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Cat84

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Cat84 Newbie

Hi,

So I have always problems with bloating etc and had bouts of constipation and then everything going straight through me. Over the past 2 years or so when I had blood tests and was always low in iron or folic acid but didn’t really think anything of it and just took tablets to bring my levels back up. Then a couple of months ago I was almost ‘caught short’ going to work and went to doctor as I  didn’t want a situation where I couldn’t get to the toilet on time and the urgency I would have was getting worse. The doctor did further blood (low in folic acid again) but my celiac test came back negative but he still referred me to the hospital. Was surprised as thought it would be a case of IBS (it could still be) and thought he would send me away to keep a food diary.

 

So went to the GI consultant and spoke about my symptoms (including sore red patches on my tongue) and although my bloods came back no to celiac he booked me in for and gastro endoscope and biopsy.  Again surprised as know friends that have had to fight for this but happy that it would come back clear and I could go on with my life knowing that I just have to be careful about not eating masses about of wheat etc. When they took the biopsy (4 in total) they said my bowel looked really flat and not real folds at all. After when we spoke about what she said though the procedure (including a very sensitive gag reflex!) she said that it was really flat in bowel. She said not to worry as she has seen it like mine that have come back fine and ones that look fine come back as a positive result.

 

Now I am worried, at no point did I think that I would have celiac until now.  All I see it as is a massive change in lifestyle that I do not want to make. Part of me thinks that I am over reacting and that what will be will be but another part of me wants to be as ready as possible in case it comes back as a positive result. Guidance and help would be gratefully received.

 

 


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kareng Grand Master

Sounds like you were diagnosed with celiac disease by endoscopy? Or about to be? Here is a good place to start

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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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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