-in-law just recently when the gravy was coming out lumpy . . . he used one of those immersion mixers and "delumped" it making the gravy nice and smooth.

Good Luck, ask more questions when you need to. . .

I make a roux with the pan drippings, butter and a flour substitute.

I used to use rice flour until I got a little tip from Patti last year about using potato starch (thanks Patti, best gravy I've ever made :D )

Ratio of butter to flour substitute is 1 to 1, I usually do about 6-8 tbsp of each.

Stir or whisk the flour/potato starch in with the buter and pan drippings over low-medium heat until the butter melts and the flour incorporates making a sort of paste, then stir in chicken broth slowly and a little at a time until it reaches the desired gravy consistency (usually about 4-6 cups of stock). Season with salt and pepper to taste.

The potato starch doesn't get lumpy or gritty/grainy like I had experienced with the rice flour.

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

Celiac.com Sponsor (A8-M):


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):

  • Who's Online (See full list)

  • 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.