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Newly Diagnosed Celiac, And Just Glutened


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Hi. I was recently diagnosed with Celiac about 3-4 months ago. Actually, I was sort of diagnosed. I was going to doctors for months for issues with low energy, depression, and just feeling overall unbalanced. Finally they did a blood test and said that it looks as if I have celiac. Next was the upper endoscopy. The doctor said that I do have signs that I am in the beginning stages of celiac. I'm not exactly sure how someone "may" have celiac, but thats all I have for answers right now. I'm supposed to go back in another month or so for another blood test after eating gluten-free for a good chunk of time.

 

Anyways, I have been eating gluten free, and definitely feel better and more balanced. My energy levels are much better. The diet is easy for me to maintain on my own, but is still somewhat of a challenge when I go out with friends or family. That brings me to my next issue...

 

Tonight I went out for sushi. I ate a piece of one roll and realized after I ate it that there was tempura in it. My stomach is definitely acting up right now. I guess my question is, after you have been eating gluten free for awhile, does eating gluten just once bring you back to square one? I guess I just want to know if the progress I've made lately has been undone. That might be a silly question. 


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notme Experienced

no, you are just going to hafta suffer through symptoms - your intestines have been healing (hopefully) and one glutening isn't going to undo that -  just get back on the horse :)

 

i haven't tried to have sushi 'out' because of the soy sauce (lots of them are made with wheat)  i use bragg's enzyme as a sub at home.

 

hope you feel better :) 

GF Lover Rising Star

Almost two years gluten free but I am still afraid to eat out :ph34r:

 

That said, when I do attempt a meal away from home, the first thing I do is pull the waiter/waitress to the side and privately explain my situation.  I have them check with the Chef on everything from sauces to seasonings and to make sure they take notice of cc issues (leave my baked potato un-cut).  My meals are usually much simpler than other diners but they are safe.  If I happen to come across resistance then I will not order a meal.  I would much rather miss a meal than pay a hefty price.  Note: there was a learning curve. :lol:

 

Colleen

love2travel Mentor

Tempura batter is almost always made with rice flour but you definitely may have been glutened from a sauce or something. We all make mistakes, even those of us who have been gluten free for ages! Try not to worry about it. Easier said than done, I know, but worrying will not help. It will get better. Honest!

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      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.  
    • Samanthaeileen1
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