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Wondering If I'm Gluten Sensitive


kimann79

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mushroom Proficient

Lin k to a Biocard posting:


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passionfruit877 Apprentice

I changed my mind. I've read nearly every thread on this board on enterolab and I'm not convinced it's legit. Now I'm left wondering what to do. I can't afford, without insurance, to request blood testing or a biopsy from my doctor. I'm not sure I will have the will power or determination to stay on the diet with no proof that it's necessary. This is so frustrating. I've had to deal with all these issues with thyroid disease and I'm tired of doctors and feeling like a hypochondriac. I'm just not sure what to do.

If you've already been tested you may just try the diet yourself. I would not recommend it if you haven't been tested because now I have been off it too long to be tested (and it makes me sick to eat it again). My husband has been supportive since he saw my positive changes, and now eats mostly gluten free himself. I make honey mustard chicken, stew, pasta, you name it, all gluten free. I had terrible constipation for almost 3 years, and it wasn't normal constipation, but more like I lost the urge to go. It took about 3 months on the diet to correct it. Honestly, it didn't take long to see a difference. I tried it for 2 weeks and saw my bloating go away. When I tried to eat it again after those two weeks I definitely noticed that I didn't feel good.

I have been struggling with not being diagnosed either, however, I feel so much better off of it and found a doctor that supports me in that.

passionfruit877 Apprentice

Also, I can't speak for everyone else, but I developed a sort of aversion to gluten, because I could tell it was making me sick. It was hard at first, but it got easier.

kimann79 Apprentice

Thanks everyone, for being so supportive. I think I'm going to order the biocard test because it is so inexpensive. If it turns out positive I will follow up with a doctor. If it's negative I'm still going to go gluten free for a while to see how I feel. It's only around $40 and that's with shipping- much more palatable than the hundreds enterolab charges. I really don't need to know if I am genetically predisposed towards celiac or if I have malabsorption issues.

I didn't realize everyone produced antibodies to gluten. I would think your body would only produce antibodies if it saw gluten as a toxin.

I also didn't realize I would have to eliminate my beauty care products as well as gluten containing foods! That stinks. I just bought all new makeup. What ingredients should I avoid in beauty care products?

I keep reading my husband articles on the danger of undiagnosed celiac/gluten intolerance. Poor guy. He's really tired of me talking about my bowel habits over dinner and reading medical journals before bed. I think, though, that it has convinced him I should do this. And if I'm doing it, I may as well have my girls do it too...

Actually, I'm hoping he will hop on board- though I doubt he will- because he has severe ADHD and suffers from bouts of depression (which is bizarre because he is generally an optimistic, cheerful person). He's also nearly 75% Irish and I read the Irish and Italians (which I mainly am) are more genetically predisposed towards celiac.

I told him tonight at dinner (after discussing said bowel problems) that I almost hope I have it. It would give me an answer. The diet part would be fairly easy for me. It's being ill all the time and not knowing why that makes me want to tear my hair out. If my test is positive and I respond well to the diet it will be almost freeing. I've been ill my whole life. This would give me hope that I won't have to spend another thirty years suffering. It would also reassure me that I will more than likely be sparing my children future thyroid disease.

I'm really glad I stumbled across this group. You're all very supportive and encouraging and, not surprisingly, much more educated on this issue than most of my doctors! :)

One more questions. Is celiac disease a result of undiagnosed gluten intolerance? Like, if I have an intolerance and keep eating gluten will I one day develop celiac or are the two separate responses and one won't necessarily be at risk for celiac if they are gluten intolerant?

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    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
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      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
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