Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Venting Again :P


jasonD2

Recommended Posts

jasonD2 Experienced

I am completely consumed with my health..to the point where I have no life and nothing else matters. I spend hrs on the web every day looking up stuff and just cant back to my old self. I am spending a fortune on supplements, IV nutrients and tests. Ive had every test known to man these past few months...endoscopy w/ biopsy, colonoscopy, ultrasound, organic acids, nutrient deficiency, Lyme, HIV, Hep A-C, etc. So far nothing bad found, yet I just cant get better. The main focus now is parasites..I have 5 of them and one in particular might be causing a lot of my problems (Blastocystis). I feel like this is self inflicted...back over the summer I was trying extremely hard to eradicate some yeast & c.diff overgrowth so i went on a no sugar/low carb diet and took a bunch of supplements..well, in trying to solve one problem I created 3 new ones...parasites and gastritis and more food sensitivities. I now cant eat fruits or avocados or corn. My gastritis has been so bad that ive been eating baby portions of food- thankfully with the help of a product called Mediclear Plus ive been able to tolerate larger meals. Now I am about to start a regimen of antibiotics/antiparasitic drugs and god knows what they will do to my body..again i may treat one thing, but creat 10 new problems.

I have no balance, I feel off center and every aspect of my life is suffering..job, family, friends, social life...my parents are sick of hearing about my health but they are supportive at the same time. I constantly go over things in my head...if i do this can i do that, if i eat this will this happen, if i dont eat this will it help that, etc. Am I just wasting my time? should i just throw in the towel and say the hell with it and accept that im always gonna feel like crap? I dont know what im doing anymore...I'm so far from the person I used to be.

thanks for listening as always


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jackay Enthusiast

Jason,

I'll be praying for you. I can relate to what you are saying because I felt like I had no life for four years. I spent hours online trying to find help. I don't have all your health problems but I thinnk I understand your pain.

I wish I was good with words and I'm not. I do want you to know I care and do hope you can find relief soon. Hang in there.

Jackay

butterfl8 Rookie

Hugs. And vent away. I hope this next round of meds does the trick for you, with little harm and much help.

-Daisy

Wolicki Enthusiast

Jason,

I am so sorry that you continue to struggle. I can tell you from experience, I've been there and done that. Just a little about my journey, for some perspective:

I am 43, and a single Mom, raising 2 boys 100% alone. Their father is not involved, both my parents died in the last 5 years, and my siblings are far away.

10 years ago, I got sick. And I stayed sick for 10 years. I went from doctor to doctor and no one could fix me.

8 months ago, I weighed 97 pounds. I am 6 ft tall. Docs finally figured out it is Celiac. I started to get better, but all hell broke loose once I started to recover. Every hormone went bad, kidneys went bad, I was a wreck. Then I woke up 35 pounds heavier one day. A week later, I gained 18 pounds in one day. Today, I have at least 60 pounds of extra fluid in my body. And it sucks. And it hurts.

For months, I just cried a lot. Feeling out of control and hopeless. Docs couldn't figure it out, I spent hours on the internet every night,and nothing.

Then, I realized that I need to "stop the stinkin thinkin," as Zig Zigler would say. And it worked. Most days, I feel pretty good, even though I am still struggling with recovery from malnutrition and leaky gut.

Why did I share all of this? I know that you have had a very tough road, and it might not be over yet. With luck, the treatment for the parasites will work, and you'll be on your way to health. But, in the meantime, you really do need to try to focus on the positive. I know you might not see a lot of positive right now, but it's there.

My suggestion is to seek a qualified counselor or therapist. I think you could probably gain some really good coping skills, and how to maintain a positive attitude. If you're one of those who "poo poo" therapists, please reconsider.

My first experience with a therapist was a few weeks after the Northridge Earthquake. I lived 3 miles from the epicenter, house destroyed, and the aftershocks were just killing me- I couldn't cope. I tell you truly- one visit with a Red Cross Counselor and I was 99% better. She asssured me that my fears were normal, gave me a few ways to cope and, in short, helped me to get my life back.

Please think about it. I think it could do you a world of good.

Janie

jasonD2 Experienced

Thank you Janie- very admirable that you raised 2 children and battled your health problems at the same time. I am an only child and was raised by my mother (dad died when i was 9) so I can relate even more so to where you are coming from.

