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Did This Happen To Anybody Else?
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6 posts in this topic

I'm a possible Celiac victim (no blood work before gluten-free). When I first removed Gluten, I felt AMAZING for a few days, but then regressed into my former symptoms. In the two months since, I've felt what I perceive to be a steady recovery, but without any jumps like that which occurred right off the bat. 

 

Is this immediate recovery followed by only gradual improvements a common experience?

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Could it be you are getting gluten from cross-contamination?  Did you clean your kitchen well?  Do you have people in your house that are still on the gluten, making it in your home? It's every where, can be in toothpaste, hair product, makeup, lip balms, pet foods, the most innocuous places.  Your significant other could also be getting you if they eat gluten and don't brush their teeth.

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Yes. Everyone is different. Some take months to years to heal. Good luck!

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Yes and no for me. I had a whole list of 40-50 symptoms that went away completely when I went gluten free, some taking days to ease up, others slower and taking weeks to disappear completely.

But it took me a couple months of having some of my pains and some other odd symptoms not ease up, and at times to be worse, for me to figure out that I must also have vitamin deficiencies. Got tested, and sure enough, I had some major ones. Treating them did knock my other major symptoms out.

And I found that I had some new food intolerances that I hadn't had before going gluten-free, so a few more foods were removed from my diet.

 

But I still have odd issues arise from time to time. Some of it I know is related to the damage that gluten did to various organs that is never going to heal. Some of it I still don't understand and continue to do research all of the time, hoping to avoid major problems in the future.

I think one of the things that I have learned through this process is how much I still don't know simply because I haven't stumbled upon the information yet, and how much the medical community still doesn't know because so little research has been done in this area.

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Hi Sidelined.

 

I'm assuming you've seen your Doctor for a look at your symptoms, you may also want to consider a gluten challenge to do blood testing and endoscope.  You could have any number of issues going on and not necessarily Celiac.  You don't want to leave a medical issue untreated and you also would not want to undertake a medically necessary diet if not diagnosed with Celiac.

 

Good luck with what you decide.

 

Colleen

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I had the same thing happen. I felt good for a week and now, for the past month, I have felt terrible. I haven't been able to socialize, work or do anything because I'm super exhausted, nauseous and weak. The doctor keeps telling me to be patient. It seems like I get a tiny bit better every week but not a lot. How long before I will feel back to normal??

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    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
    • I see no mention of the use of tTg tests to indicate the presence of Chrohns http://www.ccfa.org/resources/diagnosing-crohns-uc.html     
    • I guess I feel like if it is celiac that's ok. I know so many people with celiac and I feel ok about it. But anything else terrifies me. I just read online that elevated blood tests can be from crohns and not necessarily  celiac. But I don't know how elevated they mean. I also don't know how common that is. I don't have symptoms of crohns aside from the intestinal issues. No pain, no elevated white count, no bleeding or anemia, my weight is stable. I just didn't know if the ttg-iga can detect crohns rather than just celiac.  I do think that my weird hives that I get upon scratching or brushing up against something could be related to celiac, if that's what I have. My PUPPP rash was miserable. I never related it to gluten and I don't know if other women with celiac have experienced that. My anxiety started right around the same time that my dermatographism started. I have keratosis on the backs of my arms and on my thighs. They come and go. After my last pregnancy the backs of my arms felt like sandpaper. I can't help but wondering if it's all connected. 
    • So there is this drug being developed.  I believe there may be another, too?  If I have time, I will look and post.     http://www.alvinepharma.com/alv003/
    • I am sorry that you are so stressed!  But think about it.  Even if you should receive a Crohn's diagnosis, you just going to deal with it.  Chances are, with a celiac family history like yours, it is more likely to be celiac disease.  Try not to worry.  Think of the positive, you could be catching a relatively early diagnosis.  Perhaps, you can help your sibilings and children too.  Not all celiacs have symptoms.      
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