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Indigestion


LynnR

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LynnR Explorer

Part of my celiac disease symtoms is chronic indigestion. I have been taking digestive enzymes but they don't seem to be working at all. Everytime I eat (no matter what I eat) I can feel it just sitting there. Or sometimes it just runs right out of me.

I feel if I could just get rid of the indigestion many of my other sysmptoms would probably get better. Could this mean that my intestines are going to take a long time to heal maybe because they are so damaged?

I haven't been on the gluten free diet too long. I now know that I probably had celiac disease and/or the symptoms of it several years or about all my life.


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lovegrov Collaborator

You've been gluten-free for just three weeks, which isn't enough time to heal hardly at all. Some people notice an immediate difference while others take months and months. In my case, I was able to eat again right away (and I never really had the diarrhea problem) but it was 10 weeks before I could return to work and several months before I could resume a normal life. If I had a more physical job it would have been a lot longer before I could have worked.

When you say digestive enzymes, is that the same as probiotics? If not, you might also consider probiotics.

Relax. I know it's hard to feel so bad (weeks and weeks after I went gluten-free I sat on my bed one day crying because I was SOOOO tired of being sick; scared my 14-year-old daughter to death), but the vast majority of people, even those who probably had it for a long time, heal completely.

richard

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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. 
    • JoJo0611
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