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Do The Challenge Symptoms Ever Ease Up? Just Need Support :(


littleburgy

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littleburgy Rookie

So I'm now on day 3 of my challenge and if I ever doubted I had a problem with gluten, I am not now.

 

I was only off the gluten for about 2 weeks and I'm a little surprised at how uncomfortable and crummy I feel. As I understand it, the longer you are off the gluten, the worse it is to go back on. 

 

I am having a hard time with this today. Do the symptoms ease up at all? Is this just body shock from getting the gluten back?  :(


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nvsmom Community Regular

:( unfortunately the symptoms don't ease up in most celiacs, we just get used to them. Feeling poorly becomes the new normal.

Hang in there ad don't over do it. One or two slices of bread, or the equivalent, is all you need. Try eating in the evening so your days aren't as bad.

Good luck!

ravenwoodglass Mentor

Sorry you are having to go through this. If your symptoms get extremely bad do contact your doctor as they may cut the challenge short (especially if you had positive blood work) or the doctor may be able to give you some meds to get the symptoms bearable enough to do the full challenge. 

 

I was also only off gluten for about 2 weeks when I did my first challenge. My symptoms were severe enough that the doctor stopped the challenge, told me never to touch gluten again and referred me back to my GI doctor. The second challenge demanded by my GI caused an even more severe reaction than the first one did. That one had to be cut short also so I don't know if things would have leveled out if the challenge had been continued. 

littleburgy Rookie

Is there a possibility I could cut this challenge shorter? I had been off gluten about 2 weeks. Prior to this I was eating it all the time. For example maybe just get the levels back up for a couple of weeks and then get a test?

nvsmom Community Regular

Some seem to think a challenge can be shortened if one eats more gluten (up to 4 slices of bread per day for 2 weeks for the biopsy or 6 weeks for the blood test) 

ravenwoodglass Mentor

Is there a possibility I could cut this challenge shorter? I had been off gluten about 2 weeks. Prior to this I was eating it all the time. For example maybe just get the levels back up for a couple of weeks and then get a test?

If you were only off gluten for two weeks you should talk to your GI, or ask to speak to a nurse on the phone who will relay the info to the doctor, and ask this question of them.

I don't think you would be fully healed in just two weeks so the doctor may shorten the challenge...if they can fit you in for an endo quickly. Stress the severity of your symptoms and ask to be put on a cancelation list if you are able to get to the endo with little notice if your sceduled biopsy is a few weeks away. 

littleburgy Rookie

I'm doing better today. It may be just getting used to the way I was before. I felt so wonderful the 2 weeks I was off gluten it was like: WOW! And suddenly.... UGH! NO!!!

 

Unfortunately I'm on the NHS in England and the GP may still want the blood test first before requesting any other testing. It wouldn't hurt me to ask, but they're a bit bureaucratic and step by step about diagnosis and spending money on it.

 

A lot of my symptoms are eczema related and last night I was flaring up very badly and was so uncomfortable. And I also was so bloated I looked like I was pregnant, and my face was bloating as well. My husband used the term "horror movie" to describe how fast I changed once I went on the gluten and I got kind of mad. :ph34r: He didn't mean to upset me but I guess it reminded him of people that change from normal to abnormal quickly. Ha ha. He suggested I contact the doctor if I still have trouble coping. Some abdominal TMI issues as well but I'm coping.

 

Mostly right now (after having boundless energy before) I just want to sleep. :)


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GFinDC Veteran

You could ask your doctor to suggest something to soothe your GI system.  Over here in the states I'd say try some Pepto Bismol but I don't know if they have Pepto or something like it in your neck of the woods.

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      Thanks for the reply. 
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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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