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Evangeline

Any Celiacs Who Decided To Be Completely Grain-Free?

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I am wondering why many Celiacs are not healing on a STRICT gluten-free diet. I read medical studies that shows many biopsies show the intestines still remained inflamed 15 years later. Obviously, something is wrong with this gluten-free diet if many people aren't healing.

I just read a blog of someone with Crone's Disease who has basically completely healed Crone's Disease by eliminating all grains completely and making a few other minor changes to his diet.

I am wondering if there are any Celiacs who have eliminated all grain completely? Are you out there? Did you find your other food allergies disappeared? I have become "allergic" to almost all foods - you name it, I can't eat it. Something is causing the intestinal permeability.

Is there anyone out there who does not eat grains and how improved their leaky gut syndrome?

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There are threads here about the Specific Carbohydrate Diet (SBC)which essentially eliminates all grains.

I am trying to eliminate all grains but once in a while I eat a bit of rice, lentils, or corn chips. And every single time I do it...I vow to eliminate all grains. I did do it for 5 years once long ago before I ever knew about gluten. I realized after a year that nothing was bothering me mentally or physically and I was healthier than I had ever been in my life. I am trying to get back there. I thought it was the carbs that got me then, but actually it was gluten. Now that gluten is totally out, I know I would feel better totally grain free.

I know there are people here who are totally grain free.

I hope I will be too. It is just really really hard to do. I'm working on my self-discipline.

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I have done so by adhering to a paleo diet. It makes gluten free very easy for me. No grains. I still have a ways to go with healing but have never felt better.. relatively speaking.

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I'm relatively grain free. I have some leftover rice products that I'm trying to space out, and I'm not sure I'll ever be able to totally give up chips and margaritas, but I've cut way back on them. When I eat no grains I can sleep all the way through the night (for the first time in my life, that I can remember). It's pretty awesome.

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oh i know- its very difficult.. i am STILL eating things that mess me up.. hard to give up enjoying my food.

years ago- i was completely grain free & sugar free- but havent gotten back there yet. i am ok with moderate amounts of rice & gluten-free oat products. i can also do quinoa & some millet. all the other grains mess me up- especially corn flour products. i try to avoid them, but i DO have gluten-free bread in the fridge (with potato & tapioca starch, etc).

its hard to give it all up... on top of the gluten-> i avoid most legumes, beans, corn, and excess fructose because of the pain. and soy because of the thyroid.

dairy is a huge addiction for me- and its hard to give up- because it gives me so much pleasure- and maybe 40% of the time- i can eat it and feel no consequence-> but other times it's pretty painful-> and im afraid that secondary glutenization might very well be real.

i know i need to get more strict- cause i still sometimes have some pain, and those horizontal cracks on my fingerprints have not improved- and they should as your gut is healing.

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I am trying to go grain-free. The thought of eliminating all grains including rice is not daunting to me because I know how bad all traces of gluten affect a Celiac's body -- the brain damage, the intestinal damage, the organ damage.

The daunting part is trying to get ALL GRAINS OUT OF PRODUCTS LIKE SALT AND VITAMINS, LOL.

I just noticed my "all natural" sea salt is "iodized" which means they probably added dextrose (corn) to stabilize the iodine. So I need to call that company.

And of course all vitamins and supplements will use traces of rice and corn and not mention it on the label.

And of course all animal products are out because they are fed diets of corn and soy (which causes them to be sick too since nature didn't intend that!).

I removed the last grain from my diet a few days ago and already the inflammation is down. I hope it stays this way.

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oh i know- its very difficult.. i am STILL eating things that mess me up.. hard to give up enjoying my food.

years ago- i was completely grain free & sugar free- but havent gotten back there yet. i am ok with moderate amounts of rice & gluten-free oat products. i can also do quinoa & some millet. all the other grains mess me up- especially corn flour products. i try to avoid them, but i DO have gluten-free bread in the fridge (with potato & tapioca starch, etc).

its hard to give it all up... on top of the gluten-> i avoid most legumes, beans, corn, and excess fructose because of the pain. and soy because of the thyroid.

dairy is a huge addiction for me- and its hard to give up- because it gives me so much pleasure- and maybe 40% of the time- i can eat it and feel no consequence-> but other times it's pretty painful-> and im afraid that secondary glutenization might very well be real.

i know i need to get more strict- cause i still sometimes have some pain, and those horizontal cracks on my fingerprints have not improved- and they should as your gut is healing.

