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Biopsy Results Tomorrow

mmm1017

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mmm1017 Rookie
mmm1017
Posted

I had my bloodwork and my biopsy last Friday. I know that some GI doctors do the bloodwork first, but mine was pretty certain from my medical history that I was either celiac or gluten intolerant. While she was doing the EGD, she took pictures of the duodenal bulb (with a cracked-earth appearance) and the the duodenum (scalloping). She said it looked like celiac to her but we would wait for the biopsy results. She was also concerned about food residue in the gastric body, fundus, and antrum; so, she did a biopsy there too. I'm supposed to call tomorrow for the results. If the genetic test also comes back positive, my children have to have that done as well. Our allergy doctor is concerned that my 8 year old is already showing signs of celiac and my baby is not gaining weight the way she should. Hopefully, no matter what, my kids can avoid all of this. What are the chances that the appearance of the duodenum is from something else?

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mushroom Proficient
mushroom
Posted

Possible, probably not probable, is my best guess.

mmm1017 Rookie
mmm1017
Posted
  • Author

Possible, probably not probable, is my best guess.

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

mmm1017 Rookie
mmm1017
Posted
  • Author

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

And they were all positive for celiac. What now?

mushroom Proficient
mushroom
Posted

And they were all positive for celiac. What now?

Welcome to the club - you will have to learn the secret handshake :rolleyes:

The next step is to have your kids tested for celiac too, I would think, since it is so genetically based. Also the genetic testing because they may not test positive for celiac right now so that would show the potential.

You must stop eating gluten now, of course, but the results of the children's testing and a family meeting will be necessary to decide how gluten free your house is going to be, whether your husband would be onboard with not eating gluten at home, etc.,etc.

Fire away with any specific questions you have.

Twinklestars Contributor
Twinklestars
Posted

I'm glad you have answers for your ongoing medical problems. Gluten free straight away for you, but your kids will need to stay on gluten until they're finished with their testing. I think it's important to get them tested, so you know for sure whether they're celiac. I would imagine a positive diagnosis would make it easier to explain to their school, etc. Good luck :)

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      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
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      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
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    • Aretaeus Cappadocia
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      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
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