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

How Long After Starting On A Gluten Free Diet Until The Behaviour Gets Better?


Arginin

Recommended Posts

Arginin Rookie

My son is 4 yrs old and started on a gluten free diet (probably not a 100% yet, still learning and adjusting) 6 days ago. He has had bad behavioral issues particularly right after his stomach has been problemtic. I am know wondering what to expect with regards to how soon one can see changes in his behavior. Just to have some realistic expectations - but also I am eager to see my son get better. I will appreciate any input!


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



Celiac.com Sponsor (A8-M):



stanleymonkey Explorer

we are 2 days in with our 35 month old, and she is so much better already, she has gone from being aggressive whiny and clingy to almost back to how i remember her 2 yrs ago.

today iwen to fold the laundry and she happily played by herself instead of crying and following me

when one of her toys didnt do as she wanted, she started to cry and i told her to stop and calm down, normally nothing would work and we would have a screaming fit all day long

she has stopped begging for food and had eaten 3 meals and three snacks, not asking for anything other than the stuff i gave her

she has taken herself to the bathroom and not needed help or soiled herself, she pooped withut the need of PEG

she even helped dress her sister

i guess it depends on how much damage is done, she has dropped a pound in weight in 1 day which i'm sure was mainly water and she is tired, but so far so good

keep us posted

astrologer50 Rookie

My son is 4 yrs old and started on a gluten free diet (probably not a 100% yet, still learning and adjusting) 6 days ago. He has had bad behavioral issues particularly right after his stomach has been problemtic. I am know wondering what to expect with regards to how soon one can see changes in his behavior. Just to have some realistic expectations - but also I am eager to see my son get better. I will appreciate any input!

my recovery was almost instant, within 3days 90% cured within two weeks, most symptoms had gone away completely....

look to eliminating other things like dairy products, eggs. quite often the body become intolerant with few other things to..

elmination diet is the only way. Which hidden gluten in sauces, gravies etc...

  • 2 weeks later...
eluvsphish Newbie

For my 3 year old son, I noticed major changes within 3 days. Within 2 weeks, he was back to being his happy-go-lucky self that I had known the year before. But, you have to be very strict. Now that we have been gluten free for almost 5 months now, I can tell the minute he has been cross contaminated. He gets crabby, argumentative, and ready to fight.

totalallergyman Rookie

the experience with the gut is after stopping gluten foods (obvious ones like wheat etc, grains)

i got a lot better, but not 100%, and here's why:

you think the gut is auto-immune destroyed?

then there is a leaky gut syndrome.

so food normally passing out which has already had it's energy taken from it,

is now 'rotting' in a sense, having some toxic constituents,

and a leaky gut wall from the celiac damage,

is allowing those waste products into the bloodstream.

i have intestinal cleansing equipment, already built and designed,

so luckily its possible, if i remember,

at the right time when i start feeling 'down' some hours after eating

to do a cleanse to help hurry out and clean out the gut.

i believe this is better until the gut wall is stronger,

and when it is no longer incorrectly-permeable.

totalallergyman Rookie

hmm. it is also my experience that if you 'slip-up' (eat something that you thought was grain-free that you later realized was not) as i recently did, make sure to have some capsules of activated charcoal on-hand, and take one (for someone very small) or two or three (for fully-grown bodies) to help to soak-up/neutralize the effect of the grains.

  • 2 weeks later...
MitziG Enthusiast

Not to discourage you, but it may also be awhile. My son, who is 8 has been gluten free since March. I was SO wanting to see immediate improvement in his depression, panic attacks, hyperactivity, constant stomach pain, foot and leg pain, numbness and tingling, eye pain...but months went by with very LITTLE improvement. I tried everything, nothing seemed to help. His micro-nutrient levels tested normal, except for ferritin. He was put on Zoloft and that made him manic. In desperation, I started him on some nutritional shakes and liquid B vitamins. WHAM. Within DAYS there was a big improvement. A month later, his issues have improved probably 75%. My guess is even though his nutrient levels were within "normal" range, they were still too low for him. If your son does not show improvement soon, please look into nutritional supplements. I hope things turn around for him soon!