Do you mean cracks in the finger prints or the nails? My nails have ridges that aren't going away, but I am getting my moons back (in the nail bed) which is supposed to be good.

After a year gluten/dairy/corn free I know I my next step is the SCD. I am back to having some fatigue and I have some inflammation that just isn't going away. It's just so much to give up after my family has already made a huge paradigm shift. I have a book about the SCD. I just need to read it and give it a try. I'm hoping that it will be easier to manage in the summer. It is encouraging that other people here have had such great success on it.

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I am trying to go grain-free. The thought of eliminating all grains including rice is not daunting to me because I know how bad all traces of gluten affect a Celiac's body -- the brain damage, the intestinal damage, the organ damage.

The daunting part is trying to get ALL GRAINS OUT OF PRODUCTS LIKE SALT AND VITAMINS, LOL.

I just noticed my "all natural" sea salt is "iodized" which means they probably added dextrose (corn) to stabilize the iodine. So I need to call that company.

And of course all vitamins and supplements will use traces of rice and corn and not mention it on the label.

And of course all animal products are out because they are fed diets of corn and soy (which causes them to be sick too since nature didn't intend that!).

I removed the last grain from my diet a few days ago and already the inflammation is down. I hope it stays this way.

omg!!!! exactly how frustrated i feel with all the corn crap they put in EVERYTHING and soy & soy lecithin thats in EVERYTHING... it's like the government and their subsidies are poisoning us and we cant do s about it :(

AND YES- all the grains they feed the animals :( sucks cause i eat a more paleo diet... i try to get grass fed beef & dairy products- but its not always possible. and im sure all the eggs i get are from chickens fed grains. but honestly- im not as concerned with the grains making it into the meat- BUT- it could most definitely be in the dairy- as gluten has been found in breast milk. AND i read this the other day:

http://www.nps.gov/archive/libo/white_snakeroot3.htm

so, obviously what they eat COULD possibly pass into their milk .... sucks cause i have not conquered my dairy addiction

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I have two friends who are Celiac and corn intolerant (they are problably GRAIN intolerant and don't know it yet!). They cannot eat EGGS that come from hens that are fed corn because all their gluten-like symtpoms return and their inflammation becomes VERY painful within hours. One of them keeps their own hens and feeds them their daily grain-free leftovers.

I have found this Corn Allergy List very helpful: http://www.cornallergens.com/list/corn-allergen-list.php

I did not realize corn was in over 1000 items.

Next I shall try to find a "Rice Allergy List."

Also, I switched all my cats to "grain-free cat food" (it is turkey and peas now) because a Celiac veterinarian noticed that when he put his animal patients on grain-free diets, their seizures went away and their health problems completely improved. Researchers have now discovered the "Celiac" Irish Setter and now believe many, many other animals are intolerant to grains. When we put one of our cat on a grain-free diet, her very grouchy personality has improved and she now lets us hold her.

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I have been browsing over information on the grain-free diet by Dr. Osmonde and Elaine Gottschall. Elaine Gottschall treated Celiacs, ulcerative collitis, Crone's Disease and other intestinal diseases with a grain-free diet. Interestingly, she was unhappy that the medical community started saying that Celiacs only needed to avoid wheat, barley and rye. After that, she began treating hundreds of Celiacs who were not thriving on the "modern gluten-free diet" with her grain-free diet. Now, it appears Dr. Osmonde is following a similar path by creating the Gluten Free Society with a "truly" gluten-free diet and advises no grains, only grass-fed animal products and supplements which are VERY carefully selected.

