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.

  • 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. - RMJ replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Pain in the right side of abdomen

    3. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    4. - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    5. - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

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

    • Total Members
      133,480
    • Most Online (within 30 mins)
      7,748

    radster47
    Newest Member
    radster47
    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

    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
×
×
  • 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.