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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dyslexia?
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30 posts in this topic

In the last year before I went on a gluten-free diet things got pretty bad. My head got so fuzzy that I couldn't concentrate, even if I wanted to and was trying. My cramping got worse. But stranger still, I began to get some kind of dyslexia. It wouldn't matter how many times a person confirmed with me that the room number I was looking for was 241, whether I'd seen the number, held it in my head and repeated it again and again for minutes. By the time I got to the floor I'd be looking for 421, or 124, or 120. So I was wondering, has anyone else experienced this? One of my relatives has diagnosed dyslexia but I'm not sure whether anyone has ever connected it to gluten, or if such a connection can be made. All I know is that I'd find myself having to look up phone numbers multiple times when I started to feel bad. Another part of my secret shame.

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I am dyslexic and I can tell you this is not dyslexia. You would not be forgetting numbers you would be getting them out of sequence. So if your room was 369, you may remember it as 396. Spelling would not be great. Dyslexics depend on memory.

Erin Brockovich has dyslexia she depended on her memory so she would not have to depend on writing about all those cases. She would have to write it down eventually but she would not have been able to write it down while she was speaking to the people.

Most dyslexics have better spatial orientation. If you look up info on dyslexia you might be surprised to find out the many famous scientist, actors, inventors, and politicians that were and are dyslexic. Dyslexia is not brain damage.

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Here are some quotes form famous dyslexics and dealing with thier dyslexia. I wonder where this world would be without them? (More quotes http://www.dys-add.com/backiss.html#famous)

I was, on the whole, considerably discouraged by my school days. It was not pleasant to feel oneself so completely outclassed and left behind at the beginning of the race.

--Winston Churchill

He told me that his teachers reported that . . . he was mentally slow, unsociable, and adrift forever in his foolish dreams.

--Hans Albert Einstein, on his father, Albert Einstein

I, myself, was always recognized . . . as the "slow one" in the family. It was quite true, and I knew it and accepted it. Writing and spelling were always terribly difficult for me. My letters were without originality. I was . . . an extraordinarily bad speller and have remained so until this day.

--Agatha Christie

My teachers say I'm addled . . . my father thought I was stupid, and I almost decided I must be a dunce.

--Thomas Edison

You should prefer a good scientist without literary abilities than a literate one without scientific skills.

--Leonardo da Vinci

I just barely got through school. The problem was a learning disability, at a time when there was nowhere to get help.

--Bruce Jenner, Olympic gold medalist

Young George . . . although he was bright and intelligent and bursting with energy, he was unable to read and write. Patton's wife corrected his spelling, his punctuation, and his grammar.

--Biographer Martin Blumenson on General George Patton

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What you describe with the numbers is exactly what was happening to me. Occasionally a number would drop out but not usually. I only bring it up because I've asked a number of local Celiacs and some mentioned that they get the same problems occasionally. I'm certainly not maligning dyslexic people. As I mentioned a few of them are my relatives. :huh:

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woops posted it twice..sorry

judy

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hi

I'm dyslexic and my son as well. If you have relatives with the dx, it's a possibility as it is hereditary. Brain fog from Fibro & celiac is bad enough but then throw in dyslexia and we have a full plate for sure.

hang in there ;)

Judy

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One of my relatives has diagnosed dyslexia but I'm not sure whether anyone has ever connected it to gluten, or if such a connection can be made. All I know is that I'd find myself having to look up phone numbers multiple times when I started to feel bad. Another part of my secret shame.

Hmmm... :rolleyes: I have never considered this possibility before. Gluten intolerance/allergy runs on my fathers side of the family, as does dyslexia. I have both celiac disease & a language processing disorder (dyslexia + the auditory equivalent). I have a genius IQ but have a low digit span (ability to remember numbers). I have increased this by useing my hands to hold some of the digits (I know sign language so can hold larger numbers on hands). I always sequence dominant hand first then non-dominant. This helps keep them in order. I have noticed I don't have nearly as much trouble since going gluten-free. In addition I have been able to come off all my seizure medicine, for idiopathic epilepsy, & have had no seizures. I had been diagnosed /w alzeimers because of my memory problems, but now w/o meds, my mental clarity/memory is pretty much back to normal.

Realize that many celiacs are deficient in B vitamins, which are necessary to brain function. You may wish to have some testing done to see what deficiencies you have or at least get a good gluten-free supplement. Don't give up, there is hope. :)

Wishing you the best,

Deb

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It IS possible that you have dyslexia but I taught students with dyslexia for two years and one of the most common misconceptions is that it's all about reversing numbers and letters, but it's much more complex than that (well- it can be).

The same thing (with numbers) started happening to me and I'm pretty sure it's brain fog. But if it's bothering you, it's definitely worth being evaluated.

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I have been able to come off all my seizure medicine, for idiopathic epilepsy, & have had no seizures.

How long did it take before you could do this?

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Hi!

