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I finally got a copy of my pathology report, and also my endoscopy procedural report. Here are the key parts:

 

Pathology report

1. Duodenum, biopsy (4 samples taken): No pathological abnormality. Villus architecture preserved.

2. Gastric biopsy (1 sample taken): Antral type gastric mucosa with no pathological abnormality.

3. Esophagus biopsy (several samples taken): Squamocolumnar junction with reflux esophagitis.

No H. pylori

Post-operative diagnosis: Gastritis and patulous GE junction

 

Endoscopy procedure report

Mild attenuation in the villus structure, but overall the duodenum appeared structurally normal. There is patchy erythema of the gastric body and striped erythema of the antrum. Retroflexion revealed patulous GE junction and a small hiatal hernia. The distal esophagus and mid esophagus all appeared normal. 

 

My tTG-IgA and DGP-IgA and IgG results were again negative. This was after being gluten-light for about 15 years, then 12 days totally gluten-free, then a six week gluten challenge in which I ate an average of about two slices of bread per day and all sorts of awful things happened like my hair started falling out, diarrhea worsened dramatically, ataxia and insomnia worsened, etc. I'm not IgA deficient (204 with a range of 81-463). I do wish they'd taken more samples from the duodenum, but there's nothing I can do about that now. Before the procedure I requested that she take at least six, but apparently she didn't.

 

The nurse did move up my appointment with the GI, which had originally been scheduled for September. I see her in ten days. Before the procedure she already recommended going gluten-free regardless of the results, due to a long history of symptoms, a rash all over my torso, and celiac in a first-degree relative. My intestinal symptoms are hugely improved in just the last two weeks gluten-free, and my hair has almost stopped falling out. Sorry if TMI, but my poop was even solid and sank for the first time in months! The rash and neurological symptoms haven't changed too much, but I know those can take longer. I'm obviously not going to return to eating gluten, but I do still wonder whether I'll get an official diagnosis of any sort. I'll happily remain gluten-free (and our kitchen is gluten-free due to my daughter's celiac anyway), but I don't know how long to wait to see whether the neurological and skin symptoms go away before I start investigating other possible causes.

 

Thoughts, anyone? I'm especially wondering what it means that "mild attenuation in the villus structure" of my duodenum was observed during the endoscopy, but those biopsies were normal.

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The neurological and skin can take a while to clear. You might want to limit iodine for a short time to help your skin clear faster. Do be sure to add it back in after your lesions have resolved. Sublingual B12 seemed to help my neuro issues improve but it still took some time. IMHO you should give yourself at least a couple months gluten free before worrying that something else might be going on. If those issues get worse or you get more neuro issues then you would need to talk to your doctor.

It is good to hear you are already feeling better. You may find the GI gives you an official diagnosis based on your recovery gluten free combined with your reaction to the challenge.

I hope you continue to improve quickly but you may need to be patient with some issues.

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