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

Should I Start Eating Gluten Again?


Kirstie

Recommended Posts

Kirstie Apprentice

I've written on here a few times so some of you may remember my situation so I'll just stick to the short version.

I have been suffering from a long list of symptoms for almost over 3 years now, and been to various doctors countless of times and not once have I been tested or diagnosed with anything. (AHH!)

So a little less than a month ago I discovered my symptoms are the exact symptoms of a coeliac (mouth ulcers, anemia, constant bloating, vomiting, nausea, the works...) So I immediately went gluten free, after a few slip ups and possible withdrawal symptoms in the first 2 weeks, I begin to feel human!!

Then I saw the doctor, she diagnosed me with IBS ignored all of my other symptoms but after a lot of persistence from me said she would reluctantly test me for coeliac, but I had to go back to eating gluten.

After leaving the doctors I felt so frustrated, and was finally beginning to feel better after being gluten free. So after lots of great advice on here (thanks :D ) I decided to start a food diary, book an appointment with another doctor who would hopefully be more supportive, before I went back on gluten.

Today I accidentally bought a salad thinking it was gluten free, but stupidly I rushed and never checked the label after eating it!! It wasn't gluten free, nor was the sushi I ate afterwards :angry:

I thought it would be interesting to see how I coped with just one small gluten containing meal, since I've been off the stuff for a bout a month and not even been formally diagnosed.

Well less than 30 afterwards I went dizzy, was overcome by brain fog and fatigue, blacked out for 2 hours and woke up a shaky, confused and sweaty mess when my boyfriend came home, surprised to see me in such a state.

I want to be formally tested with coeliac so I can receive the correct healthcare, understand what my body really needs and get the benefits of discounted food available here in the UK. But after eating just ONE small salad and a few bites of veggie sushi, I am fit for nothing and getting random but very sharp and painful stomach cramps.

How can I put up with this for 2-6 weeks in order to get tested? I have a job and studies and a life to live! :(

Please help! I'm new at this and everyone on here has so much experience and knows so much!

Kirstie x


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

It's possible that since it's been such a short time that a blood test would come up positive, and some doctors may confirm with that. A negative though means nothing, many people (including me) come up false negative. Since you feel better gluten free your doctor should consider that evidence, but clearly has no interest in doing so. A different doctor may, but then again may not. If you can live life happily without a confirmed diagnosis, stay gluten free. If it is something you need then you may have to go back to all the awfulness for a few weeks.

MitziG Enthusiast

Well, it seems clear that you can't do a gluten challenge. The above poster is correct, if you test NOW, there is a chance it can be positive. Depending on how high your antibodies were to begin with will make the difference. Some people will have elevated antibodies a year after going gluten free,m others may be at zero a few weeks after stopping gluten. I think you have nothing to lose by trying. Keep a food diary as well so that you can document your symptoms to the doctor as that may influence him

If it is possible to get an endoscopy, that may reveal damaged villi still. They too will heal quickly, and it depends on the extent of the damage to begin with, along with your bodies rate of healing.

Hope this helps!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.