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How Were You Diagnosed?

Guest BERNESES

By Guest BERNESES
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

How were you diagnosed?  

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

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Guest BERNESES
Guest BERNESES
Posted

1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only

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elonwy Enthusiast
elonwy
Posted

1. Positive Bloodwork

2. Inconclusive Biopsy

3. No gene test

4. Positive dietary response

Guest BERNESES
Guest BERNESES
Posted

Just curious. Thanks everyone, B

gf4life Enthusiast
gf4life
Posted

The poll isn't working, so I'll just post:

1 Negative blookwork

2 Negative biopsy

3 Positive gene test

4 Positive dietary response

I also was positive on the Enterolab stool tests. I had been gluten free before the blood tests and biopsy and don't think they were accurate. Not to mention that I get severely ill for weeks following accidental gluten exposure!

CMCM Rising Star
CMCM
Posted
1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only

1. Very positive response to diet.

2. Stool test

3. Gene test

KaitiUSA Enthusiast
KaitiUSA
Posted

1.Positive Blood Work

2.Positive Gene Test(DQ2)

3.Positive Response to Diet

carriecraig Enthusiast
carriecraig
Posted

Positive bloodwork

Positive biopsy

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Canadian Karen Community Regular
Canadian Karen
Posted

Positive bloodwork followed by positive biopsy

Karen

dlp252 Apprentice
dlp252
Posted

I didn't actually vote using the buttons, because I don't seem to fit the categories, lol.

I was actually "diagnosed" by Enterlab as Gluten Intolerant and Casein Intolerant. I have seen positive response to the diet and have one of the main genes predisposing one to Celiac (along with any number of stressful events in recent years to act as a trigger), so I have put the pieces together myself.

jenvan Collaborator
jenvan
Posted

positive bloodwork, positive biopsy

2Boys4Me Enthusiast
2Boys4Me
Posted

My son was diagnosed by positive bloodwork and positive biopsy.

I cannot say that there has been a positive dietary response. He has gained 2 lbs in the last five months and seems a bit happier, but certainly still has crazy mood swings (occasionally brought on by having a big brother who likes to push his buttons). He had no "obvious" symptoms from consuming gluten. He was only tested for Celiac because of low iron levels, and the liquid iron wasn't really bringing his levels up. He is the only one in our immediate family with Celiac, and of our extended family only my Mom was tested, and she doesn't have it either.

codetalker Contributor
codetalker
Posted

Biopsy and positive response to a gluten-free diet when I was a baby. Then at about age 4, the doctors thought I had outgrown it so they put me back on a regular diet. For the next 35 years, no one ever told me I had been DX'd with celiac disease.

In my 40's, I finally figured out what celiac disease was and started the diet on my own. Don't know if that counts as a second DX or not.

Guest BERNESES
Guest BERNESES
Posted

Thanks for all your responses. Don't know why I can't figure out the new poll function. Best, B

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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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