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

Adhd As It Relates To A Gfcf Diet


looking 4 answers

Recommended Posts

looking 4 answers Newbie

my 11 year old sons dr has chosen to drastically change his diet along with prescribing medication due to testing that shows him to have adhd. the dr wants him to be on a Gluten-free Casein-free diet. this is a major change as im sure you all know. is this a diet that can be practiced 75%, 85%, 95% of the time or does the slightest exposure to gluten or casein ruin any benefit he may have been getting? is it necessary to send him off to school each day with food to guarantee he doesnt have them? ive seen sites that suggest changing shampoo. it appears that autism, celiac disease and adhd can all benefit from eliminating gluten and casein. does anyone know in relation to adhd or any of these if if needs to 100% free or its useless.

thanks in advance


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

My thought is 100% at all times. Why eat this way 90% of the time (for instance) & not know if it is helping, when you will see results if one follows the diet 100% of the time. Plus if he is going to be 100% & see an improvement why would you want to give-in & maybe let him have gluten goodies & it sits him back. To me that is like being on a roller coaster, ups & downs , HIghs & lows.

I personally would stick to 100% at all times...

I know many children with ADHD & ADD that this lifestyle has changed the child's life. for the better of course.

I would think if after 6 months of a strict gluten-free plan & you see no difference then I would guess it is not working for that child.

blessings

looking 4 answers Newbie
My thought is 100% at all times. Why eat this way 90% of the time (for instance) & not know if it is helping, when you will see results if one follows the diet 100% of the time. Plus if he is going to be 100% & see an improvement why would you want to give-in & maybe let him have gluten goodies & it sits him back. To me that is like being on a roller coaster, ups & downs , HIghs & lows.

I personally would stick to 100% at all times...

I know many children with ADHD & ADD that this lifestyle has changed the child's life. for the better of course.

I would think if after 6 months of a strict gluten-free plan & you see no difference then I would guess it is not working for that child.

blessings

thank you for the reply. i am now in day two of this new diet with my son. he is a very picky eater to begin with. i would do anything to help him, including getting rid of all gluten and casein in the house yesterday. i want to make this as easy for him as possible at the same time. if he can have a slice of pizza at a birthday party once a month i want to let him. if that will set back all the positive effects then he wouldnt have that pizza. im reaching out to find as much about this as possible and how cautious and strict we need to be. thank you.

ranger Enthusiast

I agree with mamaw - keep him at 100% Gluten-free Casein-free for a lonf enough time to see results. I don't know that much about adhd but some children with autism resond well to the diet and some don't. If it were my child, I would try anything safe to help him. And, you can make almost anything gluten-free. He doesn't have to give up the pizza, but he'll probably have to bring his own! Good luck.

CMG Rookie

I had the same questions, and my answer, too, is 100% gluten free.

I put my daughter on the gluten-free diet for intestinal symptoms (she was already CF because of milk sensitivity). Her physical symptoms improved quickly, but I also was stunned to see a significant improvement in her behavior. We were just beginning down the road of ADHD evaluation. After a year on the diet, I did exactly what you just suggested...let her have the pizza and cupcakes at the birthday parties. I didn't want her to be different from the other kids. She seemed fine afterwards. So we did it again, and again... There was never an "AHA" moment that this is harming her. But over months I noticed a gradual decline in her behavior until it was becoming unmanageable again. We went back to 100% gluten free and back to good behavior and focus. I have reviewed the issues with her teachers, she takes her lunch to school with her every day, and she takes gluten-free pizza and a gluten-free cupcake to every birthday party. Once you get into the routine it doesn't seem like so much work - just takes organization.

Her new doctor (we moved) does believe that she is celiac - based on dietary response, increased growth rate since going gluten-free, and we now know that she has the DQ2 gene.

Did you have your son tested for celiac before going gluten-free?

Let me know if you would like me to share some information about managing the birthday parties.

MaryJones2 Enthusiast

I agree with everyone. It's really an all or nothing thing with this diet. Also, someone else mentioned testing for celiac. You might considering doing that before continuing with the diet because once you start the diet you will almost certainly loose the ability to properly diagnose celiac without a painful reintroduction period (6-8 weeks of gluten ingestion).

This is a helpful site too: Open Original Shared Link

The site is a little difficult to navigate so you might also find this page useful: Open Original Shared Link

Welcome aboard. Let us know if you have any questions about the diet!

lizajane Rookie

we took my younger son off gluten after i was diagnosed. within 3 days, he slept all night, didn't have any more nightmares, woke up happy and remained incredible pleasant ALL day. he is no longer irritable or defiant. it hasn't been long, but i am dying to see if he gains height, as he is MUCH shorter than his brother was at the same age (but still 50th %ile) when he gets gluten, he is a BEAR the whole next day. irritable doesn't even describe it!

we took my older son off gluten and saw NO change at all. we only did it for a week, but since we saw not ONE symptom of his ADHD change, we decided we would not continue with him. he does not have any symptoms of celiac, whereas my younger son did, so he would require a diagnosis for us to try it for several months. (and he was tested-blood test- and it was negative.) he has severe ADHD and is on meds at age 6. i think because he has a true ADHD diagnosis and not just a tendency toward hyperactive behavior, a diet change would not work as well for his as it would for others. he is hyperactive every single day all day no matter what he has to eat.


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

From my experiences, everything I've read in the past few years and from hearing the many experiences of kids and adults with ADD ADHD that have shared on this board, I think that there are various contributing factors/triggers even sometimes in one person. You can read my signature to see what is up with my son. After the allergy testing we did a month and a half strict gluten-free diet trial and his eczema went away and skin healed and cleared up and didn't come back. I made sure we gave it sufficient time to do that. When we re-introduced gluten, the eczema came back. So it was clear to us then that gluten was part of the picture. For a long time we had him completely gluten-free at home and gluten-free lunches sent to school and only got gluten at school parties, birthdays and the very occasional meal at a restaurant, but that was enough to keep his eczema going. I finally got him tested through Enterolabs because I knew that we all needed that in order to go completely gluten-free for good. We haven't eliminated or done trials with the other foods that he reacted to-nuts and soy. His overall allergic load is certainly a contributing factor as well. I wish that I could say that we've seen a dramatic difference. We haven't but that doesn't mean that there hasn't been significant change and his symptoms. Behavior wasn't dramatic to begin with, that's not to say that he didn't have significant problems. Or maybe it's all been so gradual that we haven't really taken notice as much as we should have. I doubt many people could recognize the change that took place with me when I eliminated gluten and had my concentration and memory improve significantly. One small clue with my son is that he was thoroughly tested before I went gluten-free and again with the same test a year after I had gone gluten-free(which would be 2 years after the initial test) and switched the family diet over to mostly gluten-free(for those 2 years). The test results showed marked improvement-not where he should have been but still significant enough for the sceptical psych. to make note of it and wonder(in a wondering and not fully doubtful way) aloud if it was a true improvement. Knowing what I knew then about gluten and it's effects I thought it very well could be. We may not have uncovered or managed other pieces of the puzzle that need to be addressed. Funny thing, before the whole gluten-free trial and allergy testing the words growth hormones and no longer on the same curve cave up at his physical and his doc. just dismissed the changes in his growth after looking at his very petite mom and saying he might just be small like mom and not be on that same tall and thin growth track that he originally was. When I brought up growth hormones she said, he'll be fine. Hmmm...really? He seems to be growing like a weed now! It will be interesting to see if he jumps back onto that original curve next time he has a physical.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    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.