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Glutening Myself Again For Biopsy

Guest BERNESES

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

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Guest BERNESES
Guest BERNESES
Posted

Hi Everyone- This board is wonderful, first of all and has been so much help. I hope that when things settle down for me, I can add more.

I had the blood test for Celiac's 9 weeks ago (and went gluten-free immediately) and showed a weak positive in my Anti Gliadin (22.7. Above 20 is considered weak positive acc. to my lab). Had multiple tests (won't even go there!) and my first GI discovered gall stones. Before going gluten-free ( about 9 weeks now) I had the smelly gas, the soft stools, nausea, cold intolerance and basically felt like I had stomach flu all the time. After going gluten-free all that disappeared.

Got a second opinion, GI. thinks it may definitely be Celiac's so he is going to do biopsy next Fri. the 15th. He told me to start eating gluten again (not happy about it but had an accident and figured I'd just go with it). Some of my symptoms have returned (that stomach flu feeling) but it's up and down. For example, last night I had three big pieces of pizza (I was terrified) and this morning, I expected to wake up sick as a dog. So far, it's 10:30 am and all I am having is the soft stools, cramps and gas. Should I expect to get sicker? How long does it take for being "glutened" to show up? I've heard the range is anywhere from immediately to 2-3 days. I'm just surprised I don't feel sicker. Thanks for all your help, Beverly

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KaitiUSA Enthusiast
KaitiUSA
Posted

The fact that you are experiencing anything at all should be a sign that your body is not handling gluten. You may or may not get worse. Some people don't even get symptoms when eating gluten but it still does the damage. How long have you been gluten free. They usually recommend being on gluten for 3 months before testing because if you were gluten free healing would take place and could cause a false reading.

Guest BERNESES
Guest BERNESES
Posted

Hi Kaiti- I've been gluten-free so for 2 months so I'm not expecting it to show up in the biopsy- if it does it's a bonus. I took moderately positive bloodwork to be like moderately pregnant- you either are or your not! He's going to do the upper endoscopy anyway because he thinks my acid reflux (which decreased significantly on gluten-free diet) has been severely undertreated. I am content, regardless of what the test results say, to consider myself a Celiac and be gluten-free forever! If it shows up in the test, that's great, if not I will still return to gluten-free after biopsy. Dr. warned me if I had been doing a good job of being gluten-free, it might not show up. That's fine. Thanks for your answer- it was very helpful because this whole process has been so confusing and frustarting and scary! I really appreciate you post. :) have a great day, Beverly

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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?
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      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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