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

At A Complete Loss. Can Anyone Please Relate.

Dellers

By Dellers
in Coping with Celiac Disease

Recommended Posts

Dellers Apprentice
Dellers
Posted

Hi I have always had problems with going to the bathroom etc. When I was pregnant with my daughter things got really bad and after that I was getting fatty diarrhoea on a daily basis.Constantly tired I could sleep for 14 hours and still be tired. Urgency also. My skin was terrible always breaking out and my gums bleeding. People would comment that I always look pale. Before my pregnancy I was 13 stone a month after having my baby I was 11 stone ( sick all pregnancy) When things were at the worst I was constant bloated and stomach pains then run to the bathroom. I said to the doctor I thought it was lactose also as that seemed to tigger it off also. I done a diary and things that caused it was gluten related. Even past episodes of it came back to gluten. So I got tested and my IgA was only 0.4 so not even close to gluten related. I have been gluten-free for about 9 months now and felt fantastic ! untill I got gluten and for about a week later. I was still sick. I am getting the camera on wednesday so back on gluten and feel terrible. Going to the bathroom 4+ times with diarrhoea and belly pain. Constant taste of sick in my mouth. My stomach is huge. I was in hospital two weeks ago and people asked me when I was due ! my skin is breaking out again. For the last 3 days my poop has been a light sandy colour. I am getting dark black specks in the poop with come lumps that look like coal. Can anyone please relate to this. I am desperate to find out what is going on with me.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Well it sounds like your in the right place. You felt better gluten free and see symptoms return when you accidentally get gluten and feel horrible on the challenge. No matter what your test shows you need to get back on the diet after the test is finsihed.

Please be aware that even though your symptoms are back it doesn't mean that the camera scope will show that you are celiac. How long have you been doing the challenge? It is advised for the challenge to last at least 2 months and even then the scope may be a false negative.

When they did the blood test did they do a total IGA? If your total IGA testing shows you are IGA deficient it will cause a false negative on the blood tests.

Dellers Apprentice
Dellers
Posted
  • Author

Well it sounds like your in the right place. You felt better gluten free and see symptoms return when you accidentally get gluten and feel horrible on the challenge. No matter what your test shows you need to get back on the diet after the test is finsihed.

Please be aware that even though your symptoms are back it doesn't mean that the camera scope will show that you are celiac. How long have you been doing the challenge? It is advised for the challenge to last at least 2 months and even then the scope may be a false negative.

When they did the blood test did they do a total IGA? If your total IGA testing shows you are IGA deficient it will cause a false negative on the blood tests.

I hope this works. I asked my doctor for my blood tests and It just said IgA 0.4 then under that it says (SPS) -STATISFACTORY. Then again on the next line anti-tissue Transglutaminase ( tTG ) NOTHING BESIDE THAT. I have only gone back on gluten for the last few days and I feel terrible already. Do you think I should change the date for the camera ? I hate this I cant leave the house encase I need the bathroom.

ravenwoodglass Mentor
ravenwoodglass
Posted

I hope this works. I asked my doctor for my blood tests and It just said IgA 0.4 then under that it says (SPS) -STATISFACTORY. Then again on the next line anti-tissue Transglutaminase ( tTG ) NOTHING BESIDE THAT. I have only gone back on gluten for the last few days and I feel terrible already. Do you think I should change the date for the camera ? I hate this I cant leave the house encase I need the bathroom.

Let your doctor know how the challenge is effecting you and ask if you should continue. If your date for the camera scope is less than a couple months away if a doctor derived diagnosis is important to you then you should talk to the doctor about rescheduling. That said you don't need the doctors permission to eat gluten free. If you are in an area where you can get financial assistance for gluten free food then the choice is up to you whether to continue. Do keep your doctor advised of what is going on with the challenge. Also do ask if they did the total IGA and if they didn't if they will do it.

Dellers Apprentice
Dellers
Posted
  • Author

Let your doctor know how the challenge is effecting you and ask if you should continue. If your date for the camera scope is less than a couple months away if a doctor derived diagnosis is important to you then you should talk to the doctor about rescheduling. That said you don't need the doctors permission to eat gluten free. If you are in an area where you can get financial assistance for gluten free food then the choice is up to you whether to continue. Do keep your doctor advised of what is going on with the challenge. Also do ask if they did the total IGA and if they didn't if they will do it.

My camera is on this Wednesday coming. My doctor does not care to be honest.I was told on the first day seeing him its ibs ( without any tests done) also I had a urine infection and the meds he gave me gave me terrible headaches. that was apparently funny. He is useless I only reason I got referred to the hospital now was that my pains were so bad I went to A and E. I get no assistance for gluten free food we have been buying everything.

lpellegr Collaborator
lpellegr
Posted

Stick with it until you have the procedure done, then regardless of what it shows, if you feel better eating gluten-free, then that's what you should do. More and more evidence is coming out that humans in general have trouble processing wheat, and many health problems are starting to be linked to wheat. Don't go broke buying gluten-free breads, bagels, mixes, etc - instead of substituting these things do without them and eat fruits and vegetables, meat, cheese, eggs, nuts. People in this forum will be a great help.

Dellers Apprentice
Dellers
Posted
  • Author

Stick with it until you have the procedure done, then regardless of what it shows, if you feel better eating gluten-free, then that's what you should do. More and more evidence is coming out that humans in general have trouble processing wheat, and many health problems are starting to be linked to wheat. Don't go broke buying gluten-free breads, bagels, mixes, etc - instead of substituting these things do without them and eat fruits and vegetables, meat, cheese, eggs, nuts. People in this forum will be a great help.

Thank you for your reply. Gluten free things are expensive but we have been making our own bread etc. It took a while to get it somewhat edible but it was lovely. Everyone loved our home made gluten free wedding cake.It turned out perfect ! I just have to stick with it untill its over. Since going back on the gluten I cant sleep at night and I am constantly sweating . It was nice to have a burger though :)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,381
    • Most Online (within 30 mins)
      7,748
    AHD
    Newest Member
    AHD
    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

    • lauramac
      COVID19 and getting glutened

      By lauramac · Posted

      I was diagnosed with Celiac Disease abput 10 years ago. When I was initially diagnosed my only "symptom" was persistently low iron (that occasionally dipped into anemia). After diagnosis,  over time, I started to develop symptoms when exposed to gluten--they have been overall relatively minor, but have increased over time (and yes, I realize my guts are likely being wrecked regardless of the symptoms) on the rare occasions I've been exposed to gluten. I had COVID19 last week (now testing negative) and was glutened last night (never trust anything labeled gluten-free in a mixed environment). I had my traditional symptoms (sharp gas pains, burping, nausea, stomach ache) but they were accompanied by new, more intense symptoms (muscle cramps all over my body--feet, calves, biceps, neck, shoulders, jaw, abdomen, I'm still sore today and cold sweats). I spent about 6 hours writhing before I felt well enough to get up.  I have been told by my allergist that COVID19 can cause your immune system to hyper react. I'm wondering if that's what happened here.   Has anyone else had experience getting glutened post COVID19? Relatively shortly after recovering from COVID19? Was it a more extreme reaction or same? I can't seem to find any articles on this, so I thought I'd ask the community.  Thank you!
    • Rogol72
      Draft gluten-free ciders… can they be trusted ?

      By Rogol72 · Posted

      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
×
×
  • Create New...