Clueless where to start

[Marianne82]

Hi all,

In autumn I started to lower gluten, dairy, soy, egg and processed food intake. I decided to minimize first. I used to eat a lot of all that, and then very little. Then I quit g/d/s/e. I also upped my intake of fruits, veggies, meat, fish. 

It has been such a turnaround, that I'm not sure I should laugh about the new hope. Or cry about all these needless lost years. I am 40. My son is 12. His dad is not involved. In retrospect, I had mild symptoms from childhood. Skin problems, digestive problems, anxiety (there was also abuse, so that distorts the picture). I instinctively refused certain foods, especially dairy, as a kid and teen. But was forced and humiliated into having them. Which is weird, since my brother has severe dairy intolerance. My son had acid reflux and as soon as he could signal it, he refused all dairy. He has rashes when he accidently has it. Doc didnt want to test him, but he didnt eat it anyway.  

In my adult life another severe trauma happened, as well as repeated infections and antibiotic courses, and bad responses to psychiatric meds. And I had my child. After all this, I started to develop more and more symptoms. Physical ones, like fatigue, IBS, hormonal problems. Psychiatric ones, like emotional volatility, anxiety, depression, psychosis, problems with executive function, concentration, brain fog. I was diagnosed schizophrenia, ADHD, borderline....something different every time. 

For ten years I lived in hell. And my loved ones with me. I was not capable of functioning a large part of the time. Caring for my child. Working. Keeping friendships. My family was already difficult, but blew up. I used forced meds that destroyed body and mind and did not work well. All this time I suggested a food intolerance, but I didn't exactly know what. Just cutting out dairy wasn't enough. I proposed a glutenfree/dairyfree diet when in a ward long-term. Doctors and nurses ridiculed me, and forbade it. They refused to do a blood test. Saying I was delusional linking diet with psychiatric symptoms. I now know this is nonsense...I read coeliac, non-coelic gluten intolerance, dairy are linked to psychosis. 

I got remarkebly better on a few food diet (ADHD-diet that eliminates nearly everything). But still not really. And I wasnt sure about all the rice in the diet. So I quit. And now decided to just go by instinct. I quit dairy, eggs, soy. I minimalized gluten and rice. I can't really explain what happened. Almost in an instant, my mind fell quiet. I have been off meds from april 2022 when I literally nearly died of antipsychotics. It was emotional turmoil since then. Until this diet. Delusions, anxiety, depression, rage, flashbacks, suicidality...nearly vanished. My psychiatrist and social worker are shocked. The change is so radical, that I cannot deny it. My psychiatrist acknowledges the total change, and still says diet cannot do this. He is probing me to find out another reason. 🙄 

I can be there for my child again. After all these years, I can really be there for my child again. And all it needed, was to "skip my morning bread and cappuccino's". And had psychiatry believed me, or I been more aggressive about it, I had known for a decade. Things are starting to fall into place, and as said: not sure whether to laugh or cry. 

So. That is my story. 

I just don't know, what next. 

I am terrified of it all being coincidental, and me relapsing. I eliminated several things, so I still do not know what I respond to. My IBS problems strangely got worse. Maybe for all the new veggies and the bit of cheating. My executive and cognitive functions, and fatigue, are still very bad. A decade of trouble and meds obviously took its toll. There are mild psychiatric symptoms still, after cheating mostly. My psychiatrist was shocked enough by the change to finally agree on a blood test. I basicly ordered him to check my thyroid, intolerances and some other stuff. I'm not very sure whether that works though, because I'm not having much of the most suspicious stuff for 1.5 month now. I'm also considering having my son officially tested, though he doesnt want to.  

Any ideas are welcome. My doctor obviously doesnt have a clue. Neither do I. I will visit a naturopath in february...but by now I want to make sure that I myself understand. 

Thank you. 

[Marianne82]

Sorry for the long story. A lot happened. I'm not even sure if gluten is the culprit. Someone also mentioned FODMAPS. But to be honest, I don't know where to start. 

[trents]

Welcome to the forum, Marianne82!

Unfortunately, to get tested for celiac disease you would need to go back on regular amounts of gluten for a period of time leading up to the testing in order for the test results to be valid. The Mayo Clinic guidelines for the pretest gluten challenge are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the blood antibody testing and the same amount of gluten consumption for two weeks leading up to the endoscopy/biopsy of the small bowel lining. From your spelling of "coeliac" I assume you are in the UK and I know they start with the blood antibody test and then follow with the endoscopy/biopsy for confirmation if the antibody test is positive. There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. But NCGS is 10x more common than celiac disease.

