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Should I Start Eating Gluten Again?


Kirstie

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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


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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!

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  • Posts

    • Newhere19
      Thank you both. I haven't had access to the test results but will get them and post here.
    • jjiillee
      The ulcers are prepyloric ulcers. Not sure if that makes any difference. 
    • trents
      Duodenal ulcers are not uncommon either and often result from H.Pylori infections. https://www.healthdirect.gov.au/duodenal-ulcer
    • trents
    • Scott Adams
      I had what was termed "lesions," and normally ulcers are in the stomach, rather than the small intestines. I'm not sure why they would want you to have her continue to eat gluten, since she had a positive blood test, but as her doctor said, if she is uncomfortable and having symptoms why not have her go gluten-free at this point? If her symptoms improve, it would be another indicator that she has celiac disease and/or gluten sensitivity. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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