Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

alephknot

Severe Symtoms, Coming From ? Please Help, Im New To This

Rate this topic

Recommended Posts

please bare with me, ive tried to consolidate this as much as possible. i really really need help, and you all seem to have good advice, with stories that have been comforting. please, anything would help, i feel extrememely frusterated, scared and alone.

i found out 4 months ago that i have celiac... went gluten free and my life changed in ways i coudnt have possibly fathomed. i had been depressed, anxiety ridden, fatigued, pain ridden, etc. etc. in and out of hospitals for multiple reasons including mental, for years. after going gluten free i thought i had found the answer to this vague yet all encompassing illness that has been ruling my life for the past ten years... and im only 24.

about a month ago, i started feeling like i was being continually glutened, which i wasnt.. i had severe symptoms of hypothyroid, yet i was already on synthroid, have been for years.. my tsh is .2 which doesnt mean poop i guess because i in no way am hyperthyroid. i just found out i have elevated antibodies, i have all the symptoms of hashimotos...

i tried armour, didnt really work... so i went back to synthroid which is the lesser of the two evils.. my moods and fatigue, not to mention body pain have been so severe ive come very close to checking myself in to the psych ward... a place i thought i would never have to go to again. i feel like i did six months before i was dx with celiac... totally hopeless, scared, alone... i feel like i do more research than my current docs about the connection between autoimmune disorders, thyroid, gut, and their relationship to psychiatric symtpoms/disorders...

and no one is giving me anything difinitive or that i can work with.... am i just supposed to wait? i seriously cant function.. ive had to take off work a bunch, im totally isolating, ive become extremely depressed, with panic.. my body hurts, im always bloated, i havnt taken a real poop in over a month! i cant remember anything, im slow, inarticulate.. and to top it off, ive gained weight, eating what i normally do... and considering the fact that ive had an eating disorder for 10 years, and i was finally doing better than ever (in a healthy way) now i feel myself beginning to obsess...

these symptoms are so very intertwined with all of my lifelong fears and struggles... being sharp, being functional, being thin, being able to make commitments and keep them, taking care of myself, not being the one who has hit bottom, again, and god knows how personal i take it when i dont feel validated... when i create and believe these ideas in my head where everyone (friends, doctors, family, co-workers) think im exaggerating, that what i am going thru is not as debilitating as i think it is. but how do you convince anyone of a situation that feels urgent.... when they have seen you get through really hard times before, times you have considered "urgent". its like, they see the end of the tunnel, and i am simply in it, blindfolded.

what i am sure of is.... i have a gluten intolerance, i have a screwed up thyroid, i have been taking lithium for 7 years, which i know has to do with hypo thyroid too, i have been diagnosed with multiple, and what i find now to be extremely questionable "mental illness's" . i now have all of these symptoms which feel are debilitating. i know deep down that this has to do something with my body, something is wrong, and its the same feeling i had for years before i found out about celiac... i knew, there is something wrong with my body, and i was at the ER or urgent care atleast 3 times a month for over a year, usually with a misdiagnoses of ulcers and abdominal obstructions.. and usually with a "this is all in your head"

ok, so i feel i must stop the rant.... i do thank and apologize in advance.

any of you, if you have any suggestions? or went though anything similiar? pleeeez.... im losing my mind here. and now that i got that taste of what it feels like to be normal, and healthy... ive never wanting anything so badly, and that is a huge change, and step for me.

thank you all so much, if you have made it to the end of this post.

kelly

Share this post


Link to post
Share on other sites

Kelly if you can, find a good Naturopathic Dr. They can test all of your hormones the best way. Hormones do not operate in isolation of each other. They are all connected.

My Sis is on Synthroid (has been for 7 years) but did not feel well until she added a small amount of Armour (7 months ago). Now she feels great. She is still on the same amount of Synthroid but added 30 mg of Armour.

My TSH is .008 right now and I finally dont feel hypothyroid anymore. And no I am not hyper either.

You may also have other food intolerance issues that are preventing you from healing. Dairy is a problem for MANY Celiacs. So is Soy. You might try eliminating Dairy for a month or so to see if it makes a difference. You can always try adding it back in at some point once you are well (if you want to).

I only tolerate goat milk kefir so far.

Corn is another one that causes a lot of folks trouble.

Believe me. Food intolerance can certainly cause "mental health" symptoms. I had em big time too.

I would also highly recommend you research SCD (Specific Carbohydrate Diet) as it has helped a lot of people with the digestive issues you mention. Me included. It is a diet to "heal" your intestines and take the burden off.

www.pecanbread.com

A lot of mental health issues also stem from vit/min deficiencies or excess. A good Naturopathic Dr. can help you find out what may be lacking or what's in over supply.

Share this post


Link to post
Share on other sites

Hi & welcome, just take a breath & know that you are going to be okay. Discovering that food has an effect on your health is huge, so you have to break it down into some managable steps.

your symptoms sound like DQ1 problems - a gene... some of us have two = IMO double trouble.

