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Hi, 

I'm a 23 years old male and I've been suffering from severe reactions to gluten for about 5 years. My symptoms immediately after eating gluten (proportional to the amount ingested) are: 

  • Heart palpitations.
  • Strong anxiety. 
  • High blood pressure.
  • Belly bloating and strong indigestion. 
  • Strong water retention (depending on the amount ingested, anywhere from 4-6kg), seen on the scale in a day approx.
  • Lots of energy, probably due to the high blood pressure or anxiety.
  • Insomnia.
  • Inability to rest.

Whenever I eat gluten, I feel very energized and euphoric (and somehow very motivated to work and do stuff, and focused), but these comes with anxiety, heart palpitations, restlesness, bloating, etc.

The problem is, I have done a gluten free diet for 3-4 months and my digestive issues, anxiety, etc were immediately and totally relieved, however, I got back to eating gluten because I was feeling very depressed, unable to enjoy any activity, very low mood, very strong brain fog, extreme fatigue, low sex drive, I had really low blood pressure and I was VERY hungry. I was never satisfied by any amount of food and I was gaining lots of weight, plus I felt very depressed all along. Whenever I eat some gluten (e.g. 1-2 slices of bread), I get instantly energized but the anxiety is strong and I retain many kilograms of water (alongside the big swelling of my lower abdomen), which makes me look quite fatter without actually eating more.

What do you suggest I can do? It seems like a gluten free diet is not viable, and, after sticking to it for almost 4 months, I had to give it up as I was severely depressed, always hungry and tired, and could not keep going on with my daily life anymore. I feel like there's nothing I can do to feel completely good, since either eating gluten or going gluten free has its own set of side-effects. (Eating gluten keeps me mentally sane and going gluten free does not)

Last, it seems that gluten-containing products, mostly bread and cookies, are the only thing that can reduce my hunger and make me feel full and energized.

Note: I have done blood tests for celiac disease and got negative, but it was after I was 2 months into the gluten free diet so the doctor told me it might be a false negative.

Any thoughts and help you can offer is greatly appreciated, I am very desperate about this. Thank you.

 

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See a doctor.  I cannot stress that enough.  Before I dealt with my Celiac diagnosis I had severe clinical depression.  If you've not talked to a physician about the possibilities of treating the depression then you need to if only to know your options.  There's SO much information out there and so many interconnected bodily systems that your doctor may find a thyroid issue (which can be a strong factor in depression) or other problem that is affected by the change in diet or exists in your 'normal' state (without gluten) that needs addressing.

There's a world of possibilities.  Partner up with your doctor and start investigating, please.  Get the facts on what's up with your body.  You may be able to continue gluten free with some help or find a different solution.  Best of luck!

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I recommend going gluten free and staying that way permanently.  There is such a thing as non-celiac gluten sensitivity.  Have you been tested for an allergic reaction to  wheat? A lot of people are allergic to wheat.  Here is a link on NCGS.

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

Some people on this forum talk about having gluten withdrawal symptoms, including some who have had what is called gluten ataxia. For some people wheat can cause brain damage. 

Wheat is in just about anything so I recommend trying the following diet. It can take a very long time for the brain to heal. Very small amounts of cross contamination can be a big problem for some people. 

https://glutenintoleranceschool.com/gluten-contamination-elimination-diet/

I take a complete multivitamin, extra magnesium, and omega-3 fatty acids. I also take L-glutamine powder. 

I also get very strong anxiety if I eat wheat. I am also sensitive to some other grains.

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First off I would suggest going back on gluten for 8-12 weeks and getting tested for celiac, yes your symptoms sound like celiac, and most of us have a drug like withdrawal when getting off. There has been research that for some gluten is like a drug and the way it induces chemical signals in the brain.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

Second what do you eat when gluten free...that might be the problem if you eat gluten free processed foods, load up on starches, sugars, rice.....then the depression low drive and everything else can be from this...if you load up on soy as a man well your just throwing your hormones out of wack.  I use a keto/atkins diet, started off paleo basis and it gives me plenty of energy. I eat tones of healthy fats, leafy dark greens, and take B-vitamin supplements. This brings up another thought. GLUTEN grains and foods are enriched...practically sprayed with multivitamins....otherwise people would just die eating plain wheat based foods and cheap processed crap. Gluten free foods are normally not enriched in such a way so you to eat a bit of everything for a balanced diet. Again supplementing is great for it...I use Liquid Health Energy & Stress and Neurological Support 1 tbsp each 3 times a day and take magnesium dosed to tolerance...go look up magnesium, vitamin D, Iron, and B-vitamin deficiencies and see if those align with your issues they are the common ones.

