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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Anyone like this endoscopy before bloodtest
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I've been having diarrhea for the last year which I attributed to stress. In the last three months I've been having INTENSE abdominal pain(all over not from gas bc I took anti gas medicine) gas, and bloating. The doctor ordered an upper and lower endoscopy. He found a precancerous polyp (not the cause of symptoms) removed it, performed biopsy on the irritated tissue he saw in my small intestine. Biopsy results came back as increased IELS. he said the results are a sign of celiacs and said he was ordering a blood test to "confirm the diagnosis" he ordered a celiac panel, t4 free, TSH, and lipase test. These other tests make me think he isn't really sure what it is. Could it really be celiacs with just the elevated IELS? (As a Longtime NSAID user I read online could have caused damage to small intestine although hadn't taken any for two months prior to endoscopy). I haven't heard anyone else's story like this, having endoscopy prior to blood work and starting to think I might not have celiacs. Just him saying "to confirm the diagnosis" made me think that's what HE thinks it is. Thoughts ? Appreciate any input! 

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1 hour ago, Cheerymarie said:

I've been having diarrhea for the last year which I attributed to stress. In the last three months I've been having INTENSE abdominal pain(all over not from gas bc I took anti gas medicine) gas, and bloating. The doctor ordered an upper and lower endoscopy. He found a precancerous polyp (not the cause of symptoms) removed it, performed biopsy on the irritated tissue he saw in my small intestine. Biopsy results came back as increased IELS. he said the results are a sign of celiacs and said he was ordering a blood test to "confirm the diagnosis" he ordered a celiac panel, t4 free, TSH, and lipase test. These other tests make me think he isn't really sure what it is. Could it really be celiacs with just the elevated IELS? (As a Longtime NSAID user I read online could have caused damage to small intestine although hadn't taken any for two months prior to endoscopy). I haven't heard anyone else's story like this, having endoscopy prior to blood work and starting to think I might not have celiacs. Just him saying "to confirm the diagnosis" made me think that's what HE thinks it is. Thoughts ? Appreciate any input! 

Yes, you can get diagnosed with biopsies prior to having a celiac (antibodies) blood panel.  That what they did BEFORE the blood test was invented.  

Thyroid issues are common with many who have celiac disease.  It was prudent that your doctor ordered these tests.   The lipase test is linked to the pancreas.  Again, a poor result can be attributed to celiac disease.  

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It sounds like you have a good doctor. Do be sure to keep eating gluten until the blood work is drawn and then you can go gluten free.  Do be sure to read the Newbie 101 thread to learn all you need to do to be safe.

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Yes IELs can be linked to other things.

However, increase in IELs, loose stools, and a good response to a gluten free diet would point to celiac. 

Celiac panels vary lab to lab and not all labs run all of the tests so you might want to post here after you get your results. My brother was negative to the labs run but they failed to run the DGP test in him (which I have tested positive on before). He is a biopsy confirmed celiac. 

Thyroid issues can give you the runs, and lipase can indicate how well your pancreatic and gallbladder system is working, both can also cause tummy issues. Both issues are also common in celiacs as mentioned by others. Sounds like you have a great doc. 

Last, my initial last biopsy was read by a hospital pathologist to be increase in IEL. The slides were read by a celiac specialist at that same hospital after they were re-cut (don't ask, I have no idea) and read Marsh 2-3A damage with areas of normal villi. 

 

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Yes, elevated intra-epithelial lymphocytosis is a possible indication of Celiac disease. That’s what my biopsy said. “Moderate to marked villous blunting with moderate to marked intra-epithelial lymphocytosis and marked chronic inflammation of lamina propia….characteristic for untreated celiac…”

Quote

 

(As a Longtime NSAID user I read online could have caused damage to small intestine although hadn't taken any for two months prior to endoscopy).

What we are finding out about these medicines is incredible. I knew that it could damage the kidneys, and can cause fluid retention.

