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Help Me To Understand My Symptoms


jorge0464

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jorge0464 Rookie

Hi all,

Thanks for your time and help. I am desperado and it is the reason because I am posting. I have what I believe is a severe malabsorption because I can see undigested food in my stool, have non-stopping loud bowel sounds after eating, abdominal cramps, dry skin, lines on my nails, random muscle tics around my body and large amount of stool. I was tested for Celiac in blood and had intestinal biopsy that were negative but the visual report in my endoscopy suggested Celiac because they could see damage. I have been totally gluten free at least there are gluten sources that I don't know. The fact is I don't see any turn over yet. I have been more strict with my diet since only one month, before, I ate outside sometimes and I really don't know if CC could happen. Anyway, my question for you is if my symptoms are familiar with you, specially large amount of feces and bowel noises. I know the villi will take time to regrowth. How long does it was for you to feel normal again ??

Thanks for any help.

Jorge.


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knivhoj Newbie

Hello,

I fully understand if you are getting desperate, apparently the digestive tract is a complicated thing, and doctors seems to know very little about it. Your story sounds very much like mine, so let me tell you my experience, and then you can see, if there is something that sounds familiar to your situation.

Four years ago, I was treated with antibiotics (Amoxicillin and Cipro). My diverticulitis went away and the treatment was considered a success by my doctor. To me, it was a disaster. I developed intolerance to gluten and six months later, I was unable to digest all types of starch, and I had several food allergies. Like you, I saw undigested food in the stool, dry skin, loud bowel sounds, gas, bloating, lines on my fingernails and large amount of stool. I had candida infection in my mouth and several other places on the skin, so my doctor suggested a treatment (Diflucan and Nystatin). It helped in the mouth and on the skin, but had no effect in the guts. Syclovir and ThreeLac had no effect either. My stool turned yellow and contained a lot of fat.

After two years of being gluten free, my doctor did the blood tests for celiac and also did a biopsy. Both were of course negative, but an apirate taken from the small intestine showed a bacterial overgrowth. It's all friendly bacteria, but they should not be in the small intestine. The cure is more antibiotics, and trust me, I was really scared of candida, when I started the treatment. I bought lots of probiotics to take during and after treatment. The treatment worked wonders, and the new candida infection on my skin was treatable.

Many doctors are using a simple Hydrogen Breath Test to diagnose a bacterial overgrowth, but beware, celiac or gluten intolerance may give a false positive result in this test.

I just recently did a gluten tolerance test for a blood test for celiac. The result was negative, but the effect of gluten in my body was very strong, so I have an official diagnosis of non celiac gluten intolerance. The interesting thing is, after ingesting gluten for four weeks, I again see the signs of a bacterial overgrowth in my small intestine, and antibiotics have once again become necessary. I hope this will be of some kind of help.

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    • 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.
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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? 
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      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.  
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