I found this video of Elaine Gottschall's lecture very interesting. Part Two shows slides of a colon with a mucus overlay because of a potato/soy intolerance:

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oh i know- its very difficult.. i am STILL eating things that mess me up.. hard to give up enjoying my food.

years ago- i was completely grain free & sugar free- but havent gotten back there yet. i am ok with moderate amounts of rice & gluten-free oat products. i can also do quinoa & some millet. all the other grains mess me up- especially corn flour products. i try to avoid them, but i DO have gluten-free bread in the fridge (with potato & tapioca starch, etc).

its hard to give it all up... on top of the gluten-> i avoid most legumes, beans, corn, and excess fructose because of the pain. and soy because of the thyroid.

dairy is a huge addiction for me- and its hard to give up- because it gives me so much pleasure- and maybe 40% of the time- i can eat it and feel no consequence-> but other times it's pretty painful-> and im afraid that secondary glutenization might very well be real.i know i need to get more strict- cause i still sometimes have some pain, and those horizontal cracks on my fingerprints have not improved- and they should as your gut is healing.

Certain forms of dairy have more casein than others (as well as lactose I believe) and that could be why you are more sensitive with certain dairy items. I tested pretty high for cottage cheese, mozzarella and parmesean were a little lower and casein was even lower than that. I just aviod all dairy now.

I am seriously going to try out the paleo diet. I have barely eaten anything the last few days due to the stress of my phlebotomy class and I felt fine. Today I ate a bowl of gluten free pasta and about an hour later my heart started having abnormal beats again. I just don't think my body likes any kind of carbs.

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AND YES- all the grains they feed the animals :( sucks cause i eat a more paleo diet... i try to get grass fed beef & dairy products- but its not always possible. and im sure all the eggs i get are from chickens fed grains. but honestly- im not as concerned with the grains making it into the meat- BUT- it could most definitely be in the dairy- as gluten has been found in breast milk.

Our supermarkets have just started touting the wonders of corn-fed chicken!!! as if it were some sort of delectable delicacy. :lol: Gads, there's enough contamination in chickens already without adding corn to the mix. I worry about the lectins in the dairy, because cows' stomachs were not designed to digest grains and that is why I HAVE to eat grass-fed beef - the lectins can be found in the meat (and presumably in the milk too) :unsure: Y'all are going to laugh when I tell you this, but I bring my powdered yogurt mix for homemade yogurt with me when I come over to U.S., enough to last my entire visit, because I am afraid (because of the amount of dairy I eat) of having reactions to dairy and having to eliminate that too!!! And I eat goat and sheep cheeses a lot :D And just altogether try to stay away from dairy lectins as much as possible.

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Our supermarkets have just started touting the wonders of corn-fed chicken!!! as if it were some sort of delectable delicacy.

:o :o

The chicken instructions tell you to minimize corn since it isn't very good for them.

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I have been completely grain free in the past. I was grain free for about 3 years....I was and am still developing more food intolerances though. I use some buckwheat flour now (if you consider buckwheat a grain. Some people consider it more of a seed).

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I have been grain free (and LOTS of other "frees") for 8 months now, gluten free for 14 months... if anything my sensitivities have gotten WORSE. I was so hopeful that things would improve for me but they just haven't. If I stick to my 7 safe unprocessed foods I feel pretty awesome. But if I make [grain free] cookies with my kids, what I inhale makes me sick. If I walk through a bakery I get sick. If I trial a new food (in the past 3 months, I've only had the guts (ha!) to trial strawberries and asparagus), I get sick. I pray that maybe I just need more time to heal. We'll see!

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Certain forms of dairy have more casein than others (as well as lactose I believe) and that could be why you are more sensitive with certain dairy items. I tested pretty high for cottage cheese, mozzarella and parmesean were a little lower and casein was even lower than that. I just aviod all dairy now.