Therapy is definitely on my list, just gotta find someone Im comfortable with. Also all my nutrient deficiencies are contributing to my depression, so hopefully once those balance out I will start to feel better.

When I was getting my IV therapy today I shared a room with an older woman who was seriously ill...im thinking cancer. she was there with her son and had a very healthy attitude despite her condition. this put things into perspective and made me realize that things arent so bad, but sometimes i just get trapped in the zone and it takes a while to pull myself out..im hoping therapy will help me pull myself out quicker or better yet prevent me from going into that dark hole.

Thanks for sharing your story and good luck :)

Wolicki Enthusiast

Thank you Janie- very admirable that you raised 2 children and battled your health problems at the same time. I am an only child and was raised by my mother (dad died when i was 9) so I can relate even more so to where you are coming from.

Therapy is definitely on my list, just gotta find someone Im comfortable with. Also all my nutrient deficiencies are contributing to my depression, so hopefully once those balance out I will start to feel better.

When I was getting my IV therapy today I shared a room with an older woman who was seriously ill...im thinking cancer. she was there with her son and had a very healthy attitude despite her condition. this put things into perspective and made me realize that things arent so bad, but sometimes i just get trapped in the zone and it takes a while to pull myself out..im hoping therapy will help me pull myself out quicker or better yet prevent me from going into that dark hole.

Thanks for sharing your story and good luck :)

That's why we're here to razz you and remind you :P Makes me think of Cher in Moonstruck: "Snap out of it." (meant with care and concern). Have you asked friends/family for a referral to a trusted therapist? That's sometimes a good route.

I am feeling positive for you! Try to walk on the sunny side, as I am sure you will be feeling better very soon.

sandsurfgirl Collaborator

Keep on venting. You will find the answer! Maybe the antiparasite meds are the answer. I have been praying for you and will continue to pray that you get healing and get back to your former healthy self.

I agree about the therapy. It can really help to have someone to talk to and help you put things in perspective.

It's hard to stay positive sometimes when you feel awful. It's hard to know when to keep reading and looking for answers and when to walk away from the computer and just live life. It's important to find joy in small things. Like today I went outside with my kids and played croquet. We sat around and enjoyed the sun and the quiet and it was great. It got me out of my head and my own confusion and worry about feeling sick.

Find some things that give you peace. I also have been reading some great novels lately that have taken me out of my head too.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mskedi Newbie

First off, feel free to vent here as much as you want so you can ease off venting to people you see daily. Sometimes people hear complaints from one person so much they start getting annoyed, but on a message board, if you get to that point, people can just skim. :) Also, most of us empathize to at least some degree since we've all suffered mysterious symptoms pre-diagnosis, so you're in good company here.

Second, I think the idea of finding a good counselor or therapist is a good one. You've got real health problems going on, and your concerns are valid, but I worry about how unhappy you sound in your posts. I'm not saying you have no right or reason to be stressed and discouraged -- based on what you write, I understand -- but maybe someone can help you bring some balance back in your life and help you see things from a more positive viewpoint.

I wish you well.

kareng Grand Master

Hey Jason. I agree with the person who said to find small joys. When I'm depressed with this, I try to just go outside & watch the birds & my dog (not as sick as that sounds - he ignores the birds). Accomplish something little - clean & wipe out 1 shelf in the fridge, 1 load of laundry, etc. Also, you might check some of the churches in your area for counseling help. We have a large church here & you don't have to be a member to go to the support groups for illness. Some hospitals have groups like that too. Good luck!

ciavyn Contributor

Oh what the heck, I'll add in my $0.02. You are going through a traumatic experience, and it's normal to feel frustrated and overwhelmed. And with all the work and research you are doing, you will eventually find the answer...and seeing a therapist would be a great move. Not just because it may help you get better perspective and learn coping skills (thank God for mine -- she's why I'm still here today!) but also because that clear mind and fresh perspective may help you on this journey to see something you or your doctor missed, or just didn't see yet.

Good luck, and I don't blame you one bit for venting. I'm the same way when I'm frustrated and feel like crap.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

    3. - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

    4. - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,635
    • Most Online (within 30 mins)
      7,748

    DWZ
    Newest Member
    DWZ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.