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Alan1012

I Feel Different When I Cut Out Gluten But I Still Feel Bad

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I've been gluten free for over five years. At first it seemed to help me but I have anxiety/paranoia issues that are much worse when I'm gluten free.

 

When I eat gluten some of the effects are I feel numb (emotionally and physically), slow, and people and objects appear very strange visually. I Involuntarily jerk my arms and legs and get mild to severe muscle pains (particularly in my left elbow). 

 

When i'm not eating gluten some of my symptoms are I feel very sensitive to physical pain and my emotions shift extremely rapidly. I also have racing thoughts and rarely feel full after eating. I'm lost 15-20 pounds over the last 5 years of being gluten free (most of it was during the past two years and could be related to problems with frequent urination).  

 

It seems that gluten slows me down and avoiding it speeds up my thoughts but in my experience going gluten free alone has not fully addressed my issues. I've tried many other diets including being gluten free and vegan, as well as paleo (I feel best on paleo but still not normal).  

 

I could type a lot more but I'm trying to keep this as simple as possible. If anyone has any questions that might help with my situation I'll try to answer them. 

 

Has anyone else experienced anything like this? Does anyone have any idea what could be causing me to feel this way or any advice?

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Welcome! Have you been diagnosed with celiac disease? Five years is a long time to not have symptoms improve on a gluten free diet. What does your doctor say?

We are not doctors on this forum and really can only offer just practical and personal experiences of avoiding gluten due to celiac or NCGI disease.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Hey cyclinglady, thanks for responding, 

 

I have not been diagnosed. I tried to eat gluten again after being gluten free in order to get an accurate test but I quit after 14 days because I felt too bad to continue. I haven't been diagnosed with NCGI either but I've assumed that that's what I have for a few years. 

 

My symptoms have improved but I don't feel anywhere near normal. 

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Okay. My husband has not been formally diagnosed. But he feels great after being gluten free for 14 years. He feels awful when he accidentally gets glutened. So, this leads me to believe that you might have other issues going on. What does your doctor say?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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The doctors I've seen haven't been able to give me an accurate diagnosis. One gastro told me to eat gluten and dairy and take a probiotic and fiber supplement. Most of them say to avoid it but they don't have any long term solutions that have worked for me. I've felt best on paleo and raw diets so I think I may have problems with carbs. But in general even being gluten free I feel paranoid, anxious, and weak. 

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Hi Alan.  

 

Welcome to the Forum.  

 

Have you ever had your B12 or iron levels checked?  If these are low they can really affect anxiety levels - please get them checked if you haven't.

 

I suffered from severe anxiety about six months before my diagnosis and obvious gastro symptoms started. (racing thoughts, weird physical sensations, waking up with my mind racing, phobias - all so odd as my life was going well at the time).

 

So before my diagnosis I was put on supplements and I really believe that helped tremendously.  And once I realised I was suffering from anxiety I did a lot of reading about it on line and found this website indispensable.  

 

http://www.anxietynomore.co.uk/

 

Anxiety is something that affects people without gluten issues as well of course.  But I think in my own case understanding how it worked was a real step in the recovery process and Paul David's website and book was a great help.

 

All the very best. 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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I've probably had my b12 and iron levels checked before but I haven't recently. The multivitamin I'm taking now has iron and I could add a b12 supplement, I've used them before. 

 

cristiana, do you still take b12 and iron supplements? Did going gluten free help with racing thoughts and phobias?

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Welcome to the board! I'm sorry that you're not feeling well.

 

Some questions:

1)When you went gluten free, did you clean out your kitchen entirely, replacing old wooden spoons, scratched up pots, colanders, cutting boards, reseasoning cast iron pans, etc?

2) Are you careful to buy products that are not likely to be contaminated with gluten?

3) If you have a spouse or a significant other who eats gluten, do they take the necessary precautions not to contaminate you with their food?

4) What about pets? If you have cats or dogs, do they eat gluten free? If they eat gluten food, do you wash your hands after handling their food or petting them? 

5) When you go to restaurants, do you stick only with restaurants that can serve celiacs safely? Do you ever eat at potlucks or buffets? 

6) Do you eat food prepared by others?

 

It could be that you have an additional issue besides the gluten, but it's best to examine first and see if any gluten is sneaking in your diet. The first four years of being gluten free, I did not understand everything about avoiding cross contamination and made a number of mistakes. After fully cleaning gluten out of my diet, I feel so much better. 


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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It's my understanding that, in order for your gut to heal, you need to remove other "inflammitory" foods as well as gluten. I went paleo with a focus on soups, and took L-Glutamine and Seacure and my gut healed greatly within 6 months. Cut out the grains and sugars for now and buy some Seacure (it works wonders).

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I also have trouble with anxiety, which was much worse before I went gluten free, but is still something I have to deal with 6 years on.

 

A few possibilities:

- as others said, you might need to be much more strict with your diet. Go through your kitchen and throw-out/replace anything that could be contaminated. Try cooking for yourself for a month to see if that makes a difference. cross-contamination might not do much once, but if you're eating out frequently then you could be getting hit more than your gut can handle. It's hard, but a full cleaning out can really make a difference.

- you could have another intolerance. I've had to cut out dairy and soy. Soy especially gets my anxiety symptoms going. You could try cutting one or both out for a few weeks and see if that makes a difference. Maybe it's something else? Try keeping a food diary and seeing if anything sets your anxiety off.

- the third, and maybe more difficult to face, is that you might have an anxiety disorder that might be affected by gluten, but isn't going to get better with diet alone. Talk to your doctor, or see a psychiatist about whether therapy and/or medication might be right for you. Honestly, it took me a long time to accept that my anxiety was more than just my gut being unhappy. There's help out there.

 

Anyway, it can be a lot of work to get it all figured out, but it's worth it in the long run.

Good luck!


~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.

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Could you be experiencing low blood sugar? Your symptoms seem similar to the ones I experience when I get low. I'm diabetic so I have to be aware of the amount of carbs consumed. I get very anxious and have muscle twitches when my blood sugar drops. Try a spoonful of honey when you feel anxious or twitchy. If it is low blood sugar, you should feel better within twenty minutes.

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I had the same experience as PegLeg84 when it comes to food intolerances.

 

I do not tolerate grains well, but for whatever reason, if I have corn specifically, it increases my anxiety levels unbelievably. I will literally wake up anxious for no reason the day following corn consumption, and feel anxious for the entire day, sometime two if it was a lot of corn. And then it just disappears if I stay off the corn. Very strange, and I have no explanation for it. But I have met others who have mentioned similar experiences, with food consumption of some kind tying in to increases in anger or anxiety typically. The most common I've heard were grains, dairy, or soy, at least among my acquaintances. Haven't heard anyone able to explain it well, though, so it's all anecdotal and speculative.

 

Nutritional deficiencies might be really worth looking at. If you get vitamin levels tested, you might want to get a copy of the test results. My PCP and I have had some discussions about vitamins, and he happened to mention that in med school, he was taught that vitamin levels caused no problems unless they were significantly deficient. But in practice, he had a few patients with borderline low vitamin levels report back to him that their symptoms/problems had improved significantly when they took supplements of these same vitamins, so he no longer believes this is true. He tends to recommend trying a supplement for borderline vitamin levels now for some of his patients who have symptoms that match those of low vitamin levels. So, it might be worth looking at that, perhaps.

 

 


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Alan, I went to this too. With the carbs and sugar. I bet you have candida. Candida overgrowth will cause a gluten intorlerance, eliminate high carbs and sugars. Stay away from gluten-free bread products and make them a delicacy, they way high in carbs too.

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