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

Help Please


Guest Nukapai

Recommended Posts

celiac3270 Collaborator

After vomiting, it's impossible to get the taste out of your mouth by brushing -- you still taste it in your throat. Usually I would drink a softdrink like Sunkist to wash the taste away, but I'm trying to avoid the sugar/carbonation combination, so I tried an altoid (gluten-free)........it happened to be the peppermint kind and it actually helped a little with the stomach......so, peppermint does help -- even when it's not in a tea, but in a small pill-sized altoid.


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Sorry for all the problems you are dealing with right now. I had almost all the same problems from childhood on. I was even getting IV's of iron 3 times a week because I was so anemic. Once diagnosed though I learned that gluten isn't my only enemy. Steer clear of oats, barley, anything malted (lots of rice things are), caramel color and Red 40. I know it sounds daunting, but I'm healthy now. I go in for my 1st check up in 2 years tonight so I guess I'll find out if my diet has paid off. As far as the pain goes try benadryl one that makes you drowsy, the sleeping makes it more bearable. Go to an Asian market or a natural foods store and find rice noodles. They're easier to cook than spaghetti, taste good w/ butter or a sauce if you can find one that is gluten-free and they taste good without making you sick. Also, applesauce is good. Steer clear of ordering out or a lot of microwaveable foods until you get your results. Good Luck and remember this is nothing compared to a lot of other things you could have. Atleast we can still have sugar!

Guest Nukapai

That's so sweet, jendenise :)

I have to just hang in there, going to see the doctor and discuss blood test results/next steps on Monday.

I still get sick when I try to eat more than a couple of handfuls of food at a time and even stuff that doesn't make my stomach burn still kind of comes out as diarrhea. EW.

I am frightened that there will just be no diagnosis and I get told "oh, it's just your nerves" or "IBS" because that will NOT help.

Private medical care might be the only option, but I will persevere with the NHS for now. See what the doc says on Monday.

jendenise Rookie

Well, I doubt if it's nerves, but it could very well be IBS or if it is celiac disease maybe you'rre accidentally eating things that are still bothering you. It takes a few months for the lining of your stomach to heal maybe milk/dairy is harming you too or acidic foods. Try starchy foods like baked potatoes, or white rice (with or without sugar or preserves) and maybe try to drink rice milk for a while the vanilla flavor isn't too bad for short term. Good luck though, I wish you the best, let me know how it turns out!

coin-op Newbie

to respond to the original post - your diet is out of control. Look at the safe and forbidden lists on this site for the basics of the gluten-free diet. READ INGREDIENTS. if you keep abusing your body, you will become critically ill, and that's no joke.

-cass

Guest ~wAvE WeT sAnD~

To Coin-Op: Oh, and I just wanted to add, from the diary post, a website called "milksucks.com" does NOT sound like a credible source.

jerickson Newbie

Does anybody have any good ideas for lunches to bring to work? I've been bringing cottage cheese with pears/peaches, rice cakes with peanut butter, but I'm looking for some new ideas to break up the monotony. Any suggestions?


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Do you have a microwave? If so go to Amys.com they hace gluten-free foods that taste really good. But not all of them are so make sure you double check before purchasing. Also, if you like tuna mix some up in a bowl with whatever you like in it (for me it's mayo pickles & onions) and take a little salad, use the tuna as your dressing, or take tuna w/ rice crackers. Egg salad w/ rice flour bread or tapioca flour bread is good too! Good Luck

tarnalberry Community Regular

I had leftovers for lunch last week, so it was chicken cacciatore, bean salad, and chili salmon stir-fry. And veggies, of course. :-) And soy yogurt (I'm dairy free).

You might try sitting down one weekend and brainstorming ideas... I found that really helped remind me of all the things I could take for lunch.

Guest Nukapai

Well, I've had two out of three blood tests back. The two that came back were for acute infections/stomach bugs. Those were clear.

I've now lost 20.8 pounds (or 10kg) in five weeks.

Went to doc's today, he looked really worried, examined me thoroughly weighed me (and said, helpfully: well look at it positively, if you had started at 7 stone you'd be in hospital by now and you're still overweight so you are going to be okay for a while, gee, thanks) ...and I am now being tested for gall stones, liver problems, bacterial overgrowth and something else. Next blood test booked for a week from now. He is also sending me for an ultrasound.

The celiac test results hadn't come back yet. Got to wait for a couple more weeks for those. :blink:

  • 4 months later...
Guest Nukapai

Update: still ill, in fact, kept getting worse until about three weeks ago I had to be taken to A & E in an ambulance because I developed a really bad flare-up of whatever it is I have wrong with me. I have lost a total of 18kg (or just over 40 pounds) now in weight since I got sick. And it's still dropping.

I now have a GI consultant at the local hospital and my endoscopy/colonoscopy are due to be performed on the same day, 23rd of March. So still a while to wait.

I feel sore and horrible and tired.... and have had enough, really. But somehow I've got to hang in there.

Now the interesting thing is, that I had an Enterolab gene test done in the meantime and they said I do NOT have the gene for Celiac, but I DO have the gene for gluten intolerance! I don't know whether this makes me someone who falls into that weird category of having gluten intolerance, but no Celiac.

The consultant at the hospital is looking for Celiac too - but his main suspicion is actually Chrohn's disease. :huh:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.