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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
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Diagnosed&Dealing

Does Something Other Than Celiac Cause Villous Blunting?

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I was diagnosed with Celiac in Jan 2011 with a positive biopsy. My blood test was negative, but at the time I was told that is common and the biopsy is the gold standard. The first 3-4 months on gluten-free diet were WONDERFUL!!! No stomach issues at all. After being on a gluten-free diet for 7 months I went to another Dr for a second opinion because I started having some stomach/digestive issues again about 3 months ago and my previous Dr just wanted to put me on prilosec and wouldn't consider any other allergy possibilities. This new Dr said she doesn't think I have celiac because my blood test was negative. I thought the biopsy was the true teller of celiac. Has anyone else had this type of situation? I am nervous to try gluten becase the few times I think I have gotten it I have gotten very sick for a couple of days. Any thoughts????

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I was diagnosed with Celiac in Jan 2011 with a positive biopsy. My blood test was negative, but at the time I was told that is common and the biopsy is the gold standard. The first 3-4 months on gluten-free diet were WONDERFUL!!! No stomach issues at all. After being on a gluten-free diet for 7 months I went to another Dr for a second opinion because I started having some stomach/digestive issues again about 3 months ago and my previous Dr just wanted to put me on prilosec and wouldn't consider any other allergy possibilities. This new Dr said she doesn't think I have celiac because my blood test was negative. I thought the biopsy was the true teller of celiac. Has anyone else had this type of situation? I am nervous to try gluten becase the few times I think I have gotten it I have gotten very sick for a couple of days. Any thoughts????

Your Dr. is wrong! A positive biopsy trumps the negative blood test (and vice versa). If you've been gluten-free for several months, it is quite likely that you will have a negative blood test. You do have celiac and need to stick with a strict gluten-free diet. There's no way I would go back on gluten to satisfy a doctor's curiosity.

After being gluten-free for awhile, you may have developed other intolerances to dairy or soy. It might be worth eliminating those from your diet to see if your symptoms improve.

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Your Dr. is wrong! A positive biopsy trumps the negative blood test (and vice versa). If you've been gluten-free for several months, it is quite likely that you will have a negative blood test. You do have celiac and need to stick with a strict gluten-free diet. There's no way I would go back on gluten to satisfy a doctor's curiosity.

After being gluten-free for awhile, you may have developed other intolerances to dairy or soy. It might be worth eliminating those from your diet to see if your symptoms improve.

Thank you for the quick reply. This dr put me on an antibiotic for a bacterial overgrowth. Is it common to develop bacterial overgrowths from Celiac?

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I am going to gently disagree here. Read Elaine Gottschall's work "Breaking the Vicious Cycle" and you will find that soy can cause the same villus atrophy as seen in celiac. I found, after positive biopsy and negative serology that I have a much more painful reaction to soy than that of gluten. Gluten is bad, mind you, but soy is much worse. I have been noticing some residual problems after having gone through the SCD approach as I tried to add some fruit back into the diet. Cramps, both muscular and intestinal, as well as palpitations and general problems. I thought, at first, it was related to how much fat an protein I was consuming. Stopped the fructose intake 4 days ago and things are much better. There were other strategies I employed along with this but the driver for me was what I learned from the above mentioned book. I was shocked to read her take on over diagnosis of celiac and the fact that soy can create the same appearance in the gut. Food for though, perhaps?

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That's interesting, chasbari. I know a lot of people have problems with soy but I honestly didn't know it could cause villous atrophy.

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I am going to gently disagree here. Read Elaine Gottschall's work "Breaking the Vicious Cycle" and you will find that soy can cause the same villus atrophy as seen in celiac. I found, after positive biopsy and negative serology that I have a much more painful reaction to soy than that of gluten. Gluten is bad, mind you, but soy is much worse. I have been noticing some residual problems after having gone through the SCD approach as I tried to add some fruit back into the diet. Cramps, both muscular and intestinal, as well as palpitations and general problems. I thought, at first, it was related to how much fat an protein I was consuming. Stopped the fructose intake 4 days ago and things are much better. There were other strategies I employed along with this but the driver for me was what I learned from the above mentioned book. I was shocked to read her take on over diagnosis of celiac and the fact that soy can create the same appearance in the gut. Food for though, perhaps?

Thanks for the reply. You mention soy causing similiar blunting...this is the first I have heard of this. Also you mention fructose causing you issues. With a positive biobsy, were you diagnosed with Celiac? Also if you seem to have a worse reaction from fructose and soy, do you now eat gluten without a problem?

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WHat explanation did this doctor give for the blunting?

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WHat explanation did this doctor give for the blunting?

The original diagnosis back in Jan was celiac due to the villious blunting. A gluten-free diet did wonders and I felt great for over 3 months. Then I started having some mild nausea and stomach issues, returned for a follow up biopsy and was told (after 5 months on gluten-free diet) that my intestines no longer showed signs of celiac (good this was the goal) but nothing was really idenfied as cause of bloating and nausea. I went off milk for 2 weeks with no change (milk has a tendency to settle my stomach) and after the second endoscopy I was told there was no sign of lactose intollerance. The first dr suggested GERD (even though I had no other symptoms of GERD) and the new Dr is saying it is likely not celiac but something else, possible bacterial overgrowth or soy allergy? I am so confused and just tired of feeling crappy. It surprises me that different Dr think totally different things based on the same clinical evidence?????