I am seriously going to try out the paleo diet. I have barely eaten anything the last few days due to the stress of my phlebotomy class and I felt fine. Today I ate a bowl of gluten free pasta and about an hour later my heart started having abnormal beats again. I just don't think my body likes any kind of carbs.

i believe u yes- with the different types of dairy- i do know there are certain cheeses that im completely fine with, etc.. when i said "40% of the time"- i meant with the same product- like 1/2 cup of whole milk in my mocha- 1/2 the time- it doesnt do a thing to me, other times- if i take a lactaid i'll be ok, and then other times- im in so much pain, im totally home ridden for the night laying on a heating pad and pillow under my stomach- and if i still have to shower- it's excruciating to stand up- and then i start the interogation in my head: "is it the lactose? or the casein?? or was it the fructose? did i overdo the fructose? or CRAP- was it gluten from the grains the cow was consuming????" oy vey, it drives me nuts- i guess i could just NOT consume it huh? :huh:

also- u said the gluten-free pasta made your heart race?? was it corn pasta? corn products make my heart race and my blood pressure go up- similar to gluten but not as bad

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Our supermarkets have just started touting the wonders of corn-fed chicken!!! as if it were some sort of delectable delicacy. :lol: Gads, there's enough contamination in chickens already without adding corn to the mix. I worry about the lectins in the dairy, because cows' stomachs were not designed to digest grains and that is why I HAVE to eat grass-fed beef - the lectins can be found in the meat (and presumably in the milk too) :unsure: Y'all are going to laugh when I tell you this, but I bring my powdered yogurt mix for homemade yogurt with me when I come over to U.S., enough to last my entire visit, because I am afraid (because of the amount of dairy I eat) of having reactions to dairy and having to eliminate that too!!! And I eat goat and sheep cheeses a lot :D And just altogether try to stay away from dairy lectins as much as possible.

shroom- you're not in america??? how funny- i never even thought that you were overseas... or r u in canada?? hhmm..

no, i do not laugh at u at all- in fact i daydream about bringing in my own goat milk to starbucks - but afraid of everyone thinking im a freak or telling me it's illegal or something.

and i LIVE on goat milk yogurt!!!!! love love love it- get it at whole foods- vanilla is my favorite :P

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I have been grain free (and LOTS of other "frees") for 8 months now, gluten free for 14 months... if anything my sensitivities have gotten WORSE. I was so hopeful that things would improve for me but they just haven't. If I stick to my 7 safe unprocessed foods I feel pretty awesome. But if I make [grain free] cookies with my kids, what I inhale makes me sick. If I walk through a bakery I get sick. If I trial a new food (in the past 3 months, I've only had the guts (ha!) to trial strawberries and asparagus), I get sick. I pray that maybe I just need more time to heal. We'll see!

You get sick when you make grain-free cookies?

You get sick when you inhale the odor of gluten? This is interesting. I just read that a study found that breathing in gluten affected some Celiacs. This will make me more cutious.

Are you eating soy? If you are, is it GM soy?

Are you eating legumes?

Sorry for all the quesitons, I'm trying to figure out what could cause the intestinal permeability and all your food sensitivities?

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If I stick to my 7 safe unprocessed foods I feel pretty awesome.

What can you eat? I'm having such a hard time figuring out what I can and cannot eat.

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Thats basically how I am now.

I have so far found that I can't eat corn or rice. I can't eat nightshades (potatoes, tomatoes, egg plant, peppers). I cannot eat many greens such as: broccoli, kale, spinach, carrots, cauliflower, bok choy, brussel sprouts. I fall asleep after eating them. I cannot eat legumes.

So its basically ice berg lettuce, squash, nuts (but not seeds!), olive oil, basamic vinegar, romaine lettuce, salt and pepper and some fruit. I am testing sweet potatoes tonight!

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I have been grain free (and LOTS of other "frees") for 8 months now, gluten free for 14 months... if anything my sensitivities have gotten WORSE. I was so hopeful that things would improve for me but they just haven't. If I stick to my 7 safe unprocessed foods I feel pretty awesome. But if I make [grain free] cookies with my kids, what I inhale makes me sick. If I walk through a bakery I get sick. If I trial a new food (in the past 3 months, I've only had the guts (ha!) to trial strawberries and asparagus), I get sick. I pray that maybe I just need more time to heal. We'll see!

