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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
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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