It’s good you posted here. Yes, usually the order is indeed blood tests first then biopsy, but oh well. My own thinking about autoimmunity is starting to evolve more and more to incorporate the ideas of Dr Terry Wahls, namely that there is little real difference between the various chronic diseases, that at bottom, it all comes down to cellular health. "Cells need certain nutrients in order to do their work, otherwise they begin to malfunction, even die." “When you look at chronic disease on a cellular and molecular level, we see it’s all the same disease – too much oxidative stress, inflammation, and nutrient deficiencies, toxins that are present. We see it in mental health, neurodegeneration, autoimmunity. It’s remarkably similar. Treat at the cellular level.” Dr Terry Wahls.

Plumbago

 

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I had my endoscopy first - I was anemic and having Restless leg syndrome and palpitations.  The doc came out and said "You've got this scalloping of the intestines that we sometimes see in celiac. I took biopsies. I'll order some blood tests" My antibodies were off the charts high. I had no GI symptoms.

Pathologically, celiac is divided into 3 stages: 

  • Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy
  • Grade B1/Type 2: villi still present but shortened 
  • Grade B2/Type 3: complete villous atrophy

Most people that have untreated, symptomatic celiac have some degree of villous atrophy/blunting. But your biopsy still could be celiac. But, I agree with ironictruth. If the labs are positive and you get better with a gluten free diet, I think you have your answer.

When I had a repeat endoscopy 15 months later, I still had IELs on the biopsy (but no villous atrophy) which apparently can take several years to heal. So I have no idea or I'm getting a little cross contamination or this is normal healing. Or it could be from the NSAIDs I take for my aches and pains......Frustrating to say the least.

Let us know what the labs say....

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On 9/20/2017 at 12:33 PM, TexasJen said:

I had my endoscopy first - I was anemic and having Restless leg syndrome and palpitations.  The doc came out and said "You've got this scalloping of the intestines that we sometimes see in celiac. I took biopsies. I'll order some blood tests" My antibodies were off the charts high. I had no GI symptoms.

Pathologically, celiac is divided into 3 stages: 

  • Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy
  • Grade B1/Type 2: villi still present but shortened 
  • Grade B2/Type 3: complete villous atrophy

Most people that have untreated, symptomatic celiac have some degree of villous atrophy/blunting. But your biopsy still could be celiac. But, I agree with ironictruth. If the labs are positive and you get better with a gluten free diet, I think you have your answer.

When I had a repeat endoscopy 15 months later, I still had IELs on the biopsy (but no villous atrophy) which apparently can take several years to heal. So I have no idea or I'm getting a little cross contamination or this is normal healing. Or it could be from the NSAIDs I take for my aches and pains......Frustrating to say the least.

Let us know what the labs say....

He left a voicemail (which I was really thankful for bc it is SO hard to get ahold of someone) and said the celiac panel came back positive and told me to start a gluten free diet and asked me to call him. He said he was going to set me up with a nutritionist. I will definitely check out the newbie page. I am in the navy and I'm pretty sure I get kicked out for this. The first grocery trip was pretty difficult for me. I almost cried thinking about how different my life will be. Thanks for the support everyone ! 

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I am happy you know where you stand.  What a relief!  But I get the shock!  It is normal to go through all the stages of grief.  But soon things will feel normal, really.  Things could certaininly be much worse.

Depending on your job and where it takes you, you might not need to get discharged from the Navy.  

For now, shop the outer wall.  Fresh food, meats, veggies, fruit, and dairy (if you can tolerate it as lactose intolerance is common until you start to heal).  

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The first 2 months of grocery shopping were tough for me!  I went to the store 5 times a week. I felt like I was learning how to shop all over again. I read labels and tried to learn what everything meant and what wouldn't kill me.  I do eat a lot of whole foods, in general, but I use condiments, spices, etc so I was looking into everything.

You can do this!

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