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18 Comments

  1. 1

    Molly

    Hey about the concerned pregnant lady with celiac husband. Make sure you are completely gluten free so your breast milk is. Breastfeed as long as possible. Incorporate collagen and gelatin (bonebroth, etc) to seal your babies gut from the get-go. Introduction of foods- delay gluten, even GF oats (20% of celiacs react to GF oats- cross-reactivity). First gluten- make it sprouted, or sourdough that has the enzymes present for digestion. ~LoveStockTallow Mama

    Reply
    1. 1.1

      Molly

      Also get the genetic test ASAP so you know your babies predisposition. Maybe no DQ2 or 8 present and there is way less risk. My kids were no so lucky in that department

      Reply
      1. 1.1.1

        Kerry

        There have been a lot of studies in recent years about children and celiac disease, especially in terms of heritability, introduction of gluten, amount of gluten, and genetics. My son is a subject in an ongoing study which is primarily for diabetes but has been uncovering a lot about celiac as well. It’s how he was first diagnosed.

        I would recommend going to pubmed online and poking around. Look for the TEDDY study and celiac, and look around a bit more as well. There’s not a lot that’s solidly known, and you’ll only find about 5-12 good studies, so it shouldn’t take too long. From what I’ve read: there’s no need to restrict gluten or delay gluten introduction, and the amount of gluten doesn’t matter. There is a lot of promise for the genetic testing: children with a certain genetic profile have something like a 25% chance of developing celiac autoimmunity (that is, a positive blood test, independent of an endoscopy) by the age of five, and even higher by the age of twelve. I personally have made the decision to feed my daughter a gluten-free diet if her blood tests come back with that genetic profile, because to my mind, it seems like in that case, celiac is only a matter of time. Otherwise, we’ll probably just have her blood screened for ttg yearly.

        Reply
    2. 1.2

      Trish

      My experience regarding small children and introduction of gluten, as well as having school-aged children with Celiac.

      Breastfeed as long as you can, and as long as the decision makes sense for your family. My 7 year old nursed for over 20 months. By the time I weaned him, he was down to just bedtime feedings. My 2 year old was only nursed for 4 months, as I had surgery and was on narcotics for an extended amount of time.

      Eat a good diet, especially while breastfeeding. It will nourish your body, help you heal after childbirth, and nourish your child. It’s always a good idea to feed yourself well , but especially after birth, whide breastfeeding, and when you have digestive issues. ( I fail at this sometimes, but I try out get back on track as soon as I can.)

      Find out if your child has a genetic risk for Celiac. You may get lucky and your children may not have the gene. All three of my boys have one copy, plus one copy labeled as disposing them to NCGS.

      Remember that little children like to put their fingers in their mouths. They also like to put their slobbery fingers into others’ mouths. This has lead to my mom being very ill after my middle son, who had been fed cookies by my well-meaning grandparents, stuck his fingers into his mouth and then immediately into her mouth. This may need to be considered before deciding to introduce gluten.

      As for my kids, when the oldest was diagnosed he went completely GF. Shortly thereafter, our entire house became GF. My youngest was still an infant, so he has never had much gluten. My middle child was a young toddler, and he has been GF almost his entire life. We found out with him that barley containing baby cereal upset his stomach, so we cut out all gluten until he gets older ( except for the episode mentioned above. That box of cookies lingering in the pantry was immediately thrown away.)

      My younger two will continue being GF until they start school. Then they will be exposed via school cafeteria food, so we can keep our house completely GF for the health of the three Celiacs we have currently. (My mom, my oldest son, and myself.) If the younger two begin to show any symptoms, I’ll have them referred to my older son’s pediatric GI and we’ll begin testing.

      As for my older son’s food at the school, I send all his food. Breakfast, lunch, and snack. Our school is not properly trained in making sure his food is 100% GF, so I don’t risk it. I know by law I could force them to accommodate him, but I feel safer this way. It’s a personal choice, and if we had other students in the school that had to eat GF food, I might consider letting him eat cafeteria food. This way I KNOW his food isn’t cross-contaminated. I do send a letter to the other parents of his classmates at the beginning of the year, as well as a very detailed list to his teacher of foods he can and can’t have. I include things like modeling clay, pasta for art projects, etc. on this list, with an offer to provide safe alternatives if needed. We have a 504 in place. I make sure I’m involved with planning any food events for the class ( pizza parties, Halloween treat bags, Christmas party food, etc.). His teacher lets me know if anyone is bringing cupcakes for a birthday, so I can send him a safe one. It takes a lot to get used to all this, but for us it’s worth it.

