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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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      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
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      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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