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Psychotic Symptoms Went Away


ChessFox

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ChessFox Apprentice

After about two days of not eating gluten my generalized anxiety, mood changes, and paranoia went away. It look slightly longer for my stomach bloating and pains to go as well. The anxiety started in middle school and the paranoia roughly at 28 years of age. It took me years of investigation to arrive at this point of discovering personally this link between psychosis and gluten. My hope is that with time a gluten exposure will only cause mild levels of mental distress and preferably no longer lead to paranoid thinking. Did anyone notice perhaps milder mental distress compared to before after months or years of living gluten-free?

I am currently following Doctor Alessio Fasano´s diet.

When I go the restroom, there appears to be chronic signs of malabsorption. It seems fairly common considering the other posts that I have read here. Does this tend to go away?


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trents Grand Master
2 minutes ago, ChessFox said:

After about two days of not eating gluten my generalized anxiety, mood changes, and paranoia went away. It look slightly longer for my stomach bloating and pains to go as well. The anxiety started in middle school and the paranoia roughly at 28 years of age. It took me years of investigation to arrive at this point of discovering personally this link between psychosis and gluten. My hope is that with time a gluten exposure will only cause mild levels of mental distress and preferably no longer lead to paranoid thinking. Did anyone notice perhaps milder mental distress compared to before after months or years of living gluten-free?

I am currently following Doctor Alessio Fasano´s diet.

When I go the restroom, there appears to be chronic signs of malabsorption. It seems fairly common considering the other posts that I have read here. Does this tend to go away?

Welcome to the forum community, ChessFox!

Have you officially been diagnosed with a gluten disorder?

Complete healing of the small bowel can take two years or more. How long have you been eating gluten free? I would add also that there is a learning curve when it come to eating gluten free. Learning how gluten is hidden by terminology in prepared foods and learning how it unintentionally gets introduced into foods through cross contamination. Several recent studies have shown that most people who believe they are eating gluten free are actually eating a lower gluten diet than before getting on the bandwagon. 

Scott Adams Grand Master

Yes, but if you have celiac disease it can take an average of two years for your gut to fully heal, and it will only do so if your diet is 100% gluten-free.

Also, this part of your post has me concerned:

Quote

My hope is that with time a gluten exposure will only cause mild levels of mental distress and preferably no longer lead to paranoid thinking.

To me it sounds like you intend on eating gluten, but have celiac disease and/or gluten sensitivity. If you have either condition you should always avoid gluten, as both are lifelong conditions.

 It's great that the gluten-free diet has eliminated your symptoms, and I've always wondered how widespread gluten sensitivity is among those with mental illness. I suspect it's pretty widespread, but like many symptoms, doctors tend to focus on treating the symptoms rather than finding a root cause (or at least eliminating a possible root cause).

We have many articles on this topic here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/schizophrenia-mental-problems-and-celiac-disease/

and this one is recent:

 

ChessFox Apprentice

Thank you so much for the responses!

Sorry, I meant to say "accidental" gluten exposures. Thanks for your concern.

Yes, there is a steep learning curve. I am on day 10. To the best of my knowledge, I have been 100% gluten-free. I keep a journal of symptoms. So far, I have not noticed any changes. I check all labels and have looked at all my supplements, medications, and grooming products.

I was thinking about doing genetic testing first. The blood tests and biopsy have me concerned, as of this moment, because of the gluten challenges. I see the enormous importance of them. It is only that among all of my symptoms the paranoid thinking can be the most debilitating. The short time on a gluten challenge for the biopsy does seem doable as long as I have support nearby.

My Uncle has been gluten-free for years. He said his hemorrhoids are gone.

trents Grand Master

The genetic testing cannot demonstrate you have an active gluten disorder, only the potential for it. Most who have the genes don't develop active celiac disease. It takes some kind of triggering stress event to turn the genes on so as to produce the active disease.

RMJ Mentor

If you’re only on day 10 and could have the blood tests done within the next few days the results would probably be accurate.  For most people it takes longer than 2 weeks for the antibodies to return to normal.  If you got a positive result you’d know you had the celiac antibodies. However, if you got a negative result, you couldn’t be sure if it was due to being gluten free or not.

