Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

How Do You Cope With New Symptoms?


LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast

Hi all,

 

I used to consider myself brave but not any more. I am so worried about everything these days and I admire so much strong kids and adults on this forum. 

 

I cannot stop thinking about doctors because I am scared of possible new diagnosis because I have been experiencing other symptoms. I am so terrified to even write down what I am scared of. Tomorrow is my MRI and while I want to hope for the best, I am so scared. I go back and forth when thinking about it and trying to find reasoning for some of my symptoms. I experience so many emotions and I have never felt fear like this before and I have been though a lot. Lately, all my emotions seem so heightened, I feel like someone is choking me, probably get an anxiety attack and just start crying. When I went to see a doctor, i just started crying because of my body feeling weak and being scared. I am horrible at hiding how I am feeling so my family can see if I am not doing well, which hurts them, so then I am worried about their well-being.

 

Hope that all of you that are going through a tough time now, start feeling better soon.

 

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

I'm so sorry to hear you are going through this. :(

 

I wish I could give everyone a bit of my "ostrich syndrome". Over the years I have gotten really good at not thinking about things that would bother most people. Maybe I should call it Scarlett syndrome instead, as in Scarlett O'Hara's famous saying - "I'll think about it tomorrow."

 

I have no insurance so I can't get tested for the new things that have popped up in my health. I use Dr. Google, which can be a real problem for some folks. They scare themselves silly! But I just don't worry. For example, I'm pretty sure now that I have Lupus. It runs in the family (grandmother, an aunt, and an uncle.) The arthritis in my wrists and fingers that seems to move around, the fatigue, the rash on my face, the occasional unexplained fevers, those all add up to lupus.

 

Is it? Maybe. Probably. I don't know. I wish I didn't have these symptoms but there's not much I can do. My aunt who has been diagnosed with it has the same "ostrich syndrome" that I do. She just says the doctor is wrong and she doesn't have lupus because she doesn't want to have lupus. She takes asperin for the pain and stays away from the doctor as much as possible.

 

So how does all this help you? It probably doesn't. (I'm sorry.) But because you are relatively new I am hoping that these new symptoms are just another manifestation of celiac and you will get better soon. In the meantime, try to stay busy. Read, watch a funny movie, look at cat videos on Youtube. Take a walk, take a drive, call a long distance friend you haven't talked to in a while. Tomorrow is soon enough to start worrying and before you know it the MRI will be over with and you'll have the results. Here's hoping and praying that the results will be good.

 

(((((HUGS)))))

Link to comment
Share on other sites
icelandgirl Proficient

Hi Looking and big (((((hugs))))) to you.

I would like some of Barties ostrich syndrome as I do tend to not deal well with new symptoms myself. I can handle it for a bit but after a few weeks I start googling and panicking. I'm also a very emotional person and can't hide my fears no matter how hard I try.

I'm not sure what you are being tested for tomorrow but I hope for you that your MRI goes well and that the results are not what you are worried about.

Have you had full thyroid testing? I ask because when mine has been out of whack my anxiety gets really bad...like what you're describing. Just a thought.

Please let us know how it goes...will be thinking of you and hoping for the best.

Link to comment
Share on other sites
LookingforAnswers15 Enthusiast

Thank you Bartfull and Icelandgirl. I am getting ready to go to see a doctor and i am already an emotional wreck trying to hide it as much in a front of my family. 

 

So, i read my horoscope, which I never do, hoping I will get something positive. It said "An unexpected twist of fate might be a wake-up call from your future, reminding you to keep everything in proper perspective. When life hands you lemonade, you should be grateful and drink it." I cannot say that i believe in horoscope but i really did not need to read this today. Even tv shows and fb posts were related to my fears. Have to go now... thank you for thinking and praying for me.

Link to comment
Share on other sites
LookingforAnswers15 Enthusiast

Dear Eloise,

 

thank you so much! You are super sweet and your kindness and maturity really impress me. I feel ashamed to be complaining so much when I see you being so brave. And yes, I am also a girl =) but much older than you.I guess I should consider myself a grown up =). I think you are one of the bravest people. I truly hope and pray that everything works out for the best for you as well. A prayer that you have already said for me means more than you think, so please don't create work for your sister to light a candle for me. I would rather have her light an extra one for you. Every time I read any of your posts, I say a prayer for you. You are so good at writing to people and encouraging us. Your parents have an amazing kid =). Sorry for not responding to your bucket list, but I also think it is great and with your attitude and strength, I believe you can achieve anything you set your mind to. I trust in your doctors and I really hope everything will work out. You have a lot of friends here now praying for you, including your new friend :). Hugs

 

 

Update:

I went to see a dr./ a neurologist. Did some basic tests but an MRI machine was out of service so i have to see when I can get it done this week. I am doing better, just need to get it out of my  mind as much as possible. I walked back from the dr.'s office to clear my mind. Sorry for freaking out but you all helped more than you know. As most of you know, we try to protect our families and friends from our worries but we need someone to talk to especially someone who has faced similar struggles.

Thank you again.

Link to comment
Share on other sites
icelandgirl Proficient

Hi Looking,

I hope that you are able to get the MRI done this week to get some answers. I find that walking is one of the best things for my mind as well. Please don't apologize for freaking out. Let it all out here. We are here to listen and support you! (((Hugs)))

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...