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Symptoms Of Recovery


Noche22

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Noche22 Rookie

Some symptoms I am experiencing the past week (found out a week ago today that I am celiac):

- severe diarrhea one second, constipation the next

- internal bruising in stomach (like my tummy is bruised inside, weird)

- burning eyes (like tired feeling)

- bursts of energy that come and go

- feeling VERY dehydrated

- shaky

- day 6 of headache (two of those days were migraines)

- pain in stomach

- flu-like symptoms

- itchy skin

- restless sleeping (tossing and turning/diagnosed with Restless Leg Syndrome today, starting new meds)

- insomnia got worse

- skin on stomach sensitive to touch

Is anyone else going through this or gone through this? I feel crazy for feeling all this, but I know I am. Any insight would be great :)


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ravenwoodglass Mentor

It can take some time to heal and ups and downs are not uncommon. Do make sure to check and make sure all meds you are taking are gluten free and take precautions against cross contamination. Go with whole unprocessed foods at first and it is helpful to also drop dairy. I hope your feeling better soon.

SGWhiskers Collaborator

I had 7 of those when I went gluten free. Things that helped:

1) Getting very strict about cross contamination

2) Drinking water or decaf tea instead of juice/soda. Sugary drinks and even too much fruit made the dehydration worse. I think it was a blood sugar imbalance I was triggering.

3) Rest (even if it wasn't sleep)

4) Time

5) Replacing my giant multivitamins with lots of protien shakes. (I could also have found chewable gluten-free vitamins if I had known where to look [bellibar prenatals])

6) Stopping the NSAIDS and/or Asprin products

Congrats on the diagnosis and the beginning of recovery.

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    • 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.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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