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Sound Like Celiac Disease?


Jaey

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Jaey Newbie

So last year I went out with a friend and walked around all day shopping at some giant strip mall.  Came home and at night I had a tingle in my right calf.  I stretched it a bit and the next day my ankle was stiff and hurt.  I chalked it up to a sprain of some sort and it was hurting for about 2 months.  The pain would reach up my entire leg.  Then it started to go away and then it spread to my other ankle.  Now I started worrying that it couldn't be an ankle sprain it must be arthritis or something.  So both my ankles ached a bit.  Then my feet and hands would tingle with pin pricks.  Also my muscles would start twitching all over my body.  Little spasms.  That lasted about a week.  Then finally I started getting this pain in my lower rib area over my gallbladder or liver.  It was becoming so intense like this burning ache.  My back around the kidney areas was starting to ache as well.  I did some research and first thought diabetes but stopping all sugar didnt help.  So I tried gluten free and the tingling, twitching, ankle pain, and intestine pain all lessened.  Well the twitching and tingling stopped completely and the ankle pain is only very slight.  But my intestine pain is still there and sometimes it flares up for reasons that I do not know.  I could swear I don't touch gluten but still sometimes the intestine pain worsens and it makes me wonder if it really is gluten after all.  I eat out alot so I don't know if it's cross contamination that's getting me or what.  Does this sound like Celiac to you or something else?  I should have health insurance through obama care very soon so I've been waiting on that to come through for me before I go for a diagnoses.  Should I be stopping all dairy as well just to be safe?

 

 


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indianaharlegirl Newbie

Hello: you need basic blood work panels to check your liver and kidney functions and white and red blood counts and they need to do an A1C and other tests for diabetes and many other things. I have researched Celiac and it really is different for everybody and they usually don't test for it unless you ask or they have ruled out everything else.....unfortunately. Good luck. Hope you find your answer but those symptoms could be many different things....

nom Newbie

It is easy to get Gluten contamination in restaurants.  Even those who have Gluten Free menus and do everything they can to avoid it, there's still a chance because accidents happen.

 

If you want to give Gluten Free a serious go, you need to stop eating out for at least a couple of weeks, but before you do so you have to scrub your kitchen completely.  I tried it half-heartedly at first a while back, and didn't get as dramatic a change as I did recently.  I went through a fierce withdrawal, which tells me I didn't do it properly the first time.

 

Just my $0.02 anyway.

ravenwoodglass Mentor

It could be celiac or a it could be something else. You need to start eating gluten again if you are going to be tested for celiac. If you are not eating gluten your body won't have the antibodies that the doctors will be looking for to diagnose you. Hope this gets figured out for you soon. 

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    • par18
      Thanks for the reply. 
    • Scott Adams
      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.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
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