If I might suggest a couple of things.

Get your blood tested for vitamin & mineral levels - any variances will affect you mentally & physically.

start taking a gluten-free B12 and vitamin D, as soon as that blood is drawn for the tests, you are going to need additional B12 & D regardless of the tests... I like Carlson D.

Buy as many things organic as you can - while you are healing etc.

Eat plain whole foods - like meat, seafood, eggs, veggies, fruits, nuts & seeds.

Processed foods: If something has more than two or three ingredients, don't buy it. Really better not to eat any processed foods at this time, maybe when you are much much better.

Check into the SCD diet or Paleo - For Now...

Think about eliminating these foods - for now, soy, dairy, grains (except maybe some white rice - wash well & cook well).

eliminate sodas & artificial sugars

think about how you feel & what you have eaten to help discover other food intolerances, & or get some food allergy tests run.

Manage one day at a time.

Know that you might not get any help from the usual friends & family. This forum & others are full of people that have gone thru the same things that you are going thru. & most of us are loaded down with advice & helpful hints. All of whcich you can pick & choose from & do your own research. Some of us have been doing this for years & have learned "the basics" !! :) & we are now healthy & happy.

Remember you are young, you will heal quickly, once you sleuth all the CAUSES...

Share this post


Link to post
Share on other sites

Here are two things you might look into - http://www.glutenfreeforum.com/index.php?showtopic=36163

And - www.biotoxin.info

I hope you get to the bottom soon. Feel free to PM me .... I was undiagnosed for over 30 years so I completely understand needing answers, being considered crazy/hypochondriac, and really, truly having something wrong.

Share this post


Link to post
Share on other sites

You might want to get your thyroid levels rechecked again. As your intestines heal you might be absorbing more of your synthroid and actually be overmedicating yourself.

Also think about taking out the other big allergens; corn, soy, casein. Either all at once, or one at a time to look for lack of symptoms.

Share this post


Link to post
Share on other sites

Good advice here. This link might be helpful too.

http://www.loveyourbelly.com/resources/gut.html#05

Since you are diagnosed celiac we can assume significant damage to the villi; this likely means among other things that you are not able to digest carbohydrates. This leads to a lot of imbalance in the gut. So I also second the idea that you take a look at SCD or try a low carb approach. SCD would remove soy and reduce some of the problematic dairy as well. Soy has been shown in some research to damage the villi. The carbohydrate maldigestion could be the cause of your weight gain as well.

I think it is important to realize that all the parts of ourselves are interconnected. Your positive response to gluten-free is a great encouragement, and hopefully you will find the key in some of the advice already given. At the same time, also seek the best mental health you can because sometimes a psychological block keeps us from healing. I'm not suggesting more diagnosis, but simple good habits of stress management and positive self care. Also if you know you have experienced some traumas in the past, see if you can take some steps to deal with these. Dr. Klinghardt who has done a lot of work with lyme and heavy metal toxicity has written about how working on a psychological aspect can remove a block to healing.

Share this post


Link to post
Share on other sites

Alot of good advice has been given already.

I had a similar experience during the first 2 years of my illness. Lots of emotional instability, daily crying, rages, severe depression, major brainfog, etc. Everything was totally out of character for me and I was positive that there was something wrong with my body.....something physical....which was having a big effect on my mental state. I had become a completely different person in alot of ways.

The doctors were of no help to me. When they couldnt diagnose a disease they decided it was "mental"...so noone would listen...they would only urge me to see the psychiatrist. I was stubborn about this because I knew it wasnt the answer for me....and I did not want anti-depessants or any other meds. I wanted answers.

Eventually I gave in...and I saw the psychiatrist. She listened me to talk....and cry....and she said she couldnt help me. It was a PHYSICAL problem. I got really lucky with her. I think most would have just handed me a script for some anti-depressants. She told my Dr.'s that they needed to keep looking.

I ended up pulling myself out of it...without the help of any doctors. gluten-free wasnt enough for me...I had to eliminate alot of foods. Thats what did it for me though. Its been over 3 years now and I have never went back to having those severe mental symptoms and depression.

I went mostly organic, I rarely eat processed foods, I drink water, I avoid chemicals (household chemicals, fragrences, etc).

I also had/have thyroid issues and was diagnosed with Graves disease several years back. I spent a couple years adjusting my thyroid meds, taking different brands, t3/t4 combo, etc.... because originally I believed that my symptoms were caused by my thyroid disease. Nothing worked though. I didnt get better until I made the dietary changes.

Everyone is different and that might not be "the answer" for you....but its definately worth a try. :)

If your diet consists of alot of processed foods.....and if you're still eating dairy and soy.....it might be good to eliminate those things and see how you feel.

I still have alot of issues that I'm working on (including the food intolerances).....but the mental symptoms cleared up a long time ago....and those were definately the worst. I can deal with the other symptoms much better now that I'm not depressed.

Good luck! I hope you find out what works for you. :)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • May 18, 2019 Until May 19, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
    • May 22, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...