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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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      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
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      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
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