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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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