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morningstar38

Never Even Thought This Was Possble!

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I had an upper EGD last July due to an inherited possiblity of esophageal cancer after I had symptoms of GERD and the pictures showed gastritis as well as possible barrets syndrome. Well, the gastritis seemed to go away, but the diahrea NEVER went away! I have been suffering with diarrhea ever since!

So when I had my follow up appointment I mentioned the above points, and the doc got very concerned. I now have an appointment for "routine" blood tests as well as a colonoscopy and since they didnt' get the necessary biopsy I also get another upper EGD as well! UGH... I Never thought about the possiblity of Celiac disease until I started researching the symptoms and remembering my history (I had horrible stomach problems as a child). I now have epilepsy which I understand there is a connection.

She asked about fat in my stool and other things which of course on the spot I couldn't think about, but now I know for sure I have! I also stopped eating gluten for about 6 days and I felt so much better, I have to start again to get ready for the tests on Nov 1 and 3...but after that....NEVER again...I don't care what the results are!!!!


Chronic depression

Epilepsy

Neuropathy (wheat associated)

Cataracts & chronic eye problems

Obese (gluten/casein addiction)

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Hello and welcom to the forum morningstar. Yes, it is most unfortunate that doctors seldom think of celiac disease - you are actually lucky that yours did consider the possibility. Make sure she takes at least 6-8 samples in the biopsy as some doctors will only take two or three. The damage is usually not unfiorm and it is often missed if insufficient samples are taken. You will be able to go gluten free as soon as the blood tests (assuming they are the celiac blood tests) and endo are done - you don't have to wait for the results to start feeling better :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Unfortunately biopsies for celiac are not routine on an EGD, unless they are doing it specifically for it. Some day I wish that the minimum of 8 samples would be part of a standard EGD. Your story is all to common. At least your doctor was smart enough to consider celiac. A lot of the time if the patient didn't mention the possibility, some of us might not be diagnosed.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Hello and welcom to the forum morningstar. Yes, it is most unfortunate that doctors seldom think of celiac disease - you are actually lucky that yours did consider the possibility. Make sure she takes at least 6-8 samples in the biopsy as some doctors will only take two or three. The damage is usually not unfiorm and it is often missed if insufficient samples are taken. You will be able to go gluten free as soon as the blood tests (assuming they are the celiac blood tests) and endo are done - you don't have to wait for the results to start feeling better :)

Yes Mushroom, actually she said the celiac blood tests were "Routine". I don't know what they plan to do with the EGD I had one earlier this summer (for barrets syndrome ...2 relatives died of esophageal cancer) and they didn't get the right bioposy so they wanted to do that one again, also a colonoscopy. However, once she sees the celiac blood tests results, she will probably want to add the celiac biopsy to the tests to the ones I am already having. (hopefully!)


Chronic depression

Epilepsy

Neuropathy (wheat associated)

Cataracts & chronic eye problems

Obese (gluten/casein addiction)

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Yes Mushroom, actually she said the celiac blood tests were "Routine". I don't know what they plan to do with the EGD I had one earlier this summer (for barrets syndrome ...2 relatives died of esophageal cancer) and they didn't get the right bioposy so they wanted to do that one again, also a colonoscopy. However, once she sees the celiac blood tests results, she will probably want to add the celiac biopsy to the tests to the ones I am already having. (hopefully!)

Don't just hope, insist on it! :P Sometimes you have to be pushy.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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