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Gluten Free 5 Weeks Some Symptoms Getting Worse
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33 posts in this topic

Yes, sadly some of us do get worse before we improve.  If you have not, remove dairy -- it is the most common intolerance for those with Celiac Disease.

 

Hang in there!

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Hi again ,

when I couldn't get up from the sofa , I drank the broth from the chicken , please ask someone to boil up a chicken for you so you can at least drink the broth ,

also your dietician can they prescribe food drinks for you whilst you cannot eat , I had some prescribed and they did help ,

plenty of water and the chicken broth will help until your doctors find out what the problem is for you

x x jiggles

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Wow!  We have a lot in common!  I recently posted a thread similar to yours asking for help.  I'm now six months out from diagnosis and I feel worse all the time!  And, like you, I continue to lose weight.  I haven't seen any blood, and I'm not in the bathroom quite as many times as you are, but other than that we are quite similar.  It seems like every week I discover something else that I can't seem to tolerate.  I've had two endoscopes a year apart.  The first showed "slight inflammation - non specific, and I was told that I didn't have celiac.  The more recent one "moderate inflammation", and this time I was told I tested positive. I can't find a protein drink either, so the dietician told me to try pea protein powder. I haven't tried it yet.  I've been drinking MuscleEgg for awhile.  You can order it online.  It's simply pasteurized egg whites that comes frozen.  I seem to tolerate it well.  I have an appointment with a new gi in a few weeks.  I'm hoping he can help figure out if there's an additional problem.  I hope you see some improvement soon.  Keep writing!  I'm so anxious (for both of us) to hear what you find out.

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My nutrient levels fell somewhat after I went gluten free.  They have since gone up again.  Keep on it you should get somewhere!

 

D

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Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...

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I'll be thinking of you....

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This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.

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Very glad you found another piece of your puzzle and hope you continue to improve.

Thanks for the update.

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