In most states in the US you can order some of your own lab tests online then go in for a blood draw. That could be quicker than getting in to see a doctor and convincing them to order the tests.  

ravenwoodglass Mentor
On 4/23/2021 at 12:58 PM, ChessFox said:

After about two days of not eating gluten my generalized anxiety, mood changes, and paranoia went away. It look slightly longer for my stomach bloating and pains to go as well. The anxiety started in middle school and the paranoia roughly at 28 years of age. It took me years of investigation to arrive at this point of discovering personally this link between psychosis and gluten. My hope is that with time a gluten exposure will only cause mild levels of mental distress and preferably no longer lead to paranoid thinking. Did anyone notice perhaps milder mental distress compared to before after months or years of living gluten-free?

I am currently following Doctor Alessio Fasano´s diet.

When I go the restroom, there appears to be chronic signs of malabsorption. It seems fairly common considering the other posts that I have read here. Does this tend to go away?

Welcome to the board.  My celiac symptoms began in childhood after being impaled and having to rescue myself. Gut symptoms were considered normal (yea right) but I had severe DH and neuro symptoms that included balance issues and brain fog.  Since a very short time after diagnosis the only time I am hit with depression is if I am glutened.  The depression is severe but I know now it will resolve within a day. Hang in there and be as strict as possible with the diet. As mentioned it can take time for your gut to heal and if you do experience a return of the psychiatric issues hopefully they will resolve quickly. I am glad those issues went away quickly as IMHO that is a good sign the your brain impact is gluten related. Don't be afraid to consult a therapist to help you deal with all the lifestyle changes that come with being gluten free. If there is a celiac support group near you that also might be helpful as celiac can be isolateing if you let it.


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ChessFox Apprentice

Thank you everyone for the great advice.

I am so happy to hear that your severe depression resolves within a day ravenwoodglass.

Throughout my 20s, I would get extremely itchy red bumps all around my elbows and knees. Perhaps, this could have been DH.

I have also read about two topics in this forum community that relate to me which are short stature and large forehead. That is pretty interesting as well.

When I look at my journal, I did not change anything else in my routine. I took out gluten and dairy at the same time. So I do not know what role dairy plays as of now. I was not expecting the neuro symptoms to go away so quickly.

On the 21st, I introduced a multivitamin. I suspect my calcium is low because I have poor posture and back aches. For the last three years, I´ve been very active and have regularly lifted weights. I am 35 and my BMI is normal at this time. As a child, I fractured my wrist from a pretty low-impact fall. I played basketball and soccer competitively throughout my childhood.

I am definitely going through mixed emotions. Thankfully, I have found some local resources. Not a community yet but at least a few Doctors specialized in this.

knitty kitty Grand Master

@ChessFox,

To answer your question "Did anyone notice perhaps milder mental distress compared to before after months or years of living gluten-free?"

Many Celiacs report having more intense symptoms after a glutening than they had previously.  This happens when a doctor orders a patient who has  already gone gluten free to do a gluten challenge.  

It's because your immune system is still geared up to react to gluten.  After several years without any accidental glutening, your immune system can become slower to react.  

To help with the depression when glutened, I take 500 mg tryptophan and 200 mg of Theanine.  Tryptophan helps make those feel-good neurotransmitters and helps heal the intestines.  Theanine helps to calm.

Thought this might be of interest....

"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

 

Posterboy Mentor
11 hours ago, ChessFox said:

When I look at my journal, I did not change anything else in my routine. I took out gluten and dairy at the same time. So I do not know what role dairy plays as of now. I was not expecting the neuro symptoms to go away so quickly.

On the 21st, I introduced a multivitamin. I suspect my calcium is low because I have poor posture and back aches. For the last three years, I´ve been very active and have regularly lifted weights. I am 35 and my BMI is normal at this time. As a child, I fractured my wrist from a pretty low-impact fall. I played basketball and soccer competitively throughout my childhood.

I am definitely going through mixed emotions. Thankfully, I have found some local resources. Not a community yet but at least a few Doctors specialized in this.

ChessFox,

Depression can be triggered by Inflammation so it makes sense that removing gluten would help your Neuro symptoms.

