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 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
      130,127
    • Most Online (within 30 mins)
      7,748

    sue j
    Newest Member
    sue j
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of. Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's worth tracking. Thirteen years of elevated liver enzymes was what eventually led to my celiac disease diagnosis. But I was 50 years old by that time and it was my ALT and AST that were mildly elevated all that time, not my alk phos. I just found out last week from an ultrasound that my liver is 20% larger than normal and I'm hoping that is a legacy effect. I have more testing lined up. 
    • CeliacMom79
      Hi. Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against. All his other liver test functions have been normal.  Just the elevated ALP. Thank you.
    • NoGlutenCooties
      Hi all I'm looking for a safe place to eat in Wilmington, DE. Any ideas? Thanks Jenny
    • trents
      Welcome to the forum, @CeliacMom79! Not sure what you mean when you say you are pleased that his ttg levels are now at "detectable levels"? Earlier in your narrative you said they were originally above 250. Was 250 the upper limit of the scale that was used, such that you actually don't know how high they were originally, i.e. "off the charts"?  Were his other liver test functions (ALT, AST) originally elevated?
    • CeliacMom79
      Hello! This is my first time posting, but I have been so helped by the reading other's posts over the last 6 month. My 16 year old was diagnosed about 6 months ago with Celiac despite He had almost no symptoms aside from occasional loose stools and low weight gain. His tTg was over 250.  He also had anemia with abnormalities to his red blood cells, vD deficiency, elevated ALP and a few other nutritional findings.  He has had a couple of accidental gluten exposures in the last 6 months but overall has (as far as we know) been completely gluten free.  We scrubbed our kitchen down and replaced cookware at the time of diagnosis and our home is completely gluten-free.  We eat out only rarely and then at restaurants we know are aware of cross contamination. He is also not eating oats as a precaution until we get his numbers down. We were told by his Peds GI doc to expect normalization of his labs within 2 years. He just had his 6 month bloodwork and his tTg is now at 234.  All of his abnormal nutritional findings, the anemia and his blood counts have normalized. His ALP is still elevated (which we think may be a normal finding as he's been having a major growth spurt and further tests to check his liver function have been normal). He no longer has loose stools, he feels great and has grown 3 inches and put on about 20lbs in the last 6 months.  This all seems positive. I am happy that we now have his tTg at detectable levels, but I am wondering if anyone has had a level that is still this high 6 months post diagnosis? Thank you so much!  I appreciate this community.  
×
×
  • Create New...