Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why The Symptom Rebound?


texmatt21

Recommended Posts

texmatt21 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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.

ravenwoodglass Mentor

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

Lisarose Newbie

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

kareng Grand Master

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.

gatita Enthusiast

Also maybe test for SIBO? My new GI doc thinks I have it, and this study seems to show a lot of Celiacs who still have symptoms after going gluten-free have it: Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    CeceNV
    Newest Member
    CeceNV
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.