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Having Endoscopy In A Few Weeks


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#1 Momma Bear

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Posted 03 September 2012 - 10:09 AM

Hello. I posted my intro and story already but to recap, I was diagnosed with celiac a couple of weeks ago after presumably having it since childhood (I am 32). My doctor said I had it based on anti gliadin and anti endomysial results (he said they were really elevated but I didn't see the results, so I have no idea what he gauges as 'really elevated'). He wants me to have an endoscopy to see if I have damage, take some biopsies, and evaluate my espophogus because of some reflux issues i have. I have been gluten free for at least four months prior to my diagnosis, but since the diagnosis, we have been super strict and removed it completely from our home and no longer eat out at all. My question is, do I need to go back on gluten for the biopsy? My doctor told me he wanted me on a whole foods diet and no eating out, as well as eliminate all personal care products with gluten (I possibly have DH on the back of my scalp), so without intentionally eating gluten, it's unlikely I will get any in my system. He didn't say anything about needing it in my system prior to the endoscopy. Any thoughts??
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#2 eatmeat4good

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Posted 03 September 2012 - 10:40 AM

It sounds like you are already diagnosed.
And it sounds like your Dr. wants you to be eating strictly gluten free.
Both of these are good things.
Maybe he is just doing the endoscopy to be certain he isn't missing any cancer related to Celiac and to evaluate the level of damage to your intestine. These are good things.
You are not trying to produce damage in order to get diagnosed. It sounds like this is just to evaluate the damage that has already been done and to see if healing is taking place for you on the gluten free diet.
I wouldn't recommend eating gluten prior to this test unless your Dr. specifically tells you to. You are already diagnosed.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#3 ravenwoodglass

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Posted 03 September 2012 - 10:55 AM

It sounds like you are already diagnosed.
And it sounds like your Dr. wants you to be eating strictly gluten free.
Both of these are good things.
Maybe he is just doing the endoscopy to be certain he isn't missing any cancer related to Celiac and to evaluate the level of damage to your intestine. These are good things.
You are not trying to produce damage in order to get diagnosed. It sounds like this is just to evaluate the damage that has already been done and to see if healing is taking place for you on the gluten free diet.
I wouldn't recommend eating gluten prior to this test unless your Dr. specifically tells you to. You are already diagnosed.


I agree with this. You may want to talk to your doctor to be sure he considers you diagnosed. If he does then a challenge is not needed IMHO.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 tom

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Posted 03 September 2012 - 11:45 AM

Yup & yup.
My guess would be that he'd want to look for Barrett's Esophagus (reflux-related), hiatal(sp?) hernia, etc. W/ Barrett's, my Dr wanted a baseline for future comparison.
I'm not sure what it means, but he was particularly interested in some type of "goblet cells" being in unexpected places. Who knows, might be very useful info in years to come.

Sounds like you have a good Dr who wants to be thorough.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#5 IrishHeart

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Posted 03 September 2012 - 11:55 AM

I agree with everyone's thoughts. This doctor is doing all the right things by you. You already have a DX, he is being thorough, and if he does not want you resuming gluten, then he knows what he is doing. This makes it easier on you, avoiding a prolonged gluten challenge. IMHO

I am so glad you have someone so wise taking care of you.
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#6 Momma Bear

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Posted 03 September 2012 - 12:04 PM

Thank you! I was kind of thinking along the lines of the responses given. I did not want to resume eating gluten and my doctor did not suggest this but I was curious as to why he would proceed with a scope despite him telling me that he is absolutely certain I have celiac (he did say I was one of the worst cases he has seen, though I am not sure what his experience is or what he meant by that, especially since I am a new patient to his office). I am going to keep up with the gluten free in the meantime and when I do have the scope, I will share what the gastroenterologist finds. Again, thank you!!! I am so grateful for this forum :-)
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