Here is a couple good articles about it.

https://www.psychologytoday.com/us/blog/happiness-is-state-mind/202009/the-relationship-between-inflammation-and-depression#:~:text=Research has shown that inflammation plays a crucial,also been linked to the development of depression

https://nhsjs.com/2020/the-role-of-inflammation-in-treatment-resistant-depression/

If you continue to have Neuro problems consider taking Benfotiamine a Fat Soluble B-1 with a Magnesium Citrate or Magnesium Glycinate with meals.

I had severe depression when I was diagnosed....but the Lord being my help I found Magnesium early...

It really helped my depression symptom's.

Here is a couple good articles about how Magnesium again as Magnesium Citrate or Magnesium Glycinate with meals can help any lingering depression issues you might have.

Magnesium with Benfotiamine and B-Complex is synergistic and work to help down regulate inflammation in the body.

See this research entitled

"Rapid recovery from major depression using magnesium treatment"

https://pubmed.ncbi.nlm.nih.gov/16542786/

And this one I will quote from because it explains the process by which Magnesium helps depression well!

Entitled "Magnesium for treatment-resistant depression: A review and hypothesis"

https://www.sciencedirect.com/science/article/abs/pii/S0306987709007300

quoting

"A 2008 randomized clinical trial showed that magnesium was as effective as the tricyclic anti-depressant imipramine in treating depression in diabetics and without any of the side effects of imipramine"

And here is why...quoting again.

"Since inadequate brain magnesium appears to reduce serotonin levels, and since anti-depressants have been shown to have the action of raising brain magnesium, we further hypothesize that magnesium treatment will be found beneficial for nearly all depressives, not only TRD.

Low Serotonin levels can be a sign of low Magnesium levels....so by treating your Low Magnesium levels you can raise your Serotonin levels naturally by supplementing with Magnesium!

This (Magnesium) and Thiamine will help your Neuro problems...

For the horrible Anxiety Vitamin B-2 aka Riboflavin is helpful and why taking Benfotiamine, a B-Complex and a Magnesium Citrate or Magnesium Glycinate with meals is synergistic and can help your lingering Psychotic  symptoms IMO.

There is probably more than one B-Vitamin you are low in and also why Magnesium and a B-Complex is synergistic....B-3 aka Niacin is helpful as well as Niaciamide....but in order to keep this short....I only have time to explain the Magnesium connection to depression right now...

I can only tell you taking Magnesium Citrate helped my depression and quickly!

I hope this is helpful but it is not medical advice.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy,

AmericanaMama Contributor

I am so glad! How very scary for you otherwise. I am sorry you went through all of this.

My oldest tries to avoid gluten as he has found it helps him with his mood. I feel so bad because the poor guy had to be hospitalized so many times in his young adult years due to anxiety, mood swings, paranoia, and suicidal ideation. It makes me fully sick to think that all along it could've been gluten and no doc ever tested him. He went through really extreme treatments that I suspect have added to his problems with focus (although he still eats gluten, just not as much...I can encourage him from long distance to not eat any but he's an adult man in his early 30's). The medical and psychiatric community needs to put on their big boy/girl pants and think outside of the box on things. It's so upsetting to me to think. Sighs.

Robin

CMCM Rising Star
(edited)

Posterboy....you keep specifying Magnesium citrate and glycinate....have you read about those two particular forms of magnesium being best for this?  I've had a lot of digestive issues with magnesium in the past, not sure which ones I had tried but it was several different ones, but finally I tried one that is slow release and I haven't had issues with it.  I don't know if it's this particular form of magnesium or whether it's the slow release aspect of it.  It is Magnesium chloride (143mg)   combined with Calcium carbonate (238 mg).  If this is the wrong type or amount, I'd like to find something else that is more effective if I can find one I can tolerate.  

What specific amount do you take (mgs)? 

I may have asked this before....sorry if so.

Edited by CMCM
ChessFox Apprentice

Thanks Posterboy for sharing your experiences with Magnesium and providing all of these studies. I´ve had no digestive issues for more than a week so I will test Magnesium glycinate tonight and see how my mind and body reacts. I have half a bottle of Magnesium citrate and noticed that you said it quickly helped your depression. So I am open to trying this form as well.

