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Why The Symptom Rebound?
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6 posts in this topic

Hi, I was confirmed celiac by blood test back in June of 2012 and the first few weeks gluten-free I felt AMAZING. I had more energy than I ever thought possible, my memory was razor sharp and the brain fog was finally gone. It was like I was awake and alive for the first time in my life and I LOVED it.

The good times didn't last though. A few weeks go by and I'm back to having no energy, depression, anxiety, the works, even though I'm sure I've been gluten free other than 5 or 6 slip ups. I have such a strong reaction to gluten, numbness and tingling in my hands, extreme fatigue so that I can't even move, migraines, bloating, etc that I feel like I would know if I was accidentally eating gluten. I get horrible symptoms from even the smallest amount of CC so I don't think it could be that.

My question is, why have my symptoms returned and not improved in the last six months even though I had such great results to start? I take probiotics every day, workout 3 times a week, and eat mostly whole foods with only the occasional bag of doritos. I know I'm lactose intolerant and avoid dairy, but I do drink Silk or lactaid. I haven't had my vitamins levels checked yet, but I think maybe I should.

Any suggestions you have will be greatly appreciated. Hope is in short supply at the moment.

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Yes, I do think you should get your nutrient levels checked, vitamins, electrolytes, iron/ferritin, and also get your thyroid function checked, TSH, free T3 and free T4. Any deficiencies can really drag you down.

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You might try switching to a non-soy milk and dropping the Doritos for a bit a see if it helps.

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Hello,

My first thought was the Doritos... they contain monosodium glutamate which is made of gluten... possible when you first went gluten free, like others you cut out most things then started again... its tough to investigate all ingredients some times and for some people an exposure to gluten can cause huge effects even if its only a few times, kind of like starting over every time... keep your chin up, it gets easier...

Take care and keep in touch....

Lisarose

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Hello,

My first thought was the Doritos... they contain monosodium glutamate which is made of gluten... possible when you first went gluten free, like others you cut out most things then started again... its tough to investigate all ingredients some times and for some people an exposure to gluten can cause huge effects even if its only a few times, kind of like starting over every time... keep your chin up, it gets easier...

Take care and keep in touch....

Lisarose

MSG is not made of gluten in the US. Many people, with Celiac and without Celiac, have problems with MSG.

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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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