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when i went COMPLETELY gluten free, i experienced gluten withdrawal.  it took several months to feel better and what you're saying about eating like crazy:  if your body is deprived of nutrients and it finally feels better when digesting, you're gonna be hungry. 

gluten will affect your mental state as well.  when i accidentally get 'glutened' i will turn into a miserable person.  very moody and angry. 

if you do indeed have celiac, keep in mind that it is an autoimmune disease - if you have one, you may have another.  it is also a systemic disease, meaning that it affects your whole body.   i had many (seemingly unrelated) symptoms and issues clear up once i went completely gluten-free.  i never had a positive blood antibody test but one of the  criteria that doctor's consider is reaction to the gluten-free diet.

finally, if you have been cheating while trying to figure out if this diet is beneficial to you, you've not been completely rid of residual inflammation.  so, basically, when you eat (even just a little) gluten, you are starting the cycle all over again.  stick with the program.

i agree with the other poster:  if you are depressed, get to a doctor.  your mental health is nothing to fool with.

good luck and i hope you find your answers and p.s. if you are vitamin deficient because you have undiagnosed celiac, it will affect your mental health as well.  again, good luck :)

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On 8/9/2018 at 8:57 PM, Ging said:

See a doctor.  I cannot stress that enough.  Before I dealt with my Celiac diagnosis I had severe clinical depression.  If you've not talked to a physician about the possibilities of treating the depression then you need to if only to know your options.  There's SO much information out there and so many interconnected bodily systems that your doctor may find a thyroid issue (which can be a strong factor in depression) or other problem that is affected by the change in diet or exists in your 'normal' state (without gluten) that needs addressing.

There's a world of possibilities.  Partner up with your doctor and start investigating, please.  Get the facts on what's up with your body.  You may be able to continue gluten free with some help or find a different solution.  Best of luck!

Hello Ging, 

Thank you for your answer. I have already seen a GI doctor which did not believe that I had any issue with gluten at all (he believes you are either celiac or you are not) and I will see another one this month. My family doctor just does not know what it can be, since all the blood work seems fine (thyroid and all the other variables). I do not think I can keep gluten free since it messes up with my energy levels and mental health though, I will see if the new GI doctor can offer some insight.

Thanks for your support!

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On 8/9/2018 at 9:16 PM, ch88 said:

I recommend going gluten free and staying that way permanently.  There is such a thing as non-celiac gluten sensitivity.  Have you been tested for an allergic reaction to  wheat? A lot of people are allergic to wheat.  Here is a link on NCGS.

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

Some people on this forum talk about having gluten withdrawal symptoms, including some who have had what is called gluten ataxia. For some people wheat can cause brain damage. 

Wheat is in just about anything so I recommend trying the following diet. It can take a very long time for the brain to heal. Very small amounts of cross contamination can be a big problem for some people. 

https://glutenintoleranceschool.com/gluten-contamination-elimination-diet/

I take a complete multivitamin, extra magnesium, and omega-3 fatty acids. I also take L-glutamine powder. 

I also get very strong anxiety if I eat wheat. I am also sensitive to some other grains.

Hi ch88, 

Thanks for your answer. I am aware of NCGS, I've been reading about it for a while, and my doctor too is aware of it but thinks my reaction to gluten might be something else (she says I might be reacting to some protein found in wheat). 

About the diet, I will wait a while until going gluten free again, since the last time I got into a terrible depression, relieved as soon as I began eating wheat again, but I'll save it and give it a try in some time. I'm not sure about the supplements since my blood tests say I do not have any deficiency.