I can really identify in many ways with your oldest son AmericanaMama. I experienced the suicidal ideation for the first time in my life during the withdrawal effects of a benzodiazepine medication. I should mention that I tapered down for six months to 0mg after nine months of use. They affect the central nervous system so there are literally hundreds of symptoms people can experience during the withdrawal phase and for many they really do experience all of them. Apparently, my grandmother used them in her 80s and 90s to fall asleep without any issue so it may depend on a lot of factors.

The paranoia is a tough one AmericanaMama. So his paranoia did not go completely away after gluten-free eating? Not even for a few days?

After years of investigating, I finally read in the National Institute of Health: “In South Pacific islands with a traditionally low consumption of wheat, schizophrenia rose dramatically (roughly from 1 out of 30,000 to 1 out of 100) when Western grain products were introduced.” (Dohan et al., 1984). This made a really huge impression on me. If I were a psychiatrist, I would probably make it mandatory that every new patient go gluten-free and dairy-free for two weeks and keep a small journal to write down their symptoms. It is not going to help everyone but could very well help a significant number of patients.

AmericanaMama Contributor

Hey there, Chess Fox...

Yeah, it's so important to taper down your meds if you choose to go off or with a doc. Being that my son was 21 at the time of his first "break", I wasn't in control of his meds. He got them all messed up and couldn't abide with any sort of side effect or need to build a blood level type of scenario. I think the first problem was the stupid Clozaril. Then it was Clonipin (sp), then Lithium, and a host of other types of antidepressants. Now, this was well before a black box warning was out there on suicide and all. His last p-doc said he was quite frankly over medicated. I believe that. Having said that, the problems he had to begin with was before being on any type of medication. Currently he's on nothing and seems to be doing pretty good. I think he'd do well to go to a support group of some type as I think he still has some stuff going on with anxiety. I wish he'd try to go full-on gluten-free but again, he's an adult. Best I can do is hope that most of my symptoms with neuropathy, anemia, joint pain, and osteoporosis right them selves as the best "testimony" to the gluten-free life. My best to you.

Posterboy Mentor
18 hours ago, CMCM said:

Posterboy....you keep specifying Magnesium citrate and glycinate....have you read about those two particular forms of magnesium being best for this?  I've had a lot of digestive issues with magnesium in the past, not sure which ones I had tried but it was several different ones, but finally I tried one that is slow release and I haven't had issues with it.  I don't know if it's this particular form of magnesium or whether it's the slow release aspect of it.  It is Magnesium chloride (143mg)   combined with Calcium carbonate (238 mg).  If this is the wrong type or amount, I'd like to find something else that is more effective if I can find one I can tolerate.  

What specific amount do you take (mgs)? 

I may have asked this before....sorry if so.

 

4 hours ago, ChessFox said:

Thanks Posterboy for sharing your experiences with Magnesium and providing all of these studies. I´ve had no digestive issues for more than a week so I will test Magnesium glycinate tonight and see how my mind and body reacts. I have half a bottle of Magnesium citrate and noticed that you said it quickly helped your depression. So I am open to trying this form as well.

Chess Fox and CMCM,

I will try and be brief tonight (or as short you can be).....the next few nights I am doing something else so this is my best night for maybe a 1/2 a week or so...

But I will follow  up back up....if this reply doesn't answer all your questions...

I am going to quote from this thread because I have/had explained most of your questions here...

If you still have questions before next week....read this online article on the different types of Magnesium (and there too many to count).....it is enough to make your head spin literally...

It is the best online article I've ever read that explains all the nuances of taking supplemental magnesium...

https://www.dietvsdisease.org/best-magnesium-supplement/

From the "Fatigue All the Time" thread see my early response...

quoting...

"Magnesium Glycinate is the easiest form to take but you shouldn't worry about taking Magnesium Citrate as a liquidgel or capsule or tablet with meals.

