Endoscopy Tomorrow!

[nekome]

Hi everyone!

 

I posted back in January about looking into getting a second opinion. My problems with gluten really surfaced late last summer and I saw a gastroenterologist who did an endoscopy on me last December-- he said everything was fine and I wasn't convinced so I decided to go to another doctor this time making absolutely sure they specialized in Celiac (and where better than the Columbia Celiac Center?).

 

Ever since January, I've been on a gluten challenge though I've been bad about being consistent in poisoning myself and also bad with getting minimum amounts. I guess most of the time my body just goes on autopilot and wants to eat gluten free. I worry I may not have done the challenge correctly.. but I wouldn't do this again. It's been a long, long journey since I started and regardless of what the results are tomorrow I learned a lot about myself.

 

It has been confirmed that I have the DQ8 gene. A hydrogen breath test came out positive for fructose intolerance. (I was so worried about gluten, I didn't even think about anything else!) I will be cutting out gluten for sure.

 

I went through all this for my family so that perhaps I could help someone suffering from digestive issues. I just got engaged so this experience is all the more poignant to me.

 

Even if I wish it didn't take me being sick for a while, I am thankful for the changes the process has brought about. My desire to build my health has never been stronger. After a lifetime of being in bad shape both physically and mentally, I feel like freedom is more in my grasp than I ever thought possible.

[powerofpositivethinking]

no need to post any info on amount of biopsies, etc. since you're going to Columbia, which is awesome btw    did you have any of the blood tests done?  good luck, and let us know how it goes!!

[nekome]

no need to post any info on amount of biopsies, etc. since you're going to Columbia, which is awesome btw    did you have any of the blood tests done?  good luck, and let us know how it goes!!

 

I can't tell you enough how fortunate I feel to be getting treatment there! Yes, I was told that my blood tests turned up negative for Celiac but there's inflammation (IgA levels are above ref. range) and my vitamin levels are on the low side (deficient in Vitamin D). But thank you! I will be posting on the results!

[taynichaf]

So, what did the biopsies show?!

[nekome]

Hi taynichaf,

 

I won't have the full report until next Tuesday, but my GI told me he found erosion and a small nodule. I'm still not sure what any of it means so I'll just have to sit tight until then..

[nekome]

Hi everyone!

 

So I met with my GI yesterday. He said aside from the slight erosion he saw (which now I have to take Prilosec every day for that) and a small nodule (Pancreatic heterotopia which he said is congenital and nothing to worry about) that there is no evidence of Celiac. He said that even with my Celiac gene, that I don't have to follow up on that. (I thought people would get screened on a yearly basis or something like that thus why I asked about checking on it) No H. Pylori so that's also good.

 

I definitely have to watch the fructose due to the fructose malabsorption but my GI is kinda worried about my diet becoming overly restricted since I told him I'm choosing to eliminate gluten sources as well. (My vitamin levels have been consistently on the lower side). He mentioned I might want to look into the FODMAPS diet and then said I could maybe try to eat gluten again from that? But, I feel that I'm better off the gluten. I ate some gluten last week on purpose to see what would happen and my eczema on my foot itched intensely shortly after. That night I couldn't sleep-- it itched so bad. Getting that checked out by a derm. in July but at this point I guess it can't be dermatitis herpetiformis because of the negative Celiac blood tests and negative biopsy at this point..

 

All my symptoms still persist so.. I have to do stool samples and a colonoscopy to rule out parasites. Fun, fun.

 

So! After all, no Celiac disease. Kinda surprised.. going into all this, especially based on the Entero Lab results considering how out of range I was (Fecal Anti-gliadin IgA      185 Units   (Normal Range is less than 10 Units). I'm not knocking Entero or saying I regret it. I still think it was helpful just confused. Ah well, back the drawing board.

[powerofpositivethinking]

did you ever get the blood tests?

[nekome]

Yes, my GI said based on the blood tests he ran, no Celiac (and this was after a gluten challenge that ran from January to April).  I don't know if this helps but..