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



Celiac.com Sponsor (A8-M):



  • 4 weeks later...
JWSJ Newbie

We saw improvement with both our children within 2 weeks of dropping gluten from their diet.

  • 3 weeks later...
zizypuss Newbie

I have not been diagnosed as being gluten sensitive, but years ago--in my 20s--I felt I had allergies as a result of eating wheat (chronic post-nasal drip, diarrhea if I ate wheat germ or bran) and mostly gave up all wheat for about 10 years, though I didn't realize I also had problems with dairy and some symptoms persisted (mostly a much-diminished form of post-nasal drip and dark circles under the eyes).

Then in 2008 when I was commuting to a workplace where I found it hard to find the kinds of foods that I eat that don't contain wheat, I began eating wheat again. Within six months I started having balance issues; going up stairs my left leg would develop "a mind of its own" and do what it wanted to do, sometimes skipping a step, nearly causing me to fall. The first time it happened I almost freaked out. I thought I was crazy.

I soon learned that I had to walk slowly and deliberately upstairs, thinking about each step and hanging onto the handrail, although in the past I had often skipped steps and was faster going up stairs than most people my age.

I endured the frustration of having a leg that "had a mind of its own" and the only thing that made it tolerable was that it didn't happen with every step and that it only happened on stairs and never on flat ground. So I could continue to go on long walks. But I felt my self-esteem take a dive. I didn't want to go to a doctor because most of my dances with doctors have undermined my health.

When I lost that job and started working out of my house, where I could prepare my own food, my attacks of ataxia began to diminish. It was more of a gradual reduction rather than something that happened immediately. I think it was about 2-3 weeks before I noticed I had days without at least one ataxic episode. Because I live on the third floor I have to go up and down stairs nearly every day.

When I stopped eating wheat I would have fewer episodes and they gradually diminished until 6 months later I was free of any of the balance symptoms. One day I made the connection to gluten or, rather, I wondered if it was the cause. I was fortunate that I had been working in a field of publishing that granted me some medical knowledge and I had heard of ataxia and was able to identify the behavior, though I haven't had any kind of formal diagnosis.

After being gluten free for 4 years and again having no symptoms, I started working at another job and started eating wheat again and my symptoms returned within a few months. I went off gluten within a month of their return. That was about 2-3 months ago and the symptoms are diminishing, but now I have realized I cannot eat oats either. Then a blow has hit us. My father had diarrhea for years and I kept telling him he might have celiac disease (not realizing that I too might have it). He wouldn't listen and his health took a nose-dive, he lost weight and developed other health issues (hypothyroidism). Then he developed balance issues and fell and injured his head. He's slowly recovering in the hospital. I am gathering information for him so that he will be convinced to stay away from wheat. I learned that he had been eating a lot of wheat before he fell because it was the only thing that "helped" with his diarrhea. The doctors have him on a gluten free diet and he no longer had diarrhea after 2 weeks on the diet. And he is 94. They think he will recover. I am hopeful that he can pull through this. I just hope that there isn't too much damage to his brain from the wheat and from the fall.

zizypuss Newbie

I meant to add that I often suspected that my housemate has problems with gluten. She too was always coughing, morning and evening, and has bowel issues for which she takes L-glutamine and she suffers arthritis-like symptoms in her joints. I kept telling her about my experiences with wheat and I think it fell on deaf ears. But while I was searching for transition foods for my dad I found some breads that I tried and I thought she might like and I gave her a loaf of gluten-free raisin bread. She really liked it and decided to try one day off wheat. The next morning no pain in her fingers. I can see the swelling go down. Sometimes the way to the ears is through the mouth.

  • 3 weeks later...
mamaupupup Contributor

Hi there,

We have twins both likely will have final diagnoses of Celiac in about 10 days. One has major behavioral issues (impulse control, irritable, whiney, clingy, etc.) and the other is a total peacemaker/zen kid. Both have positive bloodwork and genes...and both are symptomatic in different ways. We are eagerly awaiting the day 3/20 when we can take them off gluten. We can hardly wait for behavioral changes (and hoping gluten-free will help significantly). Our GIs have said it could be six months...

Thinking of you!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.