When you exceed approx. 200mg of Magnesium Citrate (especially on an empty stomach) Magnesium Citrate can cause a mild laxative effect known as the "Magnesium Flush" which is the urge for a bowel movement approx. 20 to 30 minutes after consuming Magnesium Citrate in a powdered form (Like Natural Calm Natural Vitality powder) or as a concentrate liquid sold for it's laxative ability.

HopeMoore you can take more than one kind of Magnesium if you prefer.

Magnesium Oxide will help with Constipation but it is not well absorbed and will not help Fatigue!

See this great article on the many types of Magnesium and which kinds are best!

https://www.dietvsdisease.org/best-magnesium-supplement/

I will quote a few things from it....so it will be easier to digest....

quoting

"Once ingested magnesium oxide is poorly absorbed by the body (approximately three-fold less than magnesium citrate). Only around 4% of its elemental magnesium is absorbed, equivalent to roughly 9.5 mg out of a 400 mg tablet (with 60% elemental magnesium).

Its low intestinal bioavailability means it often causes diarrhea, and is actually often used for laxatative purposes (8).

Use of this in a magnesium supplement may mean the manufacturer is cutting costs."

And their explanation of Magnesium Citrate

Quoting again....

"Magnesium citrate appears to be quite well-absorbed by the body; that is, it has a bioavailability of 25-30%.

As it mixes well with liquids, and is low cost, magnesium citrate is the most common type of magnesium supplementation." And one of the best type for the money you can buy IMHO.

Magnesium Glycinate can be on the expensive side....but it does not cause diarrhea and can really help fatigue and muscle cramps!

For the Vitamin B1 find a FAT Soluble form like Benfotiamine or Allithiamine or Lipothiamine etc...

For both Magnesium and Thiamine form matters!

See this article about the Fat Soluble forms like Benfotiamine have a much higher Bioavailabiity than those in Multivitamin or B-Complex.

Entitled "Pharmacokinetic study of benfotiamine and the bioavailability assessment compared to thiamine hydrochloride" as seen on the label as ThiamineHCL.

quoting from the abstract....

"Compared to thiamine hydrochloride, the bioavailability of thiamine in plasma and TDP in erythrocyte after oral administration of benfotiamine were 1147.3 ± 490.3% and 195.8 ± 33.8%, respectively. The absorption rate and extent of benfotiamine systemic availability of thiamine were significantly increased indicating higher bioavailability of thiamine from oral dose of benfotiamine compared to oral dose of thiamine hydrochloride."

But this is only true if you take it with meals the fat aids absorption. And preferentially with a Magnesium Glycinate or Magnesium Citrate!

Magnesium literally changed my life!"

It is me again.... a common sign that the Magnesium is working other than more energy and help with fatigue is complete remission of "Charlie Horses" IE Muscle Cramps....

And people complaining/noticing intense dreams.....

People usually say "they dream all the time" but don't remember them before starting Magnesium Citrate ( again with meals).....or the Magnesium Glycinate (again easiest to take) but 50% more expensive than Citrates and it can be taken easily at night because you don't need to eat anything with it etc....

But it is really the Magnesium at work....I went 5 or 10 years without ever dreaming....

NOW I always remember my dreams.....and I frequently remember them 3 or 4 days a week!

The Magnesium was the difference for me....also I was sleeping 10 to 12 hours a night and still wore out! before starting the Magnesium Citrate.....and would sleep through alarms....

Now I awake naturally before my alarm goes off!

I feel like I stole 1 to 2 hours of my day/life back....who wouldn't want another 1 or 2 back each day because you were so fatigued you could never get enough sleep!

I stopped talking, in part about Magnesium so much......because Ennis Tx would often mention how much it helped him......so I kind of let him "take that lane'......and focused on the B-Vitamin(s) like Niacinamide etc...

Now I have come full circle you might say.....and talk about the B-Vitamins and Magnesium together....and I know how they are connected now, the Lord being my help!

A good resource on Magnesium is George Eby and Dr. Carolyn Dean who the book

"The Magnesium Miracle" but you don't have to read the book....

IF you are taking the right Form(s)......and why I usually tell you which kinds best absorbed....