      Reply
  2. 2

    D. Sorrell

    To the first questioner, I’d say if you can’t afford to move out, set up an alternative “kitchen” in your room. Get a dorm fridge and microwave and cook your own foods.

    It does get better. It does feel normal to me now, 7 years in and I do not feel deprived of anything. As a benefit, I have now become a much better cook. :-)

    As diseases go, this one’s not so bad because there’s a CURE that is available to us all. Just don’t eat it. I know it’s not easy all the time, but it’s not some 10,000 dollar drug that has to be infused, it’s not radiation treatments, it’s not a death sentence.

    Reply
  3. 3

    The Atomic Mom

    Oh my goodness … go on The Doctors, give them the straight stuff on celiac! I swear that stupid show plays in every waiting room I’m ever in … such a lowest common denominator show, but perhaps you could bring it up a bit.

    Reply
      1. 3.1.1

        Debi from Tampa

        Yes, go on The Doctors….. that would be awesome!!! Do it!! Do it!! Do it!!

        Reply
  4. 4

    Sarah

    To the Baltimore, MD letter writer, there are 100% GF locations in Baltimore. Check out One Dish Cuisine in Ellicott City, Points South Latin Kitchen and Sweet 27.

    Reply
    1. 4.1

      Sarah

      My apologies, I misread the letter context. In regards to celiac safe hospital meals, I would suggest contacting the staff at One Dish Cuisine in Ellicott City, as their website notes that they supply meals for local hospitals. They are super friendly and helpful (

      “It was a tough decision, but the success of the café meant she could no longer supply meals to grocery stores or restaurants, but ODC still supplies meals for local hospitals.”

      Reply
  5. 5

    Tara

    Maybe the best of things! And no good thing ever dies ;)

    Reply
  6. 6

    Else

    I’m the Celiac in the family and was only able to breastfeed for five months before my supply completely dried up. I’m a big supporter of breastfeeding but also not convinced it is the magic protective bullet. My sister and I were both exclusively breastfed for a year and i still ended up with Celiac and her with Crohns. I read a lot of conflicting information about when to introduce gluten and we ended up doing it around 10 months. We keep a gluten free household so my husband would feed our son food with gluten when at other people’s houses. Now my son is two and eats gluten at daycare but gluten free at home. So far no signs of Celiac but I think it’s still something we have watch for for his whole life.

    Reply
  7. 7

    thetxlady

    Dear thought about suicide,
    If thinking about the gift that knowing for sure FINALLY you have celiac doesn’t help then also check thyroid. I was told for years i was every flavor of crazy….the only thing that was crazy was docs prescribing pills full of flour, telling me “low thyroid levels are normal” & my personal favorite. ..”it’s all in your head”.

    We get it here…find a good naturopath (most likely near dc) & have them check you out. Probably more going on than celiac

    Reply
  8. 8

    Heather

    To the person that has been having trouble keeping weight on; I just wanted to let you know that I had the same problem until I started drinking Vegiday protein shakes with my breakfast. I use coconut milk to blend it, I also add a banana & some strawberries, since I have been drinking them my weight has been holding steady at 120 lbs. The shakes are vegan & allergen free. Hope this helps.

    Reply
  9. 9

    Greg

    The idea that Coors could brew a good gf beer-heck their REGULAR beer is piss. Long before celiac I drank one one time and that was that.

    Reply
  10. 10

    Sharon

    To the 67 year old, I may be WAY off base, but if you’re having increasingly bad reactions to food, you may want to look into mast cell issues – whether it’s mast cell activation syndrome or mastocytosis. It’s possible your anxiety and depression are coming from food reactions. Also, about your stomach perforating, if the doctors don’t know why, you may want to look into connective tissue disorders. Especially if you’ve always been more flexible than normal for your age. Ehlers Danlos is what you should google. (People with Ehlers Danlos are more likely to have celiac than the average population possibly because the stomach is chock full of connective tissue.) Also, Ehlers Danlos and mast cell problems often go together. Good luck!

    Reply

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