It also sounds like you have developed other food sensitivities/intolerances which we know is extremely common for celiacs.

Sounds like you have not been all in on the gluten free diet and so that would make it difficult to sort out things. Whether it's celiac disease or NCGS makes no difference in the antidote, which is total abstinence from gluten for a lifetime, not lower gluten but total abstinence. Perhaps this would help:

 

[Marianne82]

Thank you so much for the quick reply. And the information link. 

Oh dear...back on all the scary food. I was hoping there was some way around that.😣 I would have to make a good plan, in case it leads to relapse. My response to dieting was so pronounced, that I am nervous to go back.  

If it is NCGS...what then? Is there any way to find out? The mental health diagnosis makes it hard to be believed without an official test result. Even though my psychiatrist is slowly changing his mind, he is still of the old-school believe nutritionists are quacks. 

I have now eliminated all "obvious" gluten. But not traces and contamination and all that. That seemed to go a bit far, not even knowing what is the culprit. 

I'm not in the UK, didn't know I was using UK spelling. I'm Dutch. Not a native speaker. In Dutch we say coeliakie. Hence my tendency to go for coeliac rather than celiac. Just mixing in a bit of my own language.  That said: the system is similar here. First blood test, then the other test. 

 

 

 

 

[trents]

NCGS and celiac disease share many of the same symptoms and abstinence from gluten is the remedy for both. There currently is no test for diagnosing NCGS. Celiac disease must first be ruled out. If celiac disease is ruled out and the symptoms persist, then the next step is committing to a gluten free diet. If the symptoms improve on a gluten free diet then the conclusion is NCGS. Many people find they cannot adhere faithfully to a gluten free diet without and official diagnosis. Psychologically speaking, they find ways to rationalize their symptoms as being caused by something else.

Many celiacs are also intolerant of oats and dairy. The proteins are similar to gluten and with dairy there is also a potential issue with lactose, the sugar in milk. I know giving up dairy would be a tall order for a Dutch person.

[Marianne82]

Yes, I will check for celiac. Then go glutenfree completely if it isn't celiac. To test it. My symptoms aren't exactly easy to ignore...it is worth a try. 

Biggest problem is that doctors dont want to help without diagnosis and tell me I am delusional. They even did so when I had thrombosis (later confirmed). If they don't believe me when my leg is twice as thick... NCGS will be even harder. Citing my psychiatrist: "because you came in with schizophrenia, I disregarded all your ideas, thinking they were crazy...I start to see now, that you have quite a few good ideas". 

I suspect I respond to a lot by now, from eating stuff I can't tolerate. So I didn't know what to eliminate. I wondered about the oats. I only use glutenfree oats, but I suspected they may be a problem from my response. Thanks for telling me.  

Haha, yes the dairy is big. My mum made it her life project to get me to drink milk and eat cheese. We were raised with the thought that without dairy, you will be a weakling, your bones will all break, and you miss out on all the fun stuff in life. Even my very obviously dairy intolerant brother was forced to use milk products sometimes. 

But on second account I'm rather out of hospital without cheese. 🙂

Thanks for helping me get started! 

[trents]

Many members on this forum have experienced the degrading attitudes of which you write on the part of medical practitioners who dismissed them as "head cases" and would not take them seriously. It can result in many years of suffering and diagnosis delay. Do you have options of switching doctors in your health care system?

With oats, it's not always the cross-contamination by wheat that is the issue but the oat protein itself (avenin). Also with dairy, it can be either the protein (casein) or the sugar (lactose).

[Marianne82]

Yes, I was wondering how many other people are suffering in wards, when a diet would get rid of their symptoms. I can switch doctors, but it won't get better. This is the first psychiatrist in 11 years who dares to admit he doesn't know, or he is wrong. I'm grateful that he does nothing now. That is improvement.

I have asked for a second opinion with an integrative psychiatrist. They are rare, and he can't treat me for being too far away. But I hope he can give my psychiatrist some ideas. 

[GF-Cate]

Hi Marianne,

Reading your post a few articles I saved came to mind.

This one from an integrative medicine doc:

Gut Bacteria And Schizophrenia

https://theceliacmd.com/2019/03/28/gut-bacteria-and-schizophrenia/

Schizophrenia and the Gut

https://www.psychologytoday.com/us/blog/balanced/201903/schizophrenia-and-the-gut

Correcting nutrient deficiencies is crucial for celiac (and I would say mental health) as well. So much excellent info in many posts on this forum. 