Thanks for your input!

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On 8/9/2018 at 9:32 PM, Ennis_TX said:

First off I would suggest going back on gluten for 8-12 weeks and getting tested for celiac, yes your symptoms sound like celiac, and most of us have a drug like withdrawal when getting off. There has been research that for some gluten is like a drug and the way it induces chemical signals in the brain.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

Second what do you eat when gluten free...that might be the problem if you eat gluten free processed foods, load up on starches, sugars, rice.....then the depression low drive and everything else can be from this...if you load up on soy as a man well your just throwing your hormones out of wack.  I use a keto/atkins diet, started off paleo basis and it gives me plenty of energy. I eat tones of healthy fats, leafy dark greens, and take B-vitamin supplements. This brings up another thought. GLUTEN grains and foods are enriched...practically sprayed with multivitamins....otherwise people would just die eating plain wheat based foods and cheap processed crap. Gluten free foods are normally not enriched in such a way so you to eat a bit of everything for a balanced diet. Again supplementing is great for it...I use Liquid Health Energy & Stress and Neurological Support 1 tbsp each 3 times a day and take magnesium dosed to tolerance...go look up magnesium, vitamin D, Iron, and B-vitamin deficiencies and see if those align with your issues they are the common ones.

Hi Ennis_TX,

Thanks for your answer. That's the way I feel, whenever I take gluten I feel suddenly energized (anxiety-induced) and it lifts my mood somehow, but whenever I do not take it for more than a day, I start to have food cravings and very low energy (low blood pressure, moodiness, etc).

I try to have a Mediterranean style diet, but I did load up on rice, fruit and gluten free grains, as I was just too hungry and had recurrent hypoglycemias all day long when gluten free. I tried to go keto and paleo many times, but after 2-3 days I find myself very tired and unable to do anything.

I will request the vitamin blood work in the next tests; magnesium and iron are fine right now.

Thanks for your input!

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On 8/9/2018 at 9:35 PM, notme! said:

when i went COMPLETELY gluten free, i experienced gluten withdrawal.  it took several months to feel better and what you're saying about eating like crazy:  if your body is deprived of nutrients and it finally feels better when digesting, you're gonna be hungry. 

gluten will affect your mental state as well.  when i accidentally get 'glutened' i will turn into a miserable person.  very moody and angry. 

if you do indeed have celiac, keep in mind that it is an autoimmune disease - if you have one, you may have another.  it is also a systemic disease, meaning that it affects your whole body.   i had many (seemingly unrelated) symptoms and issues clear up once i went completely gluten-free.  i never had a positive blood antibody test but one of the  criteria that doctor's consider is reaction to the gluten-free diet.

finally, if you have been cheating while trying to figure out if this diet is beneficial to you, you've not been completely rid of residual inflammation.  so, basically, when you eat (even just a little) gluten, you are starting the cycle all over again.  stick with the program.

i agree with the other poster:  if you are depressed, get to a doctor.  your mental health is nothing to fool with.

good luck and i hope you find your answers and p.s. if you are vitamin deficient because you have undiagnosed celiac, it will affect your mental health as well.  again, good luck :)

Hi notme!, 

How long did it take you to feel normal and what were your symptoms? For me, it was interfering with my energy levels, motivation, hunger, mood, etc so that I could not work at all when gluten free. The longer I stayed on the diet, the worse it seemed to get (I was 4 months on it).

Okay, I will try to restart the diet in a few weeks when I am stable again, although I am already feeling mentally better after 1 week of eating gluten again (energy levels are back, hunger is controlled, mood is way better, etc, although the anxiety is back, which makes me do random stuff compulsively like a person with ADHD or somebody on adderall).

I will check my vitamin levels in my next blood work. Thank you!!

 

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1 hour ago, Pedro López said:

I tried to go keto and paleo many times, but after 2-3 days I find myself very tired and unable to do anything.

Start off Paleo, and eat sweet poatoes and fruit in moderation, in place of your grain for carbs, proportionally at that so you body changes out the carbs for a bit.

