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Help with the biopsy result


Nelly

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Nelly Rookie

Here is my daughters biopsy report . She's 18 years old and is asymptomatic. Her ttg igG was above 300 but her ttg igG was 5. Can you please help me with her biopsy results as she's is reluctant to go on gluten free diet. Also suggest me if I should go for her genetic testing  which I wanted to avoid but will only do so to convince my daughter that she's celiac and has to follow gluten free diet.

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cyclinglady Grand Master

Welcome!  I think you made a typo.  You listed the TTG IgG twice with two different values.  Can you please clarify?  

The genetic test helps rule out celiac disease -- not diagnose it.   That's because some 30% of the population carries the genes, but only a few actually go on to develop celiac disease.  You might consider asking for the EMA and DGP blood tests, but honestly, it looks like you need to get your daughter to talk to a doctor.  He/she should be able to convince your daughter that she needs to go gluten free.  Perhaps, investigate the negative outcomes of untreated celiac disease.  

My heart goes out to you and your daughter.  I suggest the family goes gluten free with her at least for a while.  Just choose naturally gluten free foods (meat, fish, rice, potatoes, fruit and other veggies.  Snack on nuts, corn or potato chips.  Things the whole family can eat -- ice cream.   Others can grab gluten foods away from home.  Read our Newbie 101 thread located at the top of the "Coping" section of this forum.  

All first degree relatives need to get tested.  If she is not symptomatic, what prompted her testing?  

Nelly Rookie

Sorry for the error. Her ttg iga was above 300 and her ttg igG was 5. I myself was diagnosed celiac in 2015. I got my daughter tested for celiac because since she was 5 she used to have severe stomach pains when ever she ate fried things or when she used to miss her meals. In both cases she used to suffer from severe pains which lasted for 5-6 hrs with sometimes vomiting and diarrhoea. But she outgrew from the issue a year back when she was diagnosed in early 2016. So this was the reason I get her tested for celiac. Kindly can you tell what her biopsy results say. Is it celiac and which marsh level

cyclinglady Grand Master

I am not a doctor, but this may help:

Open Original Shared Link

From a parent's perspective, it's celiac disease.  That TTG is super high.  The good news is that she can undo the damage (e.g. Like building up her bone mass).  

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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