Also research drug induced nutrient depletion. You'll find info on this forum & online about this. Especially important to consider if you've taken a lot of pharmaceuticals. This article is an overview - lots more info here & other sites online.

https://nutritionreview.org/2016/12/practical-guide-avoiding-drug-induced-nutrient-depletion/

I would be sure you're eating enough healthy fats in your diet - needed for many things including brain health. 

If you are hesitant to reintroduce gluten for official celiac diagnosis, you can start with the genetic test which does not require consuming gluten for accuracy. It is not a diagnostic test, but essentially rules out celiac if you don't have the genes. In the US we can order it online without a doctor, but not sure if you have that option. 

This is The Salerno Experts' Criteria: Diagnosis of Non-Celiac Gluten Sensitivity (NCGS)

(a ruling out of other conditions)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488826/

Netherlands Celiac Association

https://www.glutenvrij.nl/

There is a Celiac Center in Amsterdam -- may be helpful to connect with a GI doctor there. This is one of the doctors affiliated with it:

https://www.vumc.nl/zorg/uw-artsen-en-zorgverleners/zorgverlener/prof.-dr.-g.-gerd-bouma.htm

http://www.emcg-ibd.eu/gerd-bouma.html

[Marianne82]

Thanks! My concentration left for today is zero, but I will read into it tomorrow or day after. It seems to be very valuable information. 

[frieze]

On 1/13/2023 at 1:43 PM, Marianne82 said:

Sorry for the long story. A lot happened. I'm not even sure if gluten is the culprit. Someone also mentioned FODMAPS. But to be honest, I don't know where to start. 

Research Abram Hoffer.  Good luck

[Marianne82]

Thanks! 

I thought, maybe it is more the dairy and eggs. I have been eating traces of gluten without severe response. And several people told me I was imagening things or "my son has coeliac and I find it offensive that everyone suddenly thinks they can't tolerate gluten, I'm sure you are fine, or your doctor would have noticed". My doc said it was probably other things that changed. 

I just had lunch in a restaurant. I asked the waitress if they had dairyfree and glutenfree milk. They said no. I ordered something different. I asked if there was dairy or eggs in another dish. She said there wasn't. I was unclear about the gluten. Thought she would tell me, because I just asked one minute ago. And thought: I'll see. I was stupid. I ate. A lot. 

First got disoriented. Then scared. Then slightly delusional. Then I took meds. I still feel terrible. My gut doesn't like me much now, but that is very mild. It's just that my mind feels absolutely horrible, and all my old fears come back and suddenly seem very reasonable, and I'm so very scared. It's been a while since I felt like this. Now, it is about 3 hours maybe after I ate there. I just called the restaurant and they said there was gluten in it, and they will put all the ingredients on e-mail for me. 

Is it normal to respond so quickly? Or is this co-incidence? If this is a gluten response, how long does it last? It scares me. 

 

[Marianne82]

And is it possible to respond more strongly now, than before? 

[trents]

I'm not sure why you asked for gluten-free milk as gluten is found only wheat, barley and rye. It's a grain protein that does not pass into milk from what the cows eat.

When you have a gluten disorder and been off gluten for a significant amount of time, you will have a stronger reaction to it than you originally did when eating it regularly. When you go off it you lose whatever tolerance you used to have.

Don't expect restaurant staff to know about gluten. I do find some that are knowledgeable but for the most part they are clueless. And even when you order gluten-free menu items it does not eliminate cross contamination back in the kitchen from shared cooking surfaces and shared utensils.

[Marianne82]

I was imprecise with my language. They often have all sorts of "milk" here in cappuccino...oat milk as said, coconut, almond, cashew... i'm not very much into this whole eating thing yet. 

I feared so. My response was more acute now. 

Well, I guess that's a good reason to start cleaning here, and be more careful. I was secretly hoping it was the dairy, but not gluten. Ah well. Cleaning up tomorrow then. 

 

[Wheatwacked]

On 1/13/2023 at 1:34 PM, Marianne82 said:

My psychiatrist acknowledges the total change, and still says diet cannot do this.

He is in denial. Low vitamin D is common in Celiac Disease and affects mental health and autoimmune diseases in addition to bones. Vitamin D and Depression: Where is all the Sunshine?

If you are struggling with stress, fear, depression, and self-defeating thoughts. It’s not your fault.  Dr Amen

Edited January 17, 2023 by Wheatwacked

[Marianne82]

Thanks. I indeed think it is denial. 

