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duodenal bulb biopsies results??


A.J.Black

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A.J.Black Newbie

I have had several blood tests and a stool test that all came  back negative for Celiac's.  Then  the test results came back from all the biopsies taken. Other than Barrett's Syndrome it also says. Changes in the duodenal mucosa suggest gluten sensitive enteropathy, in the proper clinical setting. ( Villi are short and thick, decreased mucin production by surface epithelium and increased intraepithelial lymphocytes. There is crypt hyperplasia. )

Can  I consider this a positive diagnosis now? I have been avoiding gluten for a couple of months and sometimes it helps sometimes it doesn't. If so after upcoming surgery I plan on going strictly gluten free.


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cyclinglady Grand Master

Were you avoiding gluten when you had the celiac blood panel?  In order for those tests to be accurrate, you must consume gluten daily (1-2 slices of bread) for 8 to 12 weeks.  Exactly what tests were taken?  Many doctors do not offer then full screening.  These include:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Welcome to the forum!

 

  The results from your biopsy might actually have been showing improvement!  What does your doctor say?  

A.J.Black Newbie

Thank you, and every time I ate pasta, bread, crackers,breaded meats and such I would get sick. Some times stomach cramps, throwing up,  gas, bloating,  diarrhea with oily film. A E.r. doc suggested I started trying gluten free or at least avoid bread, pasta and see if it helped.  I also have G.e.r.d, esophagitis,  hiatus hernia, the Barretts syndrome and I.b.s. oh and I'm lactose intolerant as well.

My p.c. had basic inflammation serum test run and a stool test to test for inflammation.  My gastroenterologist took several biopsies in several different areas during egd/colonoscopy. I have my follow up in February with gastro doc scheduled but they are trying to get me in a lot sooner.

cyclinglady Grand Master

No advice was given by your GI after finding villi damage?  You have to wait until February?  Or were you advised to go gluten free?  I am confused.  The gluten-free diet is all or nothing.  There is no reducing or cutting back on gluten for a celiac.  

A.J.Black Newbie

My G.I doc follow up apt isnt until Feb but his office is trying to get me in sooner. It was a emergency room doc that suggested cutting back on gluten. My G.I doc only said you need to come in sooner you have swallowing isues in your throat, Barretts syndrome and a few other issues we need to discus in the office.

Positron Newbie
16 hours ago, cyclinglady said:

No advice was given by your GI after finding villi damage?  You have to wait until February?  Or were you advised to go gluten free?  I am confused.  The gluten-free diet is all or nothing.  There is no reducing or cutting back on gluten for a celiac.  

Cycle, your doctors can not treat you if you have celiac, you can treat yourself however.  The doctors will use you as a cash cow however and run millions of dollars of test on you.  Stop eating gluten, and also be sure that if your cilia are damaged that you can still digest lactose as well.  Seriously ask your doctor what treatment they have for you if you test positive? and have them e-mail you the information so your lawyer can use their lies against them.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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