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

Unbelievable Call From Doctor


sadiesmom

Recommended Posts

sadiesmom Rookie

I posted a couple of days ago about my 2 year old being gluten-free for only 10 days - most of which she was puny and sick and how her weight jumped up in spite of the sickness.

I spoke with the ped GI nurse practitioner and she said that the changes in toddlers can be drastic and quick - so the only way to know was to stay on the diet. While on the phone - I asked her about Metformin. My general doctor (who is Sadie's DR too ) wanted to put me on metformin for insulin resistance but would not do so while I was still breastfeeding. Even though the current research shows that it is okay to BF and take the drug (especially at this point as she is older). So I asked the Ped Gi nurse practioner to ask the Ped GI about it because I think it will come up again with my regular Dr. She was surprised and said - "You have insulin resistance and hypothyroidism?" I said yes. She then asked if she could ask me a personal question. She asked if I had trouble getting and staying pregnant. I had 4 miscarriages and it took me a year of trying to have Sadie.

So - she says to let her ask about the metformin and she'll call right back. She calls back 5 minutes later and says - that the Ped Gi says the metformin would not be a problem but that I probably won't end up needing it if I get and stay on a gluten-free diet - because he said he would bet anything that I have celiac. He said that I should get the panel done and see what that said - but because we already know that she has the genetic marker - most likely she got it from me.

Interesting that after months of he-hawing around ...SNAP...he can just diagnose over the phone. And he isn;t even my doctor.

Anyway - we are going back to being strictly on the gluten-free diet. At some point someone on here said they had a toddler and there were some posts about gluten-free brand name foods that are okay and that toddlers like. I can't find the post. Is that person still out there?

Thanks,

Amy


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Sounds to me like the nurse practitioner diagnosed you.

ravenwoodglass Mentor

"So - she says to let her ask about the metformin and she'll call right back. She calls back 5 minutes later and says - that the Ped Gi says the metformin would not be a problem but that I probably won't end up needing it if I get and stay on a gluten-free diet - because he said he would bet anything that I have celiac. He said that I should get the panel done and see what that said - but because we already know that she has the genetic marker - most likely she got it from me."

I can't really answer your actual query but that is a smart doc and nurse you have there. I am celiac and was diagnosed with diabetes about a year ago. I was ill from a glutening at the time I went in. They wanted to put me on Metformin right away but I decided to modify my diet first. Of course I am gluten free but I also cut out all sodas and strictly limit sugar and don't go nuts with carbs. To make a long story short I have not had a morning sugar over 85 in 4 months. If I were you I would get on the diet and stay on it, it really is a healthy diet and you don't need a diagnosis to be on it.

FeedIndy Contributor

I don't know if it was me you were talking about, but I do have a toddler with celiac. Her favorites are fresh fruits-bananas and applesauce mostly. I buy a lot of Del Monte or Dole fruit cups-gluten free without the price. She also likes cheese cubes-Kraft makes pre-cubed cheeses and they often go on sale. Lunch is often baked potato or canned veggies with some fruit.

As for gluten free replacements, she loves Gorilla Munch cereal by Envirokidz. It is organic and gluten free. My older girls like Fruity Pebbles on occasion, but I don't give my youngest much processed sugar if I can help it.

Mrs. Leeper's animal pasta has been a hit-mix in some pasta sauce and you have gluten free "spaghetti-o's" for lunch. For pasta, we love Tinkyada here-the whole family eats it for ease of cooking and even DH (the only one without any issues) likes it.

We tried Gluten Free Pantry sandwich bread mix and it was decent, but not enough so for the price and effort. I do buy Ener-G tapioca bread for French toast, but otherwise we skip the bread altogether and either roll up cheese inside lunchmeat or put things in corn tortillas. Chebe mix is good for breadsticks, pizza crust or pigs in a blanket. Their frozen rolls are good too, but I only spend the extra money for special occasions-$6 for a dozen is a bit much for our everyday dinners.

As for snacks, she likes MiDel animal cookies or Nana's cookies. My older girls like Envirokidz cereal bars, but it's not the sort of thing I hand to my little one yet. She likes rice cakes, but there can be cross contamination issues with the mainstream brands. There is a crunchy treat called Baffles that are gluten free and come in caramel, cinnamon, chocolate and cheese flavor.

