Steeb122

2 hours ago, squirmingitch said:

Do you have copies of your celiac blood panel? You should get them if you don't have them. this is true of all medical records. From that you would be able to tell which blood tests in the full panel that he did. There are actually 6 but often only 1 or 2 get done as a screening measure. Sometimes your insurance will not pay for more than just the 1 or 2 as a screening & you have to go to a GI in order for your insurance to pay for the full panel.

Sometimes (lots) docs think 1 positive in the panel does not mean celiac & say you're negative. Sometimes they think a low positive means you are negative. NO, a positive is a positive even if it's not sky high. Sigh.

For the endoscopy, how many biopsies were taken & from what areas? There should be 6 biopsies taken.

Ironically the gastroenterologist called me today and said she’d let me know the results of my biopsy in 7-10 days...whoops lol hey there is hope for me to have this disease! So this whole thread was kinda pointless. I got a separate call yesterday telling me that everything had looked normal so I assumed that included the biopsies. 

7 hours ago, Ennis_TX said:

JMG hit pretty on here sounds like Non Celiac Gluten Sensitivity, we have seen plenty of people with it show up here, and some of our regulars have it. It is a really medical condition despite what some doctors might say. I also second JMG on the food diary, I would say you might want to try reintroducing seeds like pumpkin, perhaps later with some digestive enzymes...they are hypo allergenic...but hell I am allergic to corn so I can not judge the immune system. I just live on pumpkin seeds, and tree nuts....also have the peanut and soy issues along with a whey allergy and a lactose intolerance for over a decade......dairy is evil lol.

On  a side note your VERY blessed to have found a love interest that requires the same medical diet as yourself, having celiac himself will be a huge support for you and make keeping a gluten free home and having meals much easier.

My primary care doctor (who gave me the blood tests) told me I likely had NCGS as well after cutting out gluten (can’t really cut out wheat without cutting out gluten, mostly). I always just assumed that was it but what triggered the idea of having celiac is that I still had minor pain and issues when I knew I hadn’t been glutened, and no other food intolerances/sensitivities/allergies I have cause the same reaction as gluten. I read every label and I cook for myself 95% of the time, accepting that the odds are I’m going to consume something I shouldn’t when I eat out. But the pain occured every time I ate and lingered after. I told my pulmonologist (who has me on 6 months of antibiotics becausw I have latent TB, and he has to ask about my stomach because of possible ulcers caused by it) what was happening and that I just chalked it up to my body not being entirely healed yet from the foods I was eating. That’s when he told me that food intolerances/allergies don’t leave damage and the reaction to anything I may eat should be gone in 24 hours and if I’m truly following an allergen free diet I shouldn’t be having any pain. Then he told me that if it’s celiac the pain would make more sense, so that’s what sparked my curiosity. I originally had the endoscopy scheduled to check for ulcers but I added that I wanted to have a biopsy for celiac as well. I know you didn’t ask for all that info, just trying to be clear lol.

and yeah, it’s nice to have him around for gluten free purposes but it doesn’t help that he loooooves milk and peanut butter. ?

37 minutes ago, kareng said:

I think I need to clear up a few misconceptions here.

celiac is  it an allergy and will not show up on any sort of food allergy testing.

Negative Celiac blood work is not common.  It can happen, but it isn't not common.

celiac damage does not show in the stomach - it is in the small intestine.

 

 

New to the site, not really sure how to reply but I think i just quote you? Lol

Yeah idk how to reply lol

I was having severe digestive problems that randomly appeared about a year and a half ago, along with neurological and other physical issues/pain, and extreme fatigue and muscle weakness. It seemed that every time I ate I had to run to the bathroom and nothing I ate seemed to digest. I lost 12 pounds in one month which is drastic for me, being only 5’. Just a bunch of stuff happened. So I payed attention to what I was eating and what would cause these issues. Decided I likely had a dairy issue and a wheat issue so I tried (not hard at all) to eat less of those and the symptoms didn’t go away. Got a blood allergy test, turns out I have problems with wheat, dairy, soy, peanuts, tree nuts, seeds, and shellfish. That day I cut all of those out of my diet. Drastically felt better immediately and whenever I would cave and cheat, wheat/gluten/whatever would absolutely destroy me. Either constipation or diarrhea, extreme abdominal pain, nausea, anxiety, even delusions, seriously feeling as though I was going to die. And these would persist for even up to a week after the one-time consumption of gluten. So I stopped entirely, and I went back to feeling pretty good but I found that I was still having abdominal pain and issues. Mentioned it to my doctor and said I thought it was just my body detoxing from the food allergies, and he told me that I shouldn’t have any prolonged systems as any no-no food I cheat with or accidentally consume will be out of my body in 24 hours. So that’s when I started wondering about celiac because my boyfriend has it and any time I complain he says it sounds exactly like what he experienced, and it would explain why I feel a lot better without gluten but still have issues. The allergy blood test was negative for celiac, but so was my boyfriend’s (his was really bad when he got his diagnosis, had been hospitalized for weeks before they finally figured it out, he was even given a feeding tube and having gluten pumped into him and they accused him of being anorexic because he continued to lose weight in the hospital.....shows how much these doctors know what they’re doing) and apparently that’s common (the negative blood test). So I saw a gastroenterologist and requested an endoscopy. Did a gluten challenge for about 4 weeks which was absolute hell, got the biopsy, they found nothing. Not only that - they said my stomach looks completely normal.

Regardless, I’m going back to my allergen free diet. But I’m really frustrated. I have these issues still and no diagnosis but within all the research I do, all signs point toward celiac. Think I’m just gonna keep going with the diet and see if the pain and issues work themselves out and from there likely diagnose myself.

anybody in a similar situation or have any advice?