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

New With Questions


Rook's Mommy

Recommended Posts

Rook's Mommy Apprentice

Hello, My name is Addie. I have a 3 month old who we now believe has a wheat intolerance. He has not been tested it was more a trail and error thing. He has been super fussy and has awful gas. He also has had a rash on his face, arms and legs since he was about a month old. I was told the dry skin was because of the dry air in our home. So we lube him up like crazy and got so moisture in the air. No help. To help with his fussiness I was told to give up eggs and dairy. I am breastfeeding. It also was no help. My mother saw a new blip on wheat intolerances. So I called his doctor ( who said I should just switch him to formula. It would be easier on me.) And have be looking on the net. 2 days ago I started a gluten free diet. He seem so much better already. He isn't anywhere as fussy as he had been. And is rash is getting better. It's not as bright. But I am so lost on what I can eat? I know what I shouldn't have, but it's in freaking everything! :o We aren't a well off family and can't afford for everyone to eat something different. But I am not sure if my family will like the food that's out there. Does it taste good? I know I have to read the labels but what should I be looking for. Do they hide it under fancy words?

A few other questions I have are,

Will he always have to be on a gluten free diet? Will he grow out of it? Do I have to look out for every thing or just some of it? My dd has shown no signs of this but should be have her on a gluten free diet as well. Will it hurt her if she is?

Any info you are willing to share I will be so very thankful for.

Thanks, Addie


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Addie, it is not likely that he will outgrow the gluten intolerance. I don't believe you can. It will be much easier for you if your daughter is on the gluten-free diet as well, and there is no way it could harm her. NOBODY needs those gluten grains to be healthy.

All the things that are naturally gluten-free are what you'd mostly cook for supper anyway, like meat, fish, eggs, potatoes/rice and vegetables. And you can thicken gravies with corn starch or light buckwheat flour (I use light buckwheat flour as I am intolerant to corn, and the gravy is delicious). So, there is absolutely no need to cook separately for yourself, you are a busy mother and don't need the extra work. Fruits are also naturally gluten-free.

Keep those specialty gluten-free items for special treats, other than gluten-free pasta. There are different ones out there that are good. If you try Tinkyada you'll find that people won't even notice the difference. Most spaghetti sauces are gluten-free, too.

I don't think that you will spend a lot more money on the gluten-free diet, unless you insist on replacing everything (like doughnuts, cookies, cake, crackers, bread, bagels etc.) by officially gluten-free items. Which isn't a good idea anyway, since gluten-free junk food is even higher in sugars and hydrogenated fats than regular junk food.

tarnalberry Community Regular

Meats, fruits, vegetables, eggs, legumes, and many grains are gluten free - naturally. There's no reason that everyone can't eat together. (I cook for friends often, and it's always gluten and dairy free and everyone loves it.) Keep things simple, and realize that packaged products are going to be the difficult ones, but whole, naturally-gluten-free foods are the way to go. It can get expensive to always go that route if you're not used to it, but focusing on the items that give you the most nutritional bang for your buck to base your meals on (beans and rice, for instance) and then build on them with in-season (and cheaper) fruits and vegetables, and then a small amount of meat.

TCA Contributor

I went gluten-free while breastfeeding my daughter and was amazed at the difference in her health. It was a miracle for us. Since then, my son did a gluten-free trial and also had miraculous results. I breastfed her for 16 mos, a year of which i was gluten-free. There is a link in my sig line on how to get started on a gluten-free diet that would be very helpful for you. We have a gluten-free house, but started off with just me being gluten-free. I'm not a picky eater at all, so I just stuck with meats, veggies, fruits, and lots of peanut butter. My son is very picky, so I now order a lot of gluten-free items in bulk to save $$$. amazon .com is a great resource. I recommend anything by Pamela's, Gluten Free Pantry, cause You're Special, or Chebe. I haven't been dissapointed by those brands yet.

Feel free to PM me with questions. I've been there and will be glad to help anyway I can! I"m glad he's doing better and WELCOME!

Kibbie Contributor

My daughter was 18 months old when she was diagnosed with Celiac disease and our entire family went gluten free (mostly My husband and I don't worry about being gluten free when we go out but its only 1 time a month so we are really mostly gluten free)

I was overwhelmed with information and scared out of my mind that my daughter wast not going to be able to enjoy normal foods and such. I also found a lot of bad information on the web! After nearly 4 months now I am confident that I can keep her happy and healthy on a gluten free diet with out having her miss out on amazing foods! You are at the right place for good information and in a month or two you will be an expert and confidant that you can handle this gluten free stuff!

I've started a gluten free blog (at the request of my daughters Nutritionist) so that other moms who are having to switch over to gluten free can see what its really like.... the link is at the bottom of this msg. Its not chalk full of information but I do have a post there with my pantry list, my fridge, and freezer list. Plus a list of gluten free foods that I have come to love! Maybe that will give you a place to start!

I also highly recommend the book Gluten Free Living for Dummies... its a quick easy read full of helpful information. There are other wonderful and better books out there but this one is a super quick and easy to read... you don't have to read it all in one sitting! So for those of us who are short on time this was a great place to start.

Hope this helps!

Rook's Mommy Apprentice

Thank you all so much for your replies. They really helped. I went to TCA's list. And took many notes. On the back of a guide to shopping I found on the net. I also went to day to the book store and got Living Gluten Free for dummies. I am set to read it tonight. And tonight we get the gluten free pasta. Wasn't bad at all. Kinda taste corning. But not bad by any means. I also got dd so gluten-free rice crispies of sorts.

As for my ds, he is doing even better today. His rash is gone and he is HAPPY!!!!!!!!!!!!!!!!!!!!!!! I can't believe it. I am so over the moon right now. I was to the point where I was getting depressed because the only time I got to hold him was when he cried. When he was happy I had to give my attention to my dd. I am so looking forward to the future. This is going to be wonderful.

Also we have made the decision to become a gluten-free home. I will let them go through the crap we have. ( I can't waste food.) The we will be gluten-free. I am looking forward to being a part of this community. Thanks Again.

Addie

TCA Contributor

I'm so glad he's doing so well. Life will get better all the time!


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



Celiac.com Sponsor (A8-M):



plantime Contributor

Addie, I'm so glad Rook is doing so well! At his age, the change to glutenfree means that he will have a much higher incidence of a happy and healthy life!

Rook's Mommy Apprentice

I want to thank you all again. You have made my switch much easier. You are all so kind. I wrote a novel on the family board, I won't do that again. :P But I do want to tell you how much you've helped. The change in my son is amazing and the difference in me is shocking to say the least. I wish I'd know about this years ago.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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.