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Diagnosis biopsy ,update


manaja

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manaja Apprentice

Hi everybody, well , I received a text from the doctor late yesterday evening to go down this morning at 08.30 , so I did, he then gave me a report saying my diagnosis is as follows . "Patchy inflammation of the duodenal mucosa, increased intraepithelial lymphocytes , crypt hyperplasia with villous atrophy,"  so it seems he says , "You DO have Celiac disease !"  I also need a follow up at the GI clinic in 8 weeks time, he said a note at the bottom says  that " the patient should now follow a strict gluten free diet" . I thought my biopsy was negative , seems they hadn't received the note from the consultant.  Well , at least now I know.


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cyclinglady Grand Master

Well, it can only get better now!  I am sorry that you have celiac disease, but it is nice that we can essentially heal ourselves with a good gluten-free diet.   Stick with whole foods and avoid processed until you feel better!

Hugs!  ?

Fundog Enthusiast

Yes, now you know!  (Hooray for having answers?)  The good news is, you can actually do something about it. :)

FG006 Rookie

What a story! But now you know it, you can start with a glutenfree diet to heal yourself, hope you will recover soon!

manaja Apprentice

Thank you for the replies , Its a big help to know there are lots of people in the same boat, willing to offer advice, my own brother is a Celiac and has spoken to me, its all very daunting what to eat and what not too eat and beer ... I like it a lot , but my brother drinks Corona and says its fine as are some Japanese lagers , many thanks again.

squirmingitch Veteran

I sure am glad that got settled! All first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present.

This should help you a LOT. Read this thread & follow the links contained within:

As to the Corona, I wouldn't be caught dead drinking it but it's your gut & your health. You might wish to read this:

Open Original Shared Link

manaja Apprentice

Thank you again , I forwarded the link onto my brother who is a fan of "Corona " and he was astounded by the review, 200ppm , and its classed as safe ?!  Well I don't think he'l be drinking it anymore ,like he says , he's spent the last  year on a totally gluten free diet even buying his own pans and utensils thinking a couple of Corona's is fine , not knowing it was all for nothing !  both very good articles, I've a long way to go but many  thanks again .


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squirmingitch Veteran

You're welcome but in all fairness I must point out that it tests under 20ppm. The way the type is written is mistakable for extra zeros. I even had to do a double take, triple take on it. However, for every one you drink you're adding gluten.

For what it's worth, I wouldn't be caught dead drinking anything but a true gluten free beer. Well, if I did then I am sure I would eventually be found dead. To me it's just not worth it. You may not feel a reaction but that does not mean damage is not being done. Eventually it will catch up to you. There are some really good gluten-free beers out there and admittedly there are some that taste like crap. You just have to try them until you find one or 2 that YOU like and you can find that. There are more being made all the time. Or you can become a wine lover.

Personally I don't care for beer -- gluten free or otherwise. I'm quite sure that's because pre dx, beer always made me sick as a dog. I learned that even as a teen experimenting as teens do, with alcohol. Now I know why beer always tore my gut up something awful. My aversion to it still lingers. I'll take vodka. Yum. With apricot nectar, cranberry juice, Rose's Lime, black russian, white russian, bloody mary, orange juice, pineapple juice and a hundred other ways. 

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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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