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Lo And Behold


tiredofdoctors

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tiredofdoctors Enthusiast

Ash went back to the doctor today at school. They now have her going to the Chief GI and the Chief Hepatologist.

They did TONS of bloodwork today (she said 10 tubes drawn), but "three of the tests were specific for Celiac Disease" --

They have her scheduled for an endoscopy, and probable colonoscopy.

Their other two (scarier) but less likely diagnoses: a rare form of colon cancer or liver cancer.

The doctor did say, however, that with my disease, the fact that they DIDN'T do an HLA DQ1 test (said they couldn't??????), but that I have gluten intolerance, everything points to Celiac Disease. My daughter is furious. She said that my pasta "is disgusting". It's not like REAL pasta. (She grew up on home-made noodles, spaghetti noodles, etc.) Hoping VERY MUCH that it's Celiac and no more than that.

Thought that it was kind of ironic that she had a really hard time believing that my difficulties were not in my head -- and were due to gluten -- and now, the tables have turned . . . . . . .


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mouse Enthusiast

Ashley still has the TB problem, doesn't she?

If she has celiac disease, I would love to be a mouse in her home. The rantings are going to be worse then they are now. I would be sorry that she has it, but hope that if she does, some good can come out of the diagnosis. Like treating her Mother's illness seriously and with caring.

CarlaB Enthusiast

For so many people a celiac diagnosis would be so scary ... but since it's familiar to us now, you can honestly say, "Thank goodness it's ONLY celiac!" It definately sounds like the best choice of the three ... not that there's a choice involved. Keep us posted.

happygirl Collaborator

Keep us updated, Lynne. I'd definitely be interested to know how this all plays out. xoxo

Canadian Karen Community Regular

Oh my...... The irony of it would be just too much to fathom!

What goes around, comes around..... Above all, God does seem to work in mysterious ways, doesn't he?.....

Luv ya always,

Karen

tiredofdoctors Enthusiast

Isn't that the truth????? She has her endoscopy on Wednesday at 11:00. I'm gonna be there, because I want to hear it STRAIGHT FROM THE SURGEON if those villi are flattened!!!!!

It would make ABSOLUTE sense, though, as to why she is having so much difficulty. She is pale, she is RAIL thin, she swears she's eating, not purging, and her husband backs this up. When she is at my mom's she is always "grazing" . . . of course, on all things gluten-filled!

Should be interesting to see how this plays out. I SERIOIUSLY hope it's "only Celiac". Funny -- two years ago, I would have FREAKED OUT if I found out my daughter had Celiac!

AndreaB Contributor

As Carla said, we've come far when we hope it's just Celiac.

At least that is totally treatable with the diet change.

Please keep us posted.....I know you will. :)


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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
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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