I have gotten a part of my results. My doc just sent me the file, with as an only comment: you have anemia. I checked everything. My ferritine and related values are indeed very low (just slightly above the "needs-blood-transfusion-cut-off"). 

This is weird, because I eat absurd amounts of meat and veggies the last months. As in: a big piece of meat two or three times a day, with vegetables. To me this signals my absorption is disturbed. Which fits the IBS...

...and the intolerance, that my psychiatrist did not even mention. I do not have celiac. I do have lactose intolerance (or allergy...it was in the category of allergies...I need to check with my GP). I have probably been wrecking my body for decades by eating stuff I can't tolerate. Dairy is in high doses in every meal here. Something that concerns me, is that it still shows up. Dairy is the one thing I have religiously avoided for the last period. I only had traces of it, on less than a handful of occasions. Not sure how this works. 

My doc still does not believe that the food intolerance, the IBS, the anemia and the mental health problems are connected. At this point, I conclude that he makes the willful CHOICE not to see it. And I can't do more to show it to him. 

I will see the naturopath in 2 weeks. I hope they can make a plan with me. Until that time I will strictly avoid gluten and dairy. 

I'm....to be honest, I'm crushed. I had psychoses that made me believe i was literally in hell, which is a horrible trauma. For ten years, they told me I had schizophrenia, borderline, ADHD. That I would never heal. Always need medication that destroys your mind. I wasnt capable of caring for my child! Lost family and friends. My job. I begged them to test me, to help me change my diet. They said I was crazy for it. And I shouldnt. They blocked it in the ward. I let them talk me out of it...and feel like an idiot for it. They solded me, because I was so bloody fatigued and disorganised, that I couldn't do my basic life. They kept telling me I wasn't trying hard enough. 

Changing my diet helped a lot. Though not everything. Which is logical, if you look at my ferritine levels and the extent of damage my GI tract and brain probably already have. Anemia is also related to ADHD, depression, anxiety, fatigue, hair loss, etcetera. 

And now it is black-on-white...and they still deny it.  

Sorry for being emotional about it. But had they listened to me (or I to myself)...the whole route of my life, and that of my kid, had been so different.  

[Marianne82]

My ferritin level is 6. My doc suggest I just eat more vegetables. 😕 

[Marianne82]

Correction: no celiac showed up. I have barely been eating gluten the last months. So I'm not sure. The dairy still showed up though. 

[Wheatwacked]

 

 

Giving up the gluten lifestyle is like losing a loved one. There may be a period of mourning and thats ok. After all, your entire life you were told it is an essential part of your life and in the end it is not a good friend at all.  Lots of vitamin D is your friend. I have taken 10,000 IU (250 mcg) a day since 2015. It gave me hope. I did not start GFD until I was 63 and yeah the tragetory of my life would have been so very different, better hopefully, without it. Whether Celiac or NCGS or just plain Gluten Sensitivity the recovery is the same. No wheat, barley or rye and work on replenishing vitamin and mineral deficiencies in your diet. I wish you well and believe in yourself again. You don't need an official diagnosis to be Gluten free. If it is making you crazy trying to prove to a doctor that it is bad for you and you are doing better without gluten, then don't. Doctors don't much care about what you eat.  I had one doctor tell me to find someone else and don't come back.

Here is a good read about how others have been treated.

[knitty kitty]

@Marianne82,

You're not alone!  I've been through a similar journey where doctors wrote me off as crazy.  My heart goes out to you.  I, too, lost all family including my son, friends, and career because doctors misdiagnosed me.  I was laughed at for suggesting Celiac Disease, too.  Nutritional deficiencies caused by malabsorption due to Celiac Disease and their nasty pharmaceutical medications (as @gluten-free-Cate mentioned) caused severe thiamine deficiency, Wernicke's Encephalopathy, which my doctors did not recognize outside of alcoholism.  

Get a genetic test for Celiac Disease!  Anemia will affect antibody production and can result in false negative tests.  You don't have to eat gluten for a genetic test.  

Most tests for Celiac Disease test for an antibody tTg 2 while on gluten containing diet.  Some lucky people produce tTg 6 antibodies which attack the brain!  There's a connection between tTg 6 production and schizophrenia!  It's also found in Alzheimer's and Parkinson's diseases.

Share these articles with your doctor!

Increased prevalence of transglutaminase 6 antibodies in sera from schizophrenia patients

https://pubmed.ncbi.nlm.nih.gov/22516148/

And...

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

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

And...

Wernicke's Encephalopathy in a Patient with Schizophrenia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1924727/

and...

