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

So Sick, And Not Sure Where To Go


ImagineEscape

Recommended Posts

ImagineEscape Newbie

I am at my wits end with this sickness. 

 

My story -

 

  • I was raised on junk food, tv dinners, cans of veggies, etc. 
  • Around 3rd grade my abdomen became shockingly distended, stretch marks and all. Never went away, regardless of overall body weight. I suffered constipation daily. I was very overweight.
  • As a teen, I suffered extreme D, lost a ton of weight for seemingly no reason. I went vegetarian around age 13, but I still ate the junk food my parents would buy, in large amounts.
  • D remained throughout college, to the point of me fearing going anywhere without a restoom nearby. I could not drink cold water or drinks without immediately having D. I snuck away from my dorm and used the general university dorm bathroom downstairs to avoid embarrassment. I could eat anything I want, in any quantities I wanted without gaining weight. I also experienced extreme nervous bowels. 
  • In grad school I changed my diet to whole foods, and went vegan. The lack of dairy improved things immensely. Now, when I "cheat" and eat dairy, I feel the effects obviously. I gained weight because of this whole foods diet, and struggle with controlling portion sizes as I used to be able to eat anything.
  • However, I'm still sick. No dairy, no eggs, no meat, all whole foods. I drink a green smoothie for breakfast, and eat healthy for lunch and dinner. I exercise. I am still so sick, so often, however.  While I finally have normal-ish bowel movements, they are closer to D than what I imagine they are for other people (they're usually a run-to-the bathroom asap or be sorry, but not pure liquid as they used to be)

I'm so sick of being sick. A really bad doctor who I talked to for 5 minutes said I have IBS. I finally talked to a doctor about my concerns with gluten, but she did not seem to take my concerns seriously in the least, perhaps because I am overweight. I was going to get a test done, but she made it very complicated and by the time I convinced her to schedule it, I lost my health insurance. 

 

I get headaches, stomach aches of all kinds, my immune system just seems to turn off for a week at a time - in which case I get rashes and feel awful, and I just generally feel sick. Just sick. Dizzy, disconnected, sick to my stomach, just sick.

 

I don't now if it is celiac, I am kind of hoping it is, so I will have a cure. Does any of this sound like celiac?

 

I still lack health insurance, however, so I suppose my only choice is to attempt a gluten-free diet to see what happens?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hello, and welcome to the board.  It does sound like gluten could be a problem for you.  Most doctors don't know that gluten can make you overweight and automatically dismiss the idea of celiac in someone who isn't skinny.  It actually can make you skinny or overweight.  Sorry you found one of these doctors.  It's no wonder we don't get diagnosed :rolleyes:

 

So unless you can conjure up some insurance from somewhere, or some funds of your own, it looks lke you might have to be content with just eliminating the gluten and seeing what happens.  Do be aware before doing this that if you are gluten intolerant, you will probably never be able to go back to eating gluten without suffering worse than you are already - our response seems to get worse after we have been off gluten (scientifically proven), so if you think you are going to doubt yourself down the line and need the diagnosis now is the time to do it.

 

Before trying the diet, read the newbie 101 thread here https://www.celiac.com/forums/forum/5-celiac-disease-coping-with/ as it has a lot of useful information to get you started.  I hope you are able to figure out if this is your problem and are feeling better soon.

Link to comment
Share on other sites
pricklypear1971 Community Regular

You can order the tests yourself from an online lab. Open Original Shared Link

 

If it's in your budget, and you can get to a lab draw location I'd try this before going gluten-free. Because if gluten-free works for you, I doubt you'll want to go back on it for testing later.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,989
    • Most Online (within 30 mins)
      7,748

    DanielleMM
    Newest Member
    DanielleMM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...