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Fraud?

Whirlwind

By Whirlwind
in Coping with Celiac Disease

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Whirlwind Newbie
Whirlwind
Posted

So, I don't have Celiac disease, I don't think. My mother and sister have been diagnosed with it. (Back in the 90s.) My other sister went through the testing and does not.(A few years ago.) I would get tested but my situation presents a bit of a problem. My mother after finding out that my oldest sister and her had Celiac decided to take gluten out of all of our diets. So, I'm now 25 and I don't eat gluten. I have never eaten gluten. Cross contamination of course. But, never the real thing. So, that makes the testing a bit of a problem seeing as you need to have gluten in your system to test if you have the disease. And I'm not going to mess my body up to get the definitive answer of Celiac.

 

But, I don't eat gluten so I'm in the boat of having to give that information to people when it comes up. And I don't make a big deal out of it. And I also feel like a bit of a fraud. Because, some will ask me what I have and I don't want to explain so someone that paragraph above every time I can't/decide not eat a sandwich.

 

So, I don't know if I fall under the people that are inflicted by a disease I might possibly have or just one of those people that 'have a diet'. And I have said I am Celiac and sometimes Gluten Intolerant. But, I'm neither. Not really. I just am in a weird position.

 

Any thoughts? Is there any way to get out of limbo?

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captaincrab55 Collaborator
captaincrab55
Posted

Gene testing may rule out Celiac Disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

You mention CC. When you have gotten CC have you reacted? If not then you might want to go ahead and do a gluten challenge and get tested. Have you asked your Mom if you were tested when you were to little to remember?  You could get copies of your medical records and see if there was a reason, other than your two family members being celiac, that your Mom also kept you gluten free. You may have shown signs like tummy issues or growth problems that lead your parents to put you on the diet without testing or you may have had a low positive.

kareng Grand Master
kareng
Posted

So, I don't have Celiac disease, I don't think. My mother and sister have been diagnosed with it. (Back in the 90s.) My other sister went through the testing and does not.(A few years ago.) I would get tested but my situation presents a bit of a problem. My mother after finding out that my oldest sister and her had Celiac decided to take gluten out of all of our diets. So, I'm now 25 and I don't eat gluten. I have never eaten gluten. Cross contamination of course. But, never the real thing. So, that makes the testing a bit of a problem seeing as you need to have gluten in your system to test if you have the disease. And I'm not going to mess my body up to get the definitive answer of Celiac.

 

But, I don't eat gluten so I'm in the boat of having to give that information to people when it comes up. And I don't make a big deal out of it. And I also feel like a bit of a fraud. Because, some will ask me what I have and I don't want to explain so someone that paragraph above every time I can't/decide not eat a sandwich.

 

So, I don't know if I fall under the people that are inflicted by a disease I might possibly have or just one of those people that 'have a diet'. And I have said I am Celiac and sometimes Gluten Intolerant. But, I'm neither. Not really. I just am in a weird position.

 

Any thoughts? Is there any way to get out of limbo?

 

 

Sure, eat gluten for a few months and then get tested.

CK1901 Explorer
CK1901
Posted

Go talk to an allergist, explain the situation, and discuss whether you should do the gluten challenge. Also i agree you need to ask your mom for your medical records and talk to your primary about whether or not the diet is really necessary for you.

StClair Apprentice
StClair
Posted

A genetic test will give you more info, and then you can decide better how to proceed. If it indicates that Celiac is very likely, then you may want to just continue the diet. If the results show the chances are less likely then you can commit to six weeks of a cracker a day, and then go through the testing. That's what I would do if it were me.

Whirlwind Newbie
Whirlwind
Posted
  • Author

Thank you. Your guys suggestions have been very helpful. I didn't know that you could get genetic testing first. I thought it was strictly the gluten challenge and  biopsies and similar to diagnose (and seeing as what I said because about not having gluten in my diet).

 

I have talked with my mother before and she put us all on the diet because it easier for the household to eat all the same food and she became a bit of a health nut after it. She also took out sugar our diets because her family had a history of diabetes.

 

Again, thanks very much. :D

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Googles Community Regular
Googles
Posted

The genetic testing wont tell you if you have celiac, but it will tell you if you have one or both of the two identified genes that cause celiac. 

Sammykins Newbie
Sammykins
Posted

It will also tell you the likelihood of you having celiac by percentage (or at least my test did).

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      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
      Accuracy of testing concerns

      By trents · Posted

      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
      Accuracy of testing concerns

      By McKinleyWY · Posted

      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
      A little about me and my celiac disease

      By trents · Posted

      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
      Gluten Free Coffee

      By Peace lily · Posted

      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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