Jump to content
ACN Latitudes Forums

GF diet helped, but then stopped. Input?

Recommended Posts

My son had his first PANDA symptom flair (upsurge in severity and frequency of tics and sudden onset of OCD/ADD/anxiety, behavioral regression, moody) in June 2017. He didn't get a blood draw for strep until October. It was positive. We treated with a 10-day round of antibiotics and swabbed for strep 2.5 weeks later. It was positive. We did another 10-day course, which was complete in mid-November. He improved a lot--but not fully--and has had several negative throat cultures. I should note here, that his doctor recognizes that an untreated infection can cause neuro problems, she treats using strep protocol.

I tried a month-long dairy free diet in November with no change upon deletion or reintroduction. I did the same with gluten in January. Every single tic and symptom he had completely went away within three weeks. His psychologist was blown away. I was stunned. He was happy for the first time in months and felt "normal." He was delighted and didn't even mind the restrictions. We kept him off gluten until mid-February. We reintroduced it and everything came back within a week, not to the point of the initial flair, but he was ticking, couldn't concentrate, was very moody/somber and his ocd came back. I eliminated it again, figuring that I found a huge trigger for him. This time, it doesn't seem to make a difference. he's been GF again for well over a month. I am not sure he has improved much at all. maybe his tics are a little less. Would it be worse if he was eating gluten? I don't know! He said it may or may not be helping. He can't tell. He did have a cold in late February (and had a strep test, just in case -- was negative).

Any thoughts?

Share this post

Link to post
Share on other sites

I am so sorry that you had not received a response to this question.  I myself didn't happen to notice it over the last week even though I am on briefly a few times a week.  Has he changed over this past week?

My first thought is that perhaps he has another trigger that he was exposed to at just the right time.  How far-fetched that theory is depends on how long you left him on the "re-introduce gluten as a test" before you took him off it the 2nd time.  If that was only for a day or two, it almost seems like too much of a co-incidence.  It would still be possible, but it is a wild enough co-incidence to put doubt in my mind.

Then the other possibility I draw from my pharmacist sister, who says that she often has patients that try a drug (we were talking about SSRI's at the time, so I am not sure how broadly this brush paints), get good improvement from it, then after some time (months, I think), get tired of its side effects and go off for a while.  Then, when they want to try it again because of the symptoms, they find it doesn't have the same effect as it did the first time.  This is common enough that she hears about it regularly.  Who can understand the mechanisms involved in that?  If a food has an effect on neurological/mental illness symptoms, then can it act similarly to a drug that has a neuro effect?  It seems plausible to me, but like I say, who can explain the details of that kind of interaction?  This theory offers no obvious next step.

Share this post

Link to post
Share on other sites


Bobh... Thanks for your response. I am stumped. With the exception of those 7 days of reintroducing gluten in mid-February, he's been GF since Jan. 1. He is still ticking and experiencing OCD (not anywhere near the level of June-November, but it is definitely there and effecting him).

He did two rounds of antibiotics in the fall, with the last ending in mid-November.  He seemed to start to  improve in the last week of December, though not to 100 percent. His gluten elimination diet started the first day of January. Everything was gone by mid-January ... new tics, old tics, anxiety, concentration issues, near constant hopping, fear of certain foods, but most importantly he acted like himself and smiled and felt good for the first time since this all started in June.

Maybe the timing of the  elimination diet just went perfectly with a fall of strep antibodies (due to antibiotics) and he was just going to get that good, regardless of his diet. But It seems very coincidental that it all came back when we reintroduced gluten. I did take him for a strep test to rule it out. When he went, he had a low-grade fever and a red throat so was fighting something, but the strep test (rapid and culture) was negative. Maybe a combo of gluten and a cold (or just a cold) made him flare. Maybe he is moving from a transient ticker to tourettes and this is just going to be how he waxes and wanes.

You and your sister have a point about medicine (and treatment in general). What works once doesn't always work again.

Share this post

Link to post
Share on other sites

That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense.  A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Announcements

    • Administrator

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator


      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010