Wanted advice of if I should have an EGD/biopsy to check for celiac...

[Milo Milo]

Hi all, I wanted to ask for some advice.

I had a "positive" celiac panel back in March.

Here's the relevant numbers/reference ranges from that test:

GLIADIN(DEAMIDATED) AB, IGG
221.4
High
<15.0 Antibody not detected
> or = 15.0 Antibody detected

IgA
<5
Low

Normal range: 47 - 310 mg/dLu/mL

 

The remaining 3 values on the panel were all normal (tTG Ab,IgG), (tTG Ab,IgA), (Gliadin Ab IgA)
 

The background here is kind of complex and hard to explain concisely.

In November, I developed a weird cough driven from my throat. Then asthma in December. This worried me that I had barretts esophagus (for other reasons, too) so I did have an endoscopy at the very beginning of January. This did find long segment barretts esophagus as feared.

The GI told me to switch to a low-fat diet and take a PPI every day. Immediately my digestion broke and has been broken since.

Mid January I went low-fodmap to deal with the sudden digestive issues that hit me out of nowhere. This helped a lot. Part of that meant avoiding gluten. I was definitely intolerant to other foods suddenly besides just gluten (cauliflower, lactose, others) so I had no reason to suspect something like celiac.

In March I tried reintroducing gluten after 2.5 months of gluten free and because my weight loss had finally stopped and I was eager to increase the variety in my diet. The first day I felt great except mild gas and the second day also great until the end of the day when my digestion went haywire. The next day I mentioned the negative experience I'd just had attempting to reintroduce gluten. As a shot-in-the-dark she ordered the celiac panel that I just mentioned the results of.

I was losing about 10 pounds a month during these first 3 months. I discontinued gluten after that 2nd day of trying it mid march. Early april my weight finally stopped falling and stabilized for an entire month and a half into mid-may.

At that time I did a SIBO test. For whatever reason, after taking the SIBO test, (which was weird but technically negative) I got progressively worse over the course of a week and started losing weight again for about 3 weeks but has stabilized again.

My primary GI thinks I do not have celiac disease. This is for a couple reasons 1) he performed the endoscopy at the beginning of the year and said the duodenum looked visually normal so he didn't bother biopsying it. 2) he ordered the HLA haplogroup test. I'm in a haplogroup that is 1 in 210, so about half the general population. He believes these combined rule out celiac.

My liver specialist (who is also a GI) and my hematologist are both concerned that I might have celiac disease. My hematologist because my white blood cells are below normal and she suspects an autoimmune disease beyond the several she tested me for. My liver specialilst based on the "positive" celiac panel and the symptoms.

My personal suspicion at this point is either candida overgrowth or mold toxicity.

My liver specialist scheduled me an endoscopy out of the blue which is surprising to me. I went ahead and scheduled it but feels weird.

My question is: should I actually do this endoscopy or is that pretty invasive for something that is probably not celiac?

My symptoms this year, which have evolved over time, have been:

weight loss

inexplicable anxiety

inexplicable depression (no longer though)

irritability

constipation

diarrhea

steatorrhea (no longer though)

hypocalcemia

gerd and/or gastritis and/or peptic ulcers

lots of inexplicable belching after eating

hair loss

peripheral neuropathies in my feet

feet being hot and red

leukopenia (this one actually predates these symptoms)

lots of sudden food intolerances

painless sores in soft palate

on-and-off fatigue often after eating

light headedness (no longer though)

 

Note: after the celiac panel, I was strictly gluten free meaning if it wasn't labeled gluten free I didn't eat it. After my GI said it wasn't celiac, I now sometimes eat foods for example at a hot bar if it doesn't have ingredients with gluten. So for example I had oatmeal that wasn't gluten free before the little 3 week bout of weight loss I just recovered from. But I'm suspecting that wouldn't have enough gluten to trigger weight loss even if I were celiac but maybe that's a bad assumption. Long story short, if I am still encountering gluten, it's only unintentional trace amounts now from unknown cross-contamination.

Thanks for any advice and pardon if this is too much info or an inappropriate place to ask for advice like this.

Thanks!

[trents]

Many of your symptoms are classic celiac symptoms. Your history is complex and timing with respect to periods of being gluten free and being tested for celiac is critical. Also, it is unfortunate that no biopsy was done when the upper GI was performed since unless damage is advanced it may not be visible during scoping.

You could also have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not damage the lining of the small bowel. There is no test for NCGS but it is 10x more common than celiac disease and the antidote is the same, namely, eating  gluten free. It also sounds like you have other food sensitivities/intolerances and possibly some other autoimmune conditions, all of which are common in the celiac population. 

Apparently, some celiacs have immune systems which do not engage the IGA spectrum but the IGG spectrum. Nonetheless, it sounds like if you want to be certain that you do have or don't have celiac disease you need to engage in a gluten challenge and then get a biopsy done. So, that would mean daily consumption of 10g of gluten or more for several weeks. That's about 4-6 slices of wheat bread for reference.

[Milo Milo]

Thanks trents for the info.

My primary GI suspects that it is NCGS.

I'm actually kind of scared to do a gluten challenge. I've been trying to fix my digestion for over 5 months now. Weeks of that much gluten is highly likely to be a big setback for me  

A question if you don't mind: Do you know how many weeks minimum would be required for a gluten challenge?

Thanks again

An oddity is that if it is celiac then it seems like celiac disease hit me after the endoscopy for some reason. That has me thinking it might be candida or maybe mold. My thinking is maybe the PPI allowed colonization to happen? Just strange that I seemed to be able to eat gluten without issue in December but then suddenly in January it started making me very sick.

There was another thing I forgot about: I have eczema but after the celiac panel I then incorrectly assumed it was dermatitis herpetiformis. I saw a dermatologist and they confirmed it is eczema not dermatitis herpetiformis. Otherwise it seems I could have avoided the gluten challenge to find out.

[Milo Milo]

Another random note: when I changed my diet and started the PPI, I did start eating large amounts of whole wheat pasta but stopped after a week or two when I went low fodmap. I was definitely not gluten free before that but I did ramp up my gluten intake significantly immediately following the endoscopy. I wonder if maybe there's a gluten threshold to trigger celiac disease? Random speculation.