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Need Advice

Littllemel

By Littllemel
in Doctors

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Littllemel Apprentice
Littllemel
Posted

I am definitely gluten/dairy intolerant and have leaky gut but have tested negative for Celiac in an endo-biopsy. I have a Dr's appointment on Monday and I want to ask for the blood tests to test for Celiac since I hear there is a high false negative rate with the biobsies. What are the blood tests called?

I also have purchased the supplements iFlora which is a multi probiotic, L Glutamine 500mg and Rainbow Light Advanced Enzymes.

How much LGlutamine 500mg should I take? The bottle says 3x day but should I be taking 1000mg 3x a day instead?

Should I take the Enzymes everytime I eat? That could be 5 or 6x a day. Or should I just take them 3x a day with my bigger meals?

How many times a day should I take the iFlora? Below is a list of ingredients

560 mg Proprietary Synbiotic Blend** of Short Chain Fructooligosaccharide,

(NutraFlora

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pricklypear1971 Community Regular
pricklypear1971
Posted

Measure out the broth you'll eat for a few days, and put the rest in 8 oz. containers in the freezer for another day.

Go to the University of Chicago Celiac Center and look for their 1 pagers. They have a great one on testing.

Take the Digestive Enzymes with your big meals or as directed on the bottle. Follow the directions on the bottle for the probiotics. I take 1 per day but they are all different.

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    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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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