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Random Call From Gi After Writing Me Off As Ibs

SLB5757

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SLB5757 Enthusiast
SLB5757
Posted

As some of you may know I had allergy testing done Monday that resulted in many high results to a number of foods and a bunch of seasonal allergens. After teh allergist faxed the results to the gastro - his secretary called and informed me that they want to now to a "Capsule Endoscopy" to further evaluate Celiac even though blood work is negative.

I am glad they are going a step further - but I am a cautious and very thorough person. I googled the capsule endoscopy and these are my concerns.

1) Capsule endoscopy doesn't allow for biopsy which is considered the "gold standard" in diagnosis.

2) The website I found said that it is up to the GI doc to review 10's of thousands of pics that the scope takes and most likely the doc would miss something or not review them all. It also states that pics can be blurry, and that it is hard to tell where in the body the pics are from since it takes pics for 24 hours very slowly.

3) The prep is colonoscopy like including laxatives and what have you...uck!

Why would he order capsule over the standard with an option to biopsy? Seems very strange to me. Do I need to question this (don't want to make him upset questioning his knowledge), or is this routine to check for Celiac?? Im going to google a little more but thought I would pose it here for response. I am happy they are looking into things - just nervous that maybe I have a doc that isn't very versed with Celiac or the testing involved.

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Lisa Mentor
Lisa
Posted

Testing is not as reliable as we would like at this time, but I think the Pill Cam is about as good as it gets. An endoscopy can miss effected areas, resulting in a non-conclusive diagnosis.

As with most tests for Celiac, a negative result is not conclusive that Celiac is not an issue.

This article is over two years old, but yet informative:

https://www.celiac.com/articles/21474/1/Vid...ease/Page1.html

happygirl Collaborator
happygirl
Posted

There is information that the pill cam will become part of the 'diagnostic' standard in the coming years, if not sooner.

QueenOfPain Rookie
QueenOfPain
Posted

I think it's probably legit. I had a positive blood test, but a negative biopsy. 3 months after that I was still having problems and still had no answers. My GI doc at the time suggested doing another endoscopy, and then said that if it came back negative AGAIN they would do the small bowel capsule. However, I decided to forgo the additional tests and just tried the gluten-free diet. Good luck! I hope you get to feeling better soon!

SLB5757 Enthusiast
SLB5757
Posted
  • Author

Hmmm...maybe I should do a little more research before I panic. I will talk to the doc's assistant today to find out more information. I am already on day two of a gluten free diet though and really want to see if this helps. Already I feel a bit less "foggy". Maybe wishful thinking - but I know I have suffered with something all of my life. From what I read on the boards many have suffered from similar things that I have encountered throughout the years.

Stillbirth

Hypoglycemia

Mono

Short Stature (5 feet)

Multiple/severe allergies

Diagnosed as IBS

Diah my whole life

Symptoms flared after pregnancy 4 years ago

Dental enamel issues (severe) - Dentists have asked if I was bulimic because my enanel was so terrible.

Fatigue

Severe gas/bloating/belching/distention after meals

Anxiety/depression/moodiness

Severe anemia while pregnant (havent been tested since) wile PG they wanted to do IV Iron if I didnt take multiple supplements. *Both children have always tested low for Iron as well. Daughter had stool tests run as a newborn because she would have up to 20 loose stool diapers in a given day. We wnded up switching her to Soy formula and kept her on that until she was 2. When my lil guy was born he also had the loose stool issue and had to be put on Isomil until after 2 years of age also.

I am sure there are a zillion other things to list but honestly I never even attributed the above mentioned things to Celiac or Gluten Sensitivity.

Lisa Mentor
Lisa
Posted

Sometimes, the more we read on the internet, the more confused and paniced we become.

Follow through with your pill cam and if it that does not remedy any solutions, continue on.

It is very important that you CONTINUE TO EAT GLUTEN until all your testing is finished. Healing can begin quickly and throw off your test results, if indeed you have Celiac.

leadmeastray88 Contributor
leadmeastray88
Posted
I am already on day two of a gluten free diet though and really want to see if this helps.

Since you are getting the capsule endoscopy you absolutely NEED to get back to eating gluten ASAP or you risk getting false negative results.

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