 

Fort the keto, it is called "Keto Flu" it takes days to get over, your body is changing gears...without a clutch. IT has to get used to not using carbs but fat instead for energy. SO you will bog down and feel like crap for a few days, there is a trick to make the transition faster, Extrenious Ketones like the ones from Julian Bakery, also make sure your drinking water as it will flush you out.
 

OH and if your a type 1....you need to talk to a doctor, I hear keto is unable to done with it, but a more atkins type I hear might be better for you.

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On 8/11/2018 at 11:24 AM, Ennis_TX said:

Start off Paleo, and eat sweet poatoes and fruit in moderation, in place of your grain for carbs, proportionally at that so you body changes out the carbs for a bit.

 

Fort the keto, it is called "Keto Flu" it takes days to get over, your body is changing gears...without a clutch. IT has to get used to not using carbs but fat instead for energy. SO you will bog down and feel like crap for a few days, there is a trick to make the transition faster, Extrenious Ketones like the ones from Julian Bakery, also make sure your drinking water as it will flush you out.
 

OH and if your a type 1....you need to talk to a doctor, I hear keto is unable to done with it, but a more atkins type I hear might be better for you.

Hello Ennis_TX,

I did try many times doing Keto but I am unable to completely transition to burning fat and end up having some carbs (although my digestions are great and I lose usually 10kg (20-22 lbs) in 3-4 days. I found that eating 100-120g of carbs a day is enough for me to lose 8kg of excess water weight and feel relaxed, but my sex drive drops to zero and my energy levels too. I am pretty sure this has to do more with gluten withdrawal than to low carbs, since bread is what I constantly crave. 

I will try to go Paleo for a few days and see how I feel then. Thanks!

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On 8/11/2018 at 6:51 PM, Kevonb124 said:

what are you eating primarily when youre not eating gluten?

Hello Kevonb124,

I eat many walnuts, 2-3 fruits a day, avocados, eggs, rice and meat or fish at lunch and dinner. When I was gluten free I would eat many gluten-free corn cakes and corn flakes with whole milk for breakfast; the rest was the same. I feel much more light-headed in the morning when I do not eat any gluten, than in the rest of the day.

Thanks!

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Pedro, your hunger and other symptoms seem to point to a leaky gut or "gut dysbiosis" which is what happens to those of us who don't have celiac disease but have developed "autoimmunity"  to many foods.  One of those foods is wheat (gluten) as well as nuts, eggs, dairy, soy,  corn & rice and potatoes.  So you may have developed a strong immune response to some of your "non-gluten" foods which are making you sick (research  "autoimmunity" ).  There is a method recommend of doing a total "elimination diet" of all suspected trigger foods for a few weeks and then adding them back in one by one and keeping good record of reactions.  It's a bit of trial and error and time to go that route.  But, if you are able to afford it, you can be tested to find out which foods are your triggers.  I ordered a stool test from Enterolab (enterolab.com) to see what antibodies were in my gut/stool to common foods - my triggers.   I then eliminated all of these foods to allow my gut to heal.  I also went to a program called Years Restored (google it) and did "cleansing" .  This program helped teach me what to do at home and I learned so much about healing with whole foods.  I get natural probiotics by eating raw foods like cabbage, onions, dark green leafy vegetables and followed the principles I learned about.  I have improved energy, mental clarity, no more joint & muscle pain and fewer GI and other symptoms.  I'm eating whole foods (avoid any processed foods) and have gradually been able to add back (properly prepared) rice and other gluten-free grains, some nuts and most seeds to my well-rounded diet.   I will stay away from corn, soy, peanuts, yeast, wheat, dairy & eggs for good since they cause me various symptoms & there are GMO and other problems with them (which I learned about at Years Restored and researching).  I recently joined a FB group called "Leaky Gut Health with Doctor Joyce" for added support and ideas.  There is hope and healing, but you have to get past the misinformation and hype of fad cures/diets /supplements out there.  The answer is really more simple than many imagine, but they have to be willing to change some habits and leave off what is harmful for good.  I wish you the best in health.

Edited by DCares
typos and clarity

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