I hope that helps get you started-we really don't buy a ton of gluten free specialties anymore. I found our budget got out of control and we could do quite well with naturally gluten free foods.

Juliet Newbie

I have a 3 year old with Celiac, too, and, until we hear she doesn't have it, a 15 month old going gluten free as well.

We don't use a lot of bread, either, because of the cost. But when we do, I make the Gluten Free Pantry bread. But for quick "sandwiches" for our 3 year old, we use Real Foods Corn Thins (they taste like popcorn - I think better than rice cakes and as long as it's in small pieces my 15 month old can eat it, too). There are about 26 in each bag and about 4" in diameter, and they're less than $2 at Whold Foods. My son loves them with peanut butter, and we eat them with cheese, sandwich meat, lettuce, etc.

We also get Almond House nut and rice crackers (several varieties, plus or minus $2.50 a box), EnviroKidz Gorilla Munch, Panda Puffs, Koala Krisp, and Amazon Flakes. For my 15 month old, she snacks away on Health Valley Corn Crunch'Ems and Rice Crunch'Ems. They're like Corn Chex and Rice Chex without the gluten. I also have them snack on puffed corn cereal from Arrowhead Mills (doesn't have the hard kernel shell of popcorn and you get it in a plastic bag - normally under $2). You can also get Whole Foods brand puffed rice cereal (less than $3 per box) as a substitution for Rice Krispies (it's also good making the Rice Krispies marshmallow treats with). We also get Health Valley Rice Bran Crackers as a substitute for graham crackers. And for quick, no time meals that nearly any toddler will eat, Ian's gluten free chicken nuggets (they also do a gluten free fish sticks), Tater Puffs from Whole Foods (or Whole Foods french fries that are baked and not fried), and cut up veggies with Annie's Cowgirl Ranch (most of Annie's dressings are gluten free). The Ian's nuggets are a bit expensive, but when you have no time, they're great. You can also find gluten free soy sauce for dipping (sometimes called tamari, but it's the same thing - I even found some at my regular grocery store). If you're near a Trader Joe's, too, they make bean taquitos that my son just loves (and they even have mushrooms hidden in it, so he actually gets some veggies). I also make rice balls with really starchy rice and a little salt - you can use sushi rice or a risotto rice like Arborio (again, Trader Joe's has a great price on this). If I have a little more time, I make my own chicken "nuggets" with gluten-free bread crumbs (made from dried, cheap rice or tapioca bread, parmesan cheese, garlic powder, salt, oregano, basil, parsley), gluten-free mayo & a little mustard. Just spread the mayo & mustard on the chicken and dip in the bread crumbs and bake at 350

sadiesmom Rookie

Thank you so much for the responses. I just went ahead and printed off the posts and highlighted all the ideas. Thank you so much ! I am feeling pretty overwhelmed right now. I was getting ready to make a cake this week and went through all the info on frosting (Duncan Hines) and really got discouraged.

I do have another question if you don't mind. One of the things that Sadie has loved the most was the Gerber Graduate series of toddler foods. In particular she like the meat/chicken/turkey sticks. On the label it says modified corn starch. That is okay, right? I did not see anything else suspect. She also likes some of the entrees (turkey, mashed potatoes) and stews (white turkey). The only thing I see listed is the corn starch. I know the pasta and ravioli ones are out - but I wondered about the meat sticks and the other non pasta dinners.

SHe doesn't eat them alot but - it is something nice to have on the shelf or in the diaper bag for an emergency. I think the meat sticks are like vienna sausages - which I thougth to be safe.

Do you guys know anything about the gerber stuff?

Thanks,

Amy

Juliet Newbie

I don't know about the entrees you mentioned since I haven't seen them myself, but from what I have read on the labels and what others have written before, the turkey/chicken sticks are supposed to be OK. Also, the Gerber Wagon Wheels are gluten free, too.


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



Celiac.com Sponsor (A8-M):



FeedIndy Contributor

Modified corn starch is fine, but if it says Modified Food Starch you need to check the label for the "contains wheat ingredients" warning. There is a Gerber Graduate soup that I found to be fine-chicken and rice-but the noodle ones are all wheat based. I hope that helps!q

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,131
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.