If you are grain free and still getting sick, are you also avoiding meat and animal products from animals fed grains? Vitamins and supplements are also grain free? I have friends who are corn intolerant and cannot eat the EGGS that comes from hens fed corn. They have a severe reaction.

I can't find "100% grass fed" anywhere. When I call "grass-fed, organic" companies, they explain that the animals are allowed a diet of 20% corn and soy.

So how is everyone doing grain-free while using animal products?

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I am testing sweet potatoes tonight!

Good luck with the sweet potato. I had one yesterday and have to figure out if that is what I reacted to. The dreaded D was back today. I'll have to challenge sweet potatoes again but don't think I'm going to feel up to that any time soon.

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Good luck with the sweet potato. I had one yesterday and have to figure out if that is what I reacted to. The dreaded D was back today. I'll have to challenge sweet potatoes again but don't think I'm going to feel up to that any time soon.

I had that two nights ago and I think it was on apples. :(

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I have been grain free without resolution of my issues and just got and read Elaine Gottschall's "Breaking the Vicious Cycle" Intestinal Health through Diet" book on the specific carbohydrate diet. I am sorry I didn't get this some time ago. Fast read and interesting as well. I think it may be a better starting point than a paleo diet.

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If you are grain free and still getting sick, are you also avoiding meat and animal products from animals fed grains? Vitamins and supplements are also grain free? I have friends who are corn intolerant and cannot eat the EGGS that comes from hens fed corn. They have a severe reaction.

I can't find "100% grass fed" anywhere. When I call "grass-fed, organic" companies, they explain that the animals are allowed a diet of 20% corn and soy.

So how is everyone doing grain-free while using animal products?

I'm sure the meat I eat has been fed grains. We go through a LOT of meat in our household and buy a 1/2 cow at a time - I can't imagine the cost if we needed strictly grass-fed! :o My vitamins and supplements are all safe (I spent over 18 hours seeking out safe varieties of everything I use - talk about wanting to rip my own hair out!). As long as I stick to my list of safe foods - chicken, beef, sweet potatoes, carrots, apples, blueberries, olives/oil, and a handful of spices - I feel excellent. So I truly don't suspect that grains are getting in through my animal products. When I make meringue cookies w/my kids, I suspect it's the inhaled cocoa powder that's getting me. And I definitely react to inhaled gluten. As well as any gluten that gets on my skin - instant angry red itchy rash. I hope you're quickly able to get to a list of foods you can rely upon. That's almost the worst part - not knowing for sure WHAT you can eat that WON'T make you sick. I complain a lot (okay, a really lot) about how limited my diet is, but the fact that I have a safe list is worth so much to my sanity. Hang in there!

