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

Need Advice/help/ideas


smile

Recommended Posts

smile Apprentice

I dont know what to do anymore. For over a year Ive had stomach problems eg feeling sick, frequent bowel movements, tiredness etc. I was diagnosed with IBS, at the time I had two blood tests taken and was told my IgA was raised, but it was nothing to worry about. I have also been losing weight and an underweight. I just cant seem to gain weight, my arms, legs and wrists are very thin. Since then Ive seen a specialist who suggested I had crohn's, after a blood test, colonscopy and barium follow through everything came back normal apart from two areas of inflammation in the terminal ileum. So now Im left having no idea what is wrong. This has just been going on for so long and its depressing. I dont know whether I should ask for blood tests again and maybe the camera down the throat thing. Also Im in the uk, can you be put out for the camera down the throat, I dont think I ccould be awake for that. I have a phobia of being sick and a strong gag reflex. I just dont think I could be awake. Im just fed up of knowing that something isnt right, but been told there is nothing wrong.


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



Celiac.com Sponsor (A8-M):



Marz Enthusiast

Symptoms sounds familiar, definately could be celiac.

Raised IgA levels? Did you get a copy of those tests by the way? If it was total IgA, that would be useless but raised IgA anti-gliadin specifically would be cause for concern ! :)

did the tests done check for celiac disease? If not you can head to a doctor and insist on getting tested, especially with being underweight and chronically sick. Most docs won't know what to test for, so you may need to specify the tests you want, or request full celiac panel.

Option 2 if you don't get anywhere with the doctors would be to just try the gluten free diet? You'll have to be strict to see the results properly though, just eating a little gluten will keep inflammation going. Lots of good advice here, or just google "starting gluten free diet" for tips to avoid gluten ingestion and cross contamination :)

feel free to post any questions.

smile Apprentice

Thanks for your reply. I was never told whether it was the total IgA or not. I actually did try going gluten free for a while. It was back in april and I did it for a number of weeks, possibly about 9-10 weeks. As soon as I started it and for a good while my bowel movements went from 5+ a day to once or twice, sometimes even skipping a day. I still felt sick on the odd day and a rash that I had constantly on my chest cleared up. Now Ive been eating gluten again since the start or June and its lately that the bowel movements have increased, just these past few days the rash has appeared again (its not DH, no one knows what it is). I managed to gain a few pounds, but have lost it again. I have a specialist appointment at the end of the month, but not too sure if I should see my gp before then to ask for a blood test. I dont know if Ive been eating gluten long enough for it to be tested. Ive definately eaten more than 4 slices of bread a day, plus biscuits or cake etc.

Hyacinth Newbie

HI!

I'm new to gluten-free, and this forum, but what you are describing is the very image of what happened to my dad. He was sick for so long, and thin just like what you're saying you are. Doctors kept telling him he was fine. When he went off of gluten it took him like 6 weeks to even start feeling better. But once he did start getting better, it was like magic. I had my dad back again! Now he is feeling so much better, and has lots more energy.

He has to be really really careful though. If he eats something that even touched something that touched something with gluten in it, he'll be sick for 6 more weeks. Everything in his kitchen had to be thrown out and replaced, can opener, cutting boards, toaster, pots and pans, everything. And the counters had to be scoured too. He can't even be in the house if my mother is baking with wheat flour, the flour dust can make him sick.

I would suggest that you see an allergy specialist right away. It could improve your life drastically.

Hyacinth

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.