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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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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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