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Am I Getting Enough Gluten For A Biopsy?

peppyking

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peppyking Apprentice
peppyking
Posted

DD was diagnosed mid November and I took the house gluten free. I liberally ate gluten when out, but that was maybe a few times a week.

The end of Dec, I had my blood screen, and the doc called with the results around Jan 20 (by this time I've been gluten light for about 9 weeks) and said my blood screen was positive. Ttg was 30 (>4 range) and EMA was 1:20 (1:5 range). Not crazy high, but both were positive.

GI said he was willing to diagnose me based on blood screen and my daughter's diagnosis, but he recommended the biopsy. I want one, as I have no symptoms, and do not want a question mark over my diagnosis.

To that end, I wonder if five weeks of daily gluten (one meal or snack, since I have to sneak it in away from home) will be enough. I was never gluten free and the blood was positive after 6 weeks gluten light, so I would think so. I want to get this behind me, but I don't want to mess up the accuracy with impatience. Does anyone know or have a more educated opinion?

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cyclinglady Grand Master
cyclinglady
Posted

Well, my test was barely positive and anemia was my only symptom at the time. My endoscopy was seven weeks out (due to work constraints and not my doctor), so I took that time to eat all my old favorites -- a fond farewell! The problem was that I went overboard. I literally ate a loaf of sourdough a day! Plus, cookies and cakes! My biopsy revealed A Marsh Stage IIIB which is moderate to severe damage. It was at the end of of those seven weeks that I started to get a pinching feeling my my actual stomach.

Looking back, I would eat the equivalent of two slices of bread a da which seems to be the standard. Not a loaf!

I hope this helps!

nvsmom Community Regular
nvsmom
Posted

I was diagnosed with a positive tTG IgA, EMA IgA, and no biopsy so I am biased - I see no question mark in your diagnosis, you have celiac disease.

A biopsy usually requires 1-2 slices of bread per day (or equivalent) in the 2-4 weeks prior to the procedure. If I were you, I would eat gluten daily. Have a muffin or a beer, but have something. The biopsy misses up to 20% of celiacs, so you want to do as much as possible to make sure you are one of the 80%. As it stands now, with two positive tests, if you get a negative i would assume you are one of the minority of celiacs whose intestinal damage was missed, and not that you don't ave celiac disease.

Good luck with the biopsy. :)

sunny2012 Rookie
sunny2012
Posted

I was part of the team that developed the blood testing. I find it so discouraging that so many doctors are using it to support more expensive and invasive testing instead of actually accepting the results. WORSE, the more "gluten Challenges" are accepted, the less doctors will consider this disease a serious threat to ones health and life.

 

I very nearly died from Celiac. The only change was to stop eating gluten once I was finally diagnosed.

 

It seems that you can just stick to the gluten light diet.

Be sure to demand that the doctor take at least 6 biopsies from different areas and cuts them properly. 

Hope you get to feeling better soon.

peppyking Apprentice
peppyking
Posted
  • Author

Thanks, everyone! I am looking forward to getting this part behind me.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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