Wernicke Encephalopathy in schizophrenia: a systematic review

https://pubmed.ncbi.nlm.nih.gov/32957818/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

High-dose thiamine strategy in Wernicke–Korsakoff syndrome and related thiamine deficiency conditions...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8214134/

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

And...

Wernicke encephalopathy in patients with depression: A systematic review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7590192/

I found High Dose Thiamine very effective in improving my brain health and regaining my brain function.  I took 500 mg a day of Thiamine Hydrochloride and had immediate improvement.  I've continued with Allithiamine and Benfotiamine, forms of Thiamine proven to help brain function and heal the digestive system.

I hope this helps! 

Edited January 20, 2023 by knitty kitty
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[Marianne82]

Thanks you all. I will respond better later! But thanks for the recognition, and the support. 

[Marianne82]

Also, I'm so sorry this happened to you as well. 

[Marianne82]

I'm so scared. 

Since I eliminated dairy and gluten, the most obvious symptoms that ruined my life, and that of my kid, my family...magically cleared up. Getting the test friday just...I grieve. I have begged people to help me with this. And they not only refused, but actively sabotaged it. Both my parents, who from childhood forced me to drink milk against my will, and the doctors, who basicly did the same in the wards. With all their gaslighting and their refusal to hear me. And I feel so stupid: I refused to hear me. I knew something was wrong, but in all the turmoil didn't take the right steps. 

It starts to sink in how severely disabled I still am. I suspect severe damage to gut and brain (and all the rest of me). I'm like a demented old lady in a way...my memory, my concentration, my attention, my personality...they are shot to pieces. My psychiatrist now tries to diagnose me with ADHD and autism. But in my childhood, I had no ADHD or autism. I'm like that now. Because of all the bad food and meds. I'm worried that there is so much neurological damage, that I will never be able to be me again. 😢

My period just started, and though things have gotten so much better than before, it still it is still not my best period. What would have been possible with an earlier diagnosis? 

And my gut problems only got worse after starting the gluten-free/dairy-free diet. I don't understand why. My gut hurts 24/7 now, and I respond to everything. I am so tired this weekend, that I couldn't even do the tiniest tasks. This is strange...wasn't it supposed to clear up? 

@trents mentioned pernicious anemia. I suspect that is a possibility. I have nearly the complete list of symptoms. And I had suspiciously high B12-levels before, which tends to show a deficiency in how the body absorbs it. I'm afraid I and they ignored the gluten/dairy intolerance for so long, that my body got so wrecked, that I now have PA. 

I'm panicking over the whole situation. I'm so frightened it won't get any better than this. 

 

[trents]

28 minutes ago, Marianne82 said:

I'm so scared. 

Since I eliminated dairy and gluten, the most obvious symptoms that ruined my life, and that of my kid, my family...magically cleared up. Getting the test friday just...I grieve. I have begged people to help me with this. And they not only refused, but actively sabotaged it. Both my parents, who from childhood forced me to drink milk against my will, and the doctors, who basicly did the same in the wards. With all their gaslighting and their refusal to hear me. And I feel so stupid: I refused to hear me. I knew something was wrong, but in all the turmoil didn't take the right steps. 

It starts to sink in how severely disabled I still am. I suspect severe damage to gut and brain (and all the rest of me). I'm like a demented old lady in a way...my memory, my concentration, my attention, my personality...they are shot to pieces. My psychiatrist now tries to diagnose me with ADHD and autism. But in my childhood, I had no ADHD or autism. I'm like that now. Because of all the bad food and meds. I'm worried that there is so much neurological damage, that I will never be able to be me again. 😢

My period just started, and though things have gotten so much better than before, it still it is still not my best period. What would have been possible with an earlier diagnosis? 

And my gut problems only got worse after starting the gluten-free/dairy-free diet. I don't understand why. My gut hurts 24/7 now, and I respond to everything. I am so tired this weekend, that I couldn't even do the tiniest tasks. This is strange...wasn't it supposed to clear up? 

@trents mentioned pernicious anemia. I suspect that is a possibility. I have nearly the complete list of symptoms. And I had suspiciously high B12-levels before, which tends to show a deficiency in how the body absorbs it. I'm afraid I and they ignored the gluten/dairy intolerance for so long, that my body got so wrecked, that I now have PA. 

I'm panicking over the whole situation. I'm so frightened it won't get any better than this. 

 

If you still have a lot of gut pain, what were the "worst symptoms" that are now "magically gone"?

Have you had an upper GI lately to check for things like peptic ulcers and H. Pylori? What about SIBO?

I have prayed for you to have peace of heart.