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

Is It Time To Call The Specialist?


LoveBeingATwin

Recommended Posts

LoveBeingATwin Enthusiast

Lately I have been really sick and can't figure out what is going on. I started a food journal last week so I could keep track of EVERYTHING that I am eating. My symptoms have been the big D, stomach pain and severe bloating. I eliminated soy and dairy but am still sick. I feel worse than when I started this whole journey.

I called the doctor in February and told them I was not feeling well and his nurse said that it could take 6 months to a year to feel better.(diagnosed in December 2006) I understand that when going gluten free, but I haven't had any gluten since being diagnosed and I am still sick. I am thinking I am having a reaction to some other types of food.

I am at the point where I am getting so frustrated I want to cry. I thought I was suppose to be getting better, yet I am feeling worse. My stomach is so umpredictable right now. It hurst all the time. What should I do? What if the doctor tells me I should wait again and give my body more time? What do I eliminate from my diet? Please help.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Kimberley, I am sorry you are still feeling so bad. You may want to follow my link on lectins, and try if it will help to eliminate all of them, at least for a while. It tells you what to do to then figure out which ones are the problem (it may be all of them, they are for me).

Are you sure you have eliminated all sources of gluten, in personal care products, vitamins, medications? Vitamin E is often derived from wheat germ oil and can be a problem.

ravenwoodglass Mentor
Lately I have been really sick and can't figure out what is going on. I started a food journal last week so I could keep track of EVERYTHING that I am eating. My symptoms have been the big D, stomach pain and severe bloating. I eliminated soy and dairy but am still sick. I feel worse than when I started this whole journey.

I called the doctor in February and told them I was not feeling well and his nurse said that it could take 6 months to a year to feel better.(diagnosed in December 2006) I understand that when going gluten free, but I haven't had any gluten since being diagnosed and I am still sick. I am thinking I am having a reaction to some other types of food.

I am at the point where I am getting so frustrated I want to cry. I thought I was suppose to be getting better, yet I am feeling worse. My stomach is so umpredictable right now. It hurst all the time. What should I do? What if the doctor tells me I should wait again and give my body more time? What do I eliminate from my diet? Please help.

What are you eating? Are you eating a lot of mainstream products or specialty gluten free? Have you tried eating only naturally gluten free unprocessed food for a while to see if that makes a difference? Do you consume grain alcohols or vinagers? Not all tolerate them.

Also make sure you are addressing the second hand gluten issue and check any craft or home remodeling materials?

Gluten can be such a sneaky thing. Don't assume any meds are safe either unless you call the maker. This is particularly the case with generics and all OTC tummy meds.

If you were diagnosed through blood work have they run it again to see if the levels of antibodies have come down? You may want to call your doctors office and ask for a script for the blood test, if you were positive on one to begin with, it can help show if hidden gluten is still sneaking in. You should not need an appointment to get this done or the results.

I hope you feel better soon.

chocolatelover Contributor

Kimberly,

I'm so sorry you're feeling so poorly! It just stinks to be doing everything right and then not have it work for you. I'm wondering if there are hidden sources of gluten that you might be ingesting accidentally. It can be in everything from toothpaste to lotions and shampoos and costmetics to the envelopes we lick.

A lot of people will do a complete elimination diet where you start with eating only certain foods and gradually (like every 2 or 3 days) add something new in. For example, start with natural foods that you know are gluten free--meat, fruit, vegetables, whatever your body can handle right now. Then gradually add things in one at a time and see how you feel. Something like the BRAT diet might be a good place to start (bananas, rice, applesauce, tea (most people know it as toast, but obviously that's not going to work for us, even gluten free toast might not be good right now)). What about dairy? It can really cause problems for many of us, especially the first 6 months or so...

The other thing to consider is that there is actually something else going on. I know that when I'm not feeling well, I automatically assume that it's related to the celiac, but sometimes it's not. You could have a virus, an overgrowth of bacteria, too much yeast, colitis. I guess I feel like it's worth checking out with the doctor--it's been a long time that you haven't been feeling well.

Feel better! :(

CL

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    Lostcha
    Newest Member
    Lostcha
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.