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Does This Have Any Chance Of Being Celiacs Or Intolerance?


runningcrazy

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runningcrazy Contributor

Hi, im new here!

I've been having many problems with my stomach. Constipation,stomach ache after each time i eat, bloating , and I lost some weight.

I am a 13 year old girl, 5'4 and right now I weigh about 94lbs.

In around February I weighed 81lbs, which means I lost about 12 lbs in the last 6 months. I was also experiencing pretty bad constipation despite my daily running and vegetarian/high fiber diet and loads of water. Me and my mom figured we would give a gluten free diet a try.

I went gluten free for 20 days. In that time I gained about 8lbs. I was feeling better at first, but my stomach aches were still there. I ended up going to a pediatrician to get a blood test to ensure it was celiacs. She said that even thoigh I hadnt eaten gluten, the blood test would still be accurate. It came back negative. I was given a prescription for Miralax and at my follow up appointment I was told to eat gluten again and was prescribed dulcolax along with miralax.

I've been eating gluten since half way through april and I have gained about 6 lbs still, so that might mean its not gluten problem? And since i had been eating it two months i got another blood test which came back negative again.

My first blood test from April is a bit confusing to us. I had a CBC in April and just a celiac test in June. Here are my celiac results in comparison from not eating to eating it:

April(no gluten): Tissue Transglutaminade AB IGA: 0.8 (ref range: 0.0-3.9)

IgA: 236 (ref range 80-450)

Other things to note were low iron, high lymphocytes(about 5 above the highest for "normal") Low White blood count, and low glucose.

June result: Tissue Transglutaminase Ab IGA: 0.9 (ref range-0.0-3.9)

IgA: 189 (ref range- 80-450)

So from no gluten to eating it my Transglutaminase went up SLIGHTLY and my IgA went down a bit. They still all were in the range of normal.

Still have stomach aches, still am severely constipated(according to multiple xrays) still am bloated all the time, and as prescribed by my pediatrician I take 2 doses of miralax, 2 colace, and 2 dulcolax daily. For about 2 months now. Miralax longer.

I will see a gastroenteroligist sometime hopefully this month but i just want some input from celiacs or intolerants. Does this sound like a celiac/intolerant case?

Im very confused. My pediatrician said i may get an endoscopy and if all is normal possibly IBS, but ive heard over half the time IBS is really celiacs!

Any iput would be great, sorry for such a long story!! :(


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Hi, im new here!

I've been having many problems with my stomach. Constipation,stomach ache after each time i eat, bloating , and I lost some weight.

I am a 13 year old girl, 5'4 and right now I weigh about 94lbs.

In around February I weighed 81lbs, which means I lost about 12 lbs in the last 6 months. I was also experiencing pretty bad constipation despite my daily running and vegetarian/high fiber diet and loads of water. Me and my mom figured we would give a gluten free diet a try.

I went gluten free for 20 days. In that time I gained about 8lbs. I was feeling better at first, but my stomach aches were still there. I ended up going to a pediatrician to get a blood test to ensure it was celiacs. She said that even thoigh I hadnt eaten gluten, the blood test would still be accurate. It came back negative. I was given a prescription for Miralax and at my follow up appointment I was told to eat gluten again and was prescribed dulcolax along with miralax.

I've been eating gluten since half way through april and I have gained about 6 lbs still, so that might mean its not gluten problem? And since i had been eating it two months i got another blood test which came back negative again.

My first blood test from April is a bit confusing to us. I had a CBC in April and just a celiac test in June. Here are my celiac results in comparison from not eating to eating it:

April(no gluten): Tissue Transglutaminade AB IGA: 0.8 (ref range: 0.0-3.9)

IgA: 236 (ref range 80-450)

Other things to note were low iron, high lymphocytes(about 5 above the highest for "normal") Low White blood count, and low glucose.

June result: Tissue Transglutaminase Ab IGA: 0.9 (ref range-0.0-3.9)

IgA: 189 (ref range- 80-450)

So from no gluten to eating it my Transglutaminase went up SLIGHTLY and my IgA went down a bit. They still all were in the range of normal.

Still have stomach aches, still am severely constipated(according to multiple xrays) still am bloated all the time, and as prescribed by my pediatrician I take 2 doses of miralax, 2 colace, and 2 dulcolax daily. For about 2 months now. Miralax longer.

I will see a gastroenteroligist sometime hopefully this month but i just want some input from celiacs or intolerants. Does this sound like a celiac/intolerant case?

Im very confused. My pediatrician said i may get an endoscopy and if all is normal possibly IBS, but ive heard over half the time IBS is really celiacs!

Any iput would be great, sorry for such a long story!! :(

Hi Mac,

I'm pretty new here also and do not yet (or likely ever will have) a confirmed diagnosis of celiac disease. I was on a gluten -free diet prior to having the small biopsy and blood tests. They were both negative. I cannot eat anything with gluten as it seems to make my ever present digestive problems / bowel pain & pressure even worse. From the symptoms you describe it certainly sounds to me like you may have an allergy to wheat, etc. or possibly gluten intolerance. And I agree with you that IBS is often celiacs. Have you considered other food intolerances as part of you problem. For example, I am very sensitive to saliclaytes. A saliclyate sensitivity can cause many of the problems you describe. If you google this you will find a lot of good information. Are you keeping a food diary? This might help you track down if dairy or some other food(s) is causing your problem.

Sure hope you get some good replies. Maybe someone here will be able to help.

Joyce

runningcrazy Contributor

I have been keeping a food diary becasue we thought I was gettin headaches from peanuts. Since I've been recording what I eat and how I feel I haven't had a nut headache at all..

runningcrazy Contributor

Any other help?? thanks

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    • xxnonamexx
      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
      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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