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

So Frustrated!


ptkds

Recommended Posts

ptkds Community Regular

My dd#3 is about to turn 3. She is in speech therapy through ECI (Early Childhood Intervention). When she turns 3, she has to start in the public school system to continue speech therapy. They want me to put her into head start in the fall so she can be around other kids her age because that would help her the most. So I finally got to talk to the Head Start director today. She told me that THEY would have to supply her lunches and I can't send her lunch with her :angry: She said they would "accomadate" her dietary restrictions. I asked her if they would buy new pots, pans, utensils, ect., and she couldn't really answer me. Then I told her she can't play with play dough, and she said that they always play with it, but they would "try" to avoid it around her :unsure: . Then she pointed out that kids often reach over to others food trays, which means they wouldn't even really pay attention to her during meal times to make sure she doesn't share! So, basically, Head Start can't take her. That director sent me to the Elem. school to look into PPCD for her, but that program is for more challenged kids with bigger medical problems. My dd only has a mild speech delay. Then I went to a day care that has a preschool run by the school system. I hate the place. When I walked in, NO ONE came out to check out who came in. I had to go into a classroom to get someone's attention. She finally got someone else to come out, then I heard her yelling at the kids (who were less than 2 yrs old) to sit down. While I was talking to the lady about enrolling my dd, another group of kids and their teacher walked in, and she was yelling at the kids as well. When she was gone, I told the other lady behind the counter that I do not want my child talked to in that way. She told me that lady woulnd't be my dd's teacher. I wasn't too comforted. But she can bring her own lunch and they are familiar with food allergies.

I just don't know what else to do! My dd needs to be in a classroom environment, or at least around other kids her age on a regular basis. I can't afford a private school, plus she wouldn't get time with a speech therapist. Then it might be harder to get her into Pre-K when she is 4. I don't feel comfortable with the day care/preschool I went to today. Anyone have any advice? I have to get her into something, but she will only be 3, she has a very limited vocabulary, and she doesn't understand that she can't eat certain foods.

HELP!!


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

Could you get a 504 plan for HeadStart? I think it is completely unreasonable that you can't send food with your daughter - it's obviously the safest option. No way will they be able to cook for her. Not that you want to send her there since they're only going to "try" to get it right. Would a 504 or IEP allow her to just use the speech therapy part and not attend the rest of the day? Not ideal, but it might work.

Seems like your best option is the elementary school even though she won't be as medically challenged as the other kids. Would the other kids' health problems affect the quality of your daughter's education? If not, I'd follow up with that one.

Are there other activities she could do to be around other kids? Sports or play groups or something?

dandelionmom Enthusiast

Head Start is a great program but they aren't very helpful when it comes to the kinds of special situations our kids need. Look into some other preschools (ours is only a couple of mornings a week so there's no lunch to worry about and they're really good about managing her snack most of the time and they were fine with me sending in gluten-free playdoh for the whole class). Or maybe consider finding other group learning opportunities that are naturally gluten-free for her like story time at the library, dance classes, music classes, etc.

gfpaperdoll Rookie

where is your child during the day now? Do you work? How long has she been gluten-free? Is she also dairy and soy free?

There are computer programs that interact with children & the child talks back etc & you can monitor that if you are home with her during the day. There are other things that you can do to help her. I would also get her a tape recorder. & I would video her & let her watch them & then practice the words & video her again...

Are you reading out loud to her everyday?

My granddaughter that is now 10 had a speech problem & had to get special classes but it was during the regular school day... (she has two DQ1 genes...) she is fine now...

okgrace Apprentice

I can understand your frustration with the preschool/ daycare situation. I have had to cut way back on my hours as I am unable to find suitable childcare. I am an OT and I go into a Headstart once a week during lunch time to help a boy with self feeding. I know there is a child in there who has food that is for her only and I think they are good about making sure she doesn't get an other food. I would be very concerned about cc. The kitchen staff aside, at the heaadstart I go to all of the children share a playground and the equipment on it. It would be difficult to make sure the whole headstart washed their hands well after eating or using play dough, which is everywhere.

One good thing is Headstart tends to be proactive and accustomed to working with kids with special needs.

Playgroups or playdates or a preschool for children with special needs may be better solutions. My daughter attends a school for children with some type of developmental delay. THey are used to making accomodations for children although it is still tricky as I am just realizing how careful we have to be.

Hope you find something soon that you feel comfortable with.

Momof3boys Newbie

I am a speech therapist in an elementary school. But I am also a mother of a 5 year old with OT and Celiac's. So at his IEP I am having a nutritionist, nurse and all of the other participants as well. I would contact the speech therapist or diagnostician who did the initial testing and as part of the IEP I would write in that your child can not have gluten and needs special permission to bring in own lunch. I would be sure to mention that they can't with hold a "Free and appropriate education" or "FAPE" from your child because of a disease. I would mention that that would be against federal law. I would push for your child's health and make them make the accomodations. Go to through the special education route and they can tell Headstart what to do! I would not let them push you around! You just have to educate yourself with the law and then let them know you are aware of your child's rights. I hope this helps! Tell them you would be glad to have a doctor's note if they wish.

ShayBraMom Apprentice

Exactly! I'm totally with her! You have a parental right and that includes that your child gets a good education in a safe enviroment. It is rediciulus that you cannot provide your own meals for her! My son is speechdelayed as well, he has an IEP and he 's been in a special Preschoolprogramm 4 times a week for 3 hours since he was almost 3. thsi summer he will graduate into Kindergarde, again with an new IEP. Special needs kids do have special needs and if a school offers programs for those kids they have to accomodate. Nobody aks them to accomodate her diet but to let you send your own stuff and them keep an eye on it! The 8 yr. old of my best friend, he's deadly allergic to even traces of peanuts. He brings his own foods too and on tuesday's where they used to have peanutbutter-sandwiches for all the kids as lunches, he sat separate and so on. Hear, hear, this year they do not have Peanutbuttersandwiches on their plan naymore...........

As Momof3boys said, dopn't let them push you around. they HAVE to accomodate your daughter in one or the other way by federal law. Get yourself very well educated, get printouts aobut the law, get a not from the Doctor and so on. Fight for your daughters right! since your daughter is pseechdelayed AND has these dietary restricitions she has the right to an IEP, basically a contract where you guys with the teachers, schoolnurse and so on put down the goals for your daughter, as qwell as the restrictions she has, and that incldues food! If they don'

t keep their part of the contract, and she gets repeadetly sick because they don't watch her, they get in big trouble if you blow the wistle!

Talk to ECI (my son used to be with them as well startting 15 month old) and how to psuh for an IEP. Them are usually setting up the meetings and everything that leads up to one. also aks them if they have anything talking about parentlal, law, if they know any websites where you can get yourself smart and credible info! Good luck!

I am a speech therapist in an elementary school. But I am also a mother of a 5 year old with OT and Celiac's. So at his IEP I am having a nutritionist, nurse and all of the other participants as well. I would contact the speech therapist or diagnostician who did the initial testing and as part of the IEP I would write in that your child can not have gluten and needs special permission to bring in own lunch. I would be sure to mention that they can't with hold a "Free and appropriate education" or "FAPE" from your child because of a disease. I would mention that that would be against federal law. I would push for your child's health and make them make the accomodations. Go to through the special education route and they can tell Headstart what to do! I would not let them push you around! You just have to educate yourself with the law and then let them know you are aware of your child's rights. I hope this helps! Tell them you would be glad to have a doctor's note if they wish.

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.