Instead of trying to explain each and every time....

a quick google search pulled up Dr. Carolyn Deans FAQ PDF on Magnesium....

http://life-transformation-institute.org/resources/handouts_phil/Magnesium_UltimateGuideDrCarolynDean.pdf

I have not read it....I am only offering it here as resource to you...

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

 

 

CMCM Rising Star
(edited)

Thanks Posterboy!  I just ordered a bottle of M. Glycinate....a good one, I think.  I look forward to seeing how well it works for me.  I am "mostly" rid of leg cramps just from taking the Slow Mag I take, but I also researched a bit after I wrote my comment to you and I see that the Mag Chloride I'm taking isn't the best one or the best absorbed, even though it is well tolerated.  I also saw some mixed ones (citrate and glycinate) but I decided to try to one that is just glycinate and see how that goes. 

I'm always appreciative to hear about things that work for others!!!

Edited by CMCM
Posterboy Mentor

CMCM,

I had to look it up....so it took a little time to find it.

I will be brief here is another thread about your issues.....

It has a lot of helpful tips by Ennis_Tx and the Posterboy about how Magnesium and other Vitamin/Minerals can help depression and anxiety...

I will try and circle back in a week or two to summarize some other things I did that helped my Depression....the Lord being my help.

But for know try and read the above thread and it will give you some nice helpful suggestions/tips until then.

And also this research article will help you too.....I will be talking about their paragraph on B-Complex's when I get a chance to follow back up on this thread...

So try and read it when you get a chance...

see this research entitled "Understanding nutrition, depression and mental illnesses"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

I hope this is helpful but it is not medical advice.

Posterboy,

CMCM Rising Star

Thanks....I'll read this article in detail, looks like a lot of good information.  I don't have depression issues myself (someone else around here brought it up), but I'm trying to figure out which vitamin and mineral deficiencies I might have.  My son (celiac) DOES have longstanding issues with anxiety and depression, though, so I'm always looking for things that might help him.

ChessFox Apprentice

My best to you and your son as well AmericanaMama.

The first "break" can be extremely hard for everyone. It is great to hear how highly functional he is considering everything. I am hoping to be a testimony for others too. With all the physical and psychological changes, I do feel like a new person yet with all of this strength and sense of perseverance to have arrived this far.

I have experience with Klonopin. The way I got through withdrawal was telling myself over and over again that things would get better in either one hour, one day, three days, or a week. What is interesting is that in my community of benzodiazepine withdrawal there were members that recommended going gluten-free to minimize stress on the system.

In a few days, I will arrive at three weeks gluten-free. I cannot wait to soon be counting months and then years.

AmericanaMama Contributor

Chess Fox, just like I tell my own child, you are stronger than you know. The fact that you could tell yourself to take it hour by hour during withdrawal is a testimony to your tenacity and, frankly, a greater hope coming from inside. It's quite the story. Seriously. Cheers!!

Ya know, I've struggled with bipolar depression on/off for years. When I decided that, for me, it no longer made sense to stay on my antidepressant, Effexor XR (for 15 years, yikes), I read up and slowly tapered. I was working full time then (OMG...in customer service at that...in a bake shop known for their wedding/celebration cakes...the "jolly" irony) and even at the slow rate of tapering I was doing I had horrifying withdrawals. Wanting to cry for nothing, dizzy brain "zaps", and of all things, leg cramps and flu-like symptoms. First thing I noticed, after taking something like four months to do this, was that I could actually, sincerely cry. Effexor stole my tears I use to say. I'm glad I'm done with that. (That isn't to say all meds are bad or whatever)

In terms of diet, "way back" in the early 90's, I remember hearing about processed foods, sugar, and "white flour" affecting the body. The medical community seemed to lump it with all quack "pseudo-science". I wish I would've paid more attention because I would've done things differently in the lives of my sons (one has Asperger's) and myself. What do you do? You look forward to more research and technology progressing, making the lives of folks better. I mentioned a book I'm going to be getting at the library soon over on the life after diagnosis (or similar) forum topic called This is Your Brain on Food by Dr. Uma Naidoo. She is a psychiatrist that works for Boston Mass Gen in the area of "Nutritional Psychiatry". Who knew there was this specialty? I look forward to reading it and seeing what all she has to say. She's a huge proponent of a healthy gut biome and eating whole foods (no gluten). She's helped quite a few people eliminate a lot of anxiety via a better diet.

