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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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