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I really don't know anything about bacterial overgrowth but I know there are some members here that are knowledgeable. You might also use the google search button at the top right of your screen to see what threads there are so you can read up on it.

Personally I'd give up soy to start with...the problem is that it seems to sneak into everything. I don't know why manufacturer's have to include it in so many things.

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I really don't know anything about bacterial overgrowth but I know there are some members here that are knowledgeable. You might also use the google search button at the top right of your screen to see what threads there are so you can read up on it.

Personally I'd give up soy to start with...the problem is that it seems to sneak into everything. I don't know why manufacturer's have to include it in so many things.

Thank you. I may end up going this route, but you are right....wheat and/or soy seem to be in EVERYTHING!!!

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Thank you. I may end up going this route, but you are right....wheat and/or soy seem to be in EVERYTHING!!!

You might also want to ditch dairy for the time being just in case you have an unknown problem with it. You can always try adding it back in later.

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Thanks for the reply. You mention soy causing similiar blunting...this is the first I have heard of this. Also you mention fructose causing you issues. With a positive biobsy, were you diagnosed with Celiac? Also if you seem to have a worse reaction from fructose and soy, do you now eat gluten without a problem?

I have gone into more detail about my journey on another discussion here but will recap a bit. I have a host of autoimmune issues and several years after being positively Dx'ed for rheumatoid Arthritis and Sjogren's I was diagnosed for celiac by endoscopic biopsy following a negative blood panel but very high RA factor. I responded positively to a gluten free diet in that I no longer felt like I was going to die the next day but still had a host of complications. When I went totally grain free as in rice, corn, and any other alternative grain, I turned a corner and started to get noticeably better. I lost weight way too fast though and could not keep my hunger in check. There was a period early on when I ate nothing but meat for a period of about two weeks. In hindsight I realize that is when I felt the best. No carbs at all. I went back to a lot of fruit and the raging hunger came back. For a period of about a year I could not go more than about an hour without needing a lot of calories and I was still losing weight. I switched to lower carb but kept a modicum of fruit in the diet and got a bit better and actually started to gain a little bit of muscle mass. I finally read Elaine Gottschall's book "Breaking the Vicious Cycle" and that is where I first read about soy being able to cause villous atrophy similar in appearance to celiac damage. I have also read about enough anecdotal evidence here on the incidence of celiac symptom onset being coincident with antibiotic use in many folks. That is the discussion I expanded more on this whole theory. I found it interesting because a number of years ago after my lupus indicators were so high (unusual for a male) I read on the SLE foundation website that while antibiotics may prove to be a trigger for episodic flares of lupus symptoms, the foundation was unwilling to take the position that antibiotics might be causative. I began to examine the whole gut flora research project at the NIH. Any of my turning points with my autoimmune issues always seemed to be linked to broad spectrum antibiotic use. In light of Gottshall's writing this seemed to put a mechanism in place for gut flora disruption, small intestinal bacterial overgrowth and candidiasis. I decided to take a number of steps to re-establish a functioning gut flora that seemed to have been damaged through my lifetime of antibiotic overuse. I started consuming a lot of raw coconut and coconut oil to knock down yeast overgrowth with the naturally occurring capryllic acid. I cut carbs way down and upped my intake of protein in the form of meat, tuna and salmon raw eggs and raw dairy. The raw dairy was purposefully added in to help repopulate the gut flora in a more natural way. I also added sauerkraut for more fermented gut support. The convergence of all these led to a rather scary 48 hours at one point. It was like I was living a viral infection I had twenty five years ago in reverse. I broke out in a rash that I would get when I had it and was given biaxin. My skin felt like it was burned for about forty eight hours and then it just suddenly cleared up. I had this very palpable sense of mental clarity at this time as well. I have added kefir in to the mix as it takes the place of the raw dairy when I am too broke to travel to get the raw dairy from an excellent farmer I have had the privilege of meeting. I have been consuming so much fat and so many eggs but was troubled recently by heart palpitations. I thought it was because of all the cholesterol and protein. I don't believe the lipid hypothesis put forward years ago by Ancel Keyes that has led to our grain centric fat avoiding diet but there was still a bit of doubt in the back of my mind with the thought that maybe I was not really doing the right thing after all. I dropped all fruit from my diet five days ago. I was eating bananas because I found myself cramping after workouts. I was eating pineapple for the bromelein. And I was eating a small serving of frozen cherries after dinner just because it was the closest thing to a treat for me any more. As soon as I dropped the fruit, the cramps stopped, the palpitations stopped and I feel much better. I realized that the gut discomfort might have been related to the same cramping I was experiencing with my skeletal muscles. Today I have eaten 14 raw eggs and I feel so good it is frightening. The fruit was really messing me up. I don't know what use any of this info will be to you but you just have to keep digging and asking and reading and researching. We are the ones who spend 24/7 in our personal research laboratories and we often don't get much hlep from outside consultants (doctors) who only have anecdotal clinical evidence to support or refute our very powerful personal observations. Trust your gut!

Even If I find that I never had celiac ( I am next to positive I do in spite of my observations of soy causing damage) I will never eat grains again. I am too healthy now and no longer miss my death foods.

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