Cheers,

Robin aka AmericanMama

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    • Kathleen JJ
      Hi all,  Two weeks ago we learned our 7 your old has Celiacs and we are of course finding our way in his diet. However, we booked a skitrip a few months ago that will take place in February. We're going to the same hotel we went last year. The trip is non refundable so now I'm already starting to think how we will do this.   I've contacted the organization who was really really understanding and supportive. They've worked with this hotel for many years and the hotel (and restaurant of course) is prepared to do what they can. Storing and heating/preparing food that we bring is not a problem for them (which is already a huge relief) nor is providing fruits and vegetables (cucumber fi) to put in a lunch box as he will not be able to eat in the restaurants on the slopes. I checked, the ski area has 3 restaurants that offer gluten free options, but he is only 7 and with 7 year old's there's always the additional hurdle of 'yuk, I don't like the sight/taste/smell of it or I don't know it so I won't eat it' factor the consider 🙄. So we'll pack a lunch for him to take. [side question: if there should be an accidental intake and he gets a reaction, how strongly do we have to expect this: will he poo his pants? Will he be able to hold till he gets to the toilet at the end of the slope? Will he be able to still stand or will the pain make him having to lie down? We had the diagnosis rather by accident so have no experience with 'normal' symptoms or how violent they are and we would like to inform the ski instructors]   He loves oatmeal and we will bring gluten-free oatmeal for breakfast so that will be covered too, but for diners I'm already worried.    So my question is: Do you have tips for childproof gluten-free meals that could be easily heated or prepared in the hotel without risk of contamination?   Thank you for your reactions... Kathleen
    • Wheatwacked
      Eesearch indicates that a significant portion of people with dermatitis herpetiformis (dermatitis herpetiformis) can experience worsened symptoms when exposed to high levels of iodine; however, not everyone with dermatitis herpetiformis will react to iodine, and the exact percentage depends on individual sensitivity and dietary factors.  I don't have dermatitis herpetiformis, but iodine is essential.  I would start with 1 drop of Liquid Iodine (KI + I2).  One drop is 50 mcg and evaluate.  The RDA for iodine is 150 mcg a day.  It's $8 for a 2 ounce bottle, about 1000 drops per bottle from pipingrock.com. To me it seems logical that with no gluten coming in, eventually your skin would run out of gluten for the iodine to attack.  One of iodines functions is to break down defective cells to make room for new cells.
    • Wheatwacked
      Given your symptoms and family history and your low gluten consumption before the blood test, eventually you will be diagnosed, but it may take years.  Ask your doctor about nutrition deficiencies due to malabsorption.  Vitamin D deficiency is almost ubiquitous. Unless your doctor has an answer to your health issues, once you've pursued a diagnosis to your satisfaction I would suggest a trial period of gluten free.  In the meatime,  Mayo Clinic research indicates a first degree relative of a diagnosed Celiac is 42% likely to also be Celiac. Dermatitis herpetiformis causes itchy bumps and burning blisters as a result of a gluten sensitivity that makes your immune system overreact.  Are You Confused About Your Celiac Disease Lab Results?
    • disneyfamilyfive
      Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 
    • Scott Adams
      It sounds like you're navigating a lot right now, and it’s good that you’re being proactive about your health given your family history and symptoms. Based on the results you shared, the elevated IgA Gliadin and IgG Gliadin antibody levels could indicate an immune response to gluten, which may suggest celiac disease or gluten sensitivity. However, your tissue transglutaminase IgG (tTG-IgG) result is within the normal range, and your total IgA level is sufficient, meaning the test was likely accurate. While these results might point towards celiac disease, the diagnosis often requires further interpretation by your doctor, especially in light of your symptoms and family history. Your doctor may recommend an endoscopy with a biopsy to confirm the diagnosis, as blood tests alone are not always definitive. In the meantime, you might want to avoid making dietary changes until you discuss the results with your healthcare provider, as going gluten-free before further testing can interfere with an accurate diagnosis. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. This section covers your two positive results: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)    
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