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Considering Testing

nicole0392

By nicole0392
in Coping with Celiac Disease

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nicole0392 Newbie
nicole0392
Posted

I have been dealing with stomach issues for 15 years. I have had every test imaginable done and have received no answers as to why I am sick every single day. With the love and support of my wonderful fiancee who doesn't want to see me sick daily he has spent hours on the internet trying to come up with answers. We are considering celiac disease. I eat a lot of gluten everyday and i am not getting any better. My only problem with this disease is that I do have random days where i feel ok and still eat gluten. is that common? also do I have to get tested or can i just go gluten free? my symptoms are bloating, stomach pain, loss of appetite, headaches, light headed feeling, nausea, vomiting, constipation and sometimes diarrhea, gas, FATIGUE. any suggestions or advice would be greatly appreciated.

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Dixiebell Contributor
Dixiebell
Posted

Welcome!

All those sympotms could be celiac symptoms.

No, you don't have to do testing, but it might be to your benefit to so. It is just a simple blood test. At the very least I think you should get your vitamin levels checked and your thyroid.

If you do decide to go gluten free, make sure you get all your testing done first.

Skylark Collaborator
Skylark
Posted

Random days when you feel what you currently think is OK are common. Many celiacs feel so much better off gluten that they realize their OK days were actually still sort of sick. Yes, celiac could easily explain your symptoms.

Do get tested. It's good to know whether you are celiac, or just one of the millions of people who gets sick from gluten. The first stage is just blood tests and can ordered by your GP. You can make the decision about whether to go on with an endoscopy with your doctor's help depending on what the tests show.

nicole0392 Newbie
nicole0392
Posted
  • Author

Thank you for the replies. I think I will get my blood drawn. Although this is not an easy task for me because i have small veins that move around. In the past month i have had blood drawn 5 times. do they run specific blood tests for celiac disease? also i had an endoscopy done about a year ago. do they have to specifically look for something or would they have seen the signs with that test? I am so ready to start feeling better. I never have an energy and the constant headaches and stomach pains are getting old but I am terrified to give up my bread, pasta and candy. I tried gluten free bread once and it was terrible. how do you guys do it? should i have my son tested as well?

mushroom Proficient
mushroom
Posted

Yes, there are several different blood tests that they run looking for antibodies. They would not find these unless they were specifically looking. Much the same is the case of endoscopic biopsies. Sometimes the celiac damage is visible to the naked eye, but it is usually detected by microscopic examination of the biopsy samples. Normally five or six samples are taken because the damage is not uniform throughout the small intestine and is easily missed.

You do not have to give up bread, pasta and candy when you give up gluten, nor cookies and cake. There is some very tasty gluten free pasta around, Udi's makes very good bread, and there are lots of gluten free candies. Now admittedly some gluten free products are nasty (there is a thread running on the forum on our least favorites) but there are many very fine gluten free processed products out there, and a zillion recipes on the internet for making your own delicious treats.

If I were you I would definitely ask them to try and find one of your elusive veins and get the testing done. It may be negative, and it may even be a false negative :unsure: , but if it is positive you KNOW.

nicole0392 Newbie
nicole0392
Posted
  • Author

any tips on what to look for when reading labels? i am scared i will eat "hidden gluten." also how long was it before you noticed a difference?

mushroom Proficient
mushroom
Posted

Here is a link to a previous thread on detecting hidden gluten:

If you eliminate lactose as well as gluten initially, you should see a difference almost right away, fewer GI symptoms - bloating, cramping, diarrhea, etc.

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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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