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    • Marathoner/Cyclist/UltraRunner 36 year old female  I have had neurological symptoms for many years that have slowly gotten worse as I've gotten older of, what I believe to be, Gluten Intolerance.  Namely: anxiety and depression (I never sought an official diagnosis because I didn't want to be medicated), ADHD/bad short-term memory (My mom said that I've always "just been like that"), brain fog and extreme fatigue/naps ("It's because you're getting older, haha drink more caffeine, quit running so much," etc), occasional migraines ("It's hereditary"), and, more recently, joint pain ("You need to quit running and get more rest"). I have a tip-top diet eating LOTS of fresh organic green vegetables, fruits, whole grains, eggs, quinoa, seafood, chicken, limited dairy, and I take the right supplements for my activity level. I have never displayed irritable bowel with gluten but I did have more unstable bathroom habits while on training runs. After being so frustrated with my fading energy levels and brain fog, I did tons of Googling of my symptoms that apparently only *I* thought were concerning. I began to suspect a Vitamin B12 deficiency was to blame for my lethargy. I began to supplement with sublingual B12 and it seemed to help but I was super-confused as to why I wasn't absorbing B12 from my diet which was plentiful in B12.  After a bout with the flu this last winter, I suddenly developed a sort of whole-body rash that would develop after each and every training run. It was a strange rash because it happened right after finishing a run, and broke out primarily on my elbows, knees, buttocks, abdomen, and sometimes my neck and face. The bumps were more like HIVES, raised, sometimes as wide as an inch, and itchy. My airway was never affected and so I kind of tolerated it for awhile, thinking it was a strange phase.  When it didn't go away, I started Googling again. I came up with something called "food-dependant, exercise induced anaphylaxis." One of the triggers of FDEIA was wheat. And when I looked more into the multiple symptoms of gluten intolerance, a big fat lightbulb clicked on in my head.  All of the troublesome symptoms that I was blaming on age and running and heredity matched up pretty darn well with WHEAT. I immediately experimented by cutting wheat out of my diet completely and within 1-2 weeks, my annoying symptoms were gone, I felt rested, clearer minded, with a brighter mood. The post-exercise rash went away. I began thinking about trying to get an official diagnosis (am I gluten sensetive? intolerant? allergic? celiac?). When I learned that I would have to go back on wheat for awhile to get a diagnosis I decided to just live wheat-free without the diagnosis, however, part of me really wants to know! Is it possible to be both allergic to (post-exercise hives) and intolerant to (brain fog, adhd, fatigue, loose bowels, joint pain, anxiety) wheat? Thanks for any insight!!~~~~~~~~ For the record, I ate pizza about a week ago just because.....and while nothing significant happened after I ate, I broke out in a horrible hivey rash the very next time I went on a run. Bodies are strange!
    • Firstly,  I was diagnosed with Hypothyroidism 18 months ago.. (TSH 39) Synthroid 100 to start with and by this April was increased intermittantly to 212mcg...  My Levels seemed to decrease initially, but then began to rise again (still at 19.42),,  Dr. referred me to a specialist (saw in May) who suspected Malabsorption to possibly the "brand" of Med and switched to Eltroxin.  My other symptoms include -Weigh GAIN, High Blood Pressure (2 meds) Extremly dry skin especially on instep of feet and all over general dryness. Ocular migranes.  Extreme fatigue and fog brain.  I have tested positive intermittantly with microscopic blood in the urine, and had a internal bladder scope showing no problems....   So, being so frustrated with the cycle weight gain causes increase BP, tiredness etc.  I did a ton of research and Started a KETO diet.. My followup (after labs) with the specialist was 3 days ago and she advised that she had labs done on Thyroid - still at 19.26 - but advised that I am positive (2 tests)  for "Silent Celiac" and I am not absorbing my meds. I told her I had gone Keto and hadn't had any grains etc for 4 weeks and I still feel the same..     So where do I go from here?
    • Hey all, I wanted to see if anyone else was in the same boat. I saw a GI for the first time 3 weeks ago after my former (pediatric) GI recommended me to him. I was diagnosed with GERD (chronic acid reflux) as a kid, and she wanted me to continue treatment as an adult. My new GI talked to me about my symptoms and my diagnosis, and told me that he thought my GERD diagnosis was wrong. He wanted me to do some bloodwork, and stop taking my anti-reflux meds before an endoscopy, just to make sure nothing else was going on. When we got my serologies back, the only abnormal thing was that my tTG-IGA tested positive for Celiac (my levels were 14, with < 3 being negative). We did the endoscopy a week later, and that was completely negative. In fact, he told me that my intestines looked like textbook-worthy, healthy intestines. Because my results didn't match, he ordered genetic tests for HLA DQ2 and DQ8. I tested positive for both, including 2 sub genes for DQ2. Because of the genetic tests and the blood tests, he officially diagnosed me with Celiac. I know that Celiac typically isn't diagnosed without a positive biopsy, so I wanted to see if anyone else had had a similar experience. I'm already feeling better after being gluten-free for less than a week, so I don't think my GI is wrong, I just think this is a pretty strange experience.
    • Congratulations!  That is such great news!  I'm sure that you feel great getting that result and knowing your hard work has paid off. 😀
    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
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