I posted a while back about a similar issue with my daughter. She is in first grade now and starting to learn to read. Last year before she got very sick with Celiac (prior to diagnosis) she was starting all the early reading at a relatively "normal" rate. She was a very early talker and has above average communication skills. She is pretty good with fine motor skills and is very good at drawing and art.

Well, all of a sudden, she got very ill with undiagnosed celiac disease and by the time we got her diagnosed and on the diet we started to notice that she could no longer do things that she was able to do 6 months earlier. She could no longer identify the front of a book vs. the back of a book. She could not tell the difference between on vs. no or was vs. saw in writing. She was also asking us questions like: "what's the difference between push and pull". All of this seemed so odd to us - we kind of figured that it had to do with the trauma she'd been through (also diagnosed with tyoe 1 diabetes). Then at her 7 month check we found that her tTg was stll VERY high - - and her ability to learn was still pretty no existent. Then suddenly last month the kid's brain just came back to life. She is do incredibly vibrant and is ingesting books, no longer writing everything upside down and backward and is understanding difficult spacial concepts like chess.

I know that this is gluten related and her teacher who was tremendously skeptical a few months ago when I said that is what I suspected even called last week to tell us that he is totally amazed and now agrees that gluten could very well have been the culprit.

So, I think from what you are describing and what I have seen in her that there is a very strong relation!

I hope it straightens out for you soon.

Barb

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Hmmm... :rolleyes: I have never considered this possibility before. Gluten intolerance/allergy runs on my fathers side of the family, as does dyslexia. I have both celiac disease & a language processing disorder (dyslexia + the auditory equivalent). I have a genius IQ but have a low digit span (ability to remember numbers). I have increased this by useing my hands to hold some of the digits (I know sign language so can hold larger numbers on hands). I always sequence dominant hand first then non-dominant. This helps keep them in order. I have noticed I don't have nearly as much trouble since going gluten-free. In addition I have been able to come off all my seizure medicine, for idiopathic epilepsy, & have had no seizures. I had been diagnosed /w alzeimers because of my memory problems, but now w/o meds, my mental clarity/memory is pretty much back to normal.

Realize that many celiacs are deficient in B vitamins, which are necessary to brain function. You may wish to have some testing done to see what deficiencies you have or at least get a good gluten-free supplement. Don't give up, there is hope. :)

Wishing you the best,

Deb

Wow Deb- that's AWESOME!!!!!!!!!!!!! I think there is still so much that we and doctors don't know about the neuro effects of celiac.

Barb- that's so great about your daughter too! See- it really does make a difference!

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Hi!

I posted a while back about a similar issue with my daughter. She is in first grade now and starting to learn to read. Last year before she got very sick with Celiac (prior to diagnosis) she was starting all the early reading at a relatively "normal" rate. She was a very early talker and has above average communication skills. She is pretty good with fine motor skills and is very good at drawing and art.

Well, all of a sudden, she got very ill with undiagnosed celiac disease and by the time we got her diagnosed and on the diet we started to notice that she could no longer do things that she was able to do 6 months earlier. She could no longer identify the front of a book vs. the back of a book. She could not tell the difference between on vs. no or was vs. saw in writing. She was also asking us questions like: "what's the difference between push and pull". All of this seemed so odd to us - we kind of figured that it had to do with the trauma she'd been through (also diagnosed with tyoe 1 diabetes). Then at her 7 month check we found that her tTg was stll VERY high - - and her ability to learn was still pretty no existent. Then suddenly last month the kid's brain just came back to life. She is do incredibly vibrant and is ingesting books, no longer writing everything upside down and backward and is understanding difficult spacial concepts like chess.

I know that this is gluten related and her teacher who was tremendously skeptical a few months ago when I said that is what I suspected even called last week to tell us that he is totally amazed and now agrees that gluten could very well have been the culprit.

So, I think from what you are describing and what I have seen in her that there is a very strong relation!

I hope it straightens out for you soon.

Barb

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Hi!

I posted a while back about a similar issue with my daughter. She is in first grade now and starting to learn to read. Last year before she got very sick with Celiac (prior to diagnosis) she was starting all the early reading at a relatively "normal" rate. She was a very early talker and has above average communication skills. She is pretty good with fine motor skills and is very good at drawing and art.

Well, all of a sudden, she got very ill with undiagnosed celiac disease and by the time we got her diagnosed and on the diet we started to notice that she could no longer do things that she was able to do 6 months earlier. She could no longer identify the front of a book vs. the back of a book. She could not tell the difference between on vs. no or was vs. saw in writing. She was also asking us questions like: "what's the difference between push and pull". All of this seemed so odd to us - we kind of figured that it had to do with the trauma she'd been through (also diagnosed with tyoe 1 diabetes). Then at her 7 month check we found that her tTg was stll VERY high - - and her ability to learn was still pretty no existent. Then suddenly last month the kid's brain just came back to life. She is do incredibly vibrant and is ingesting books, no longer writing everything upside down and backward and is understanding difficult spacial concepts like chess.

I know that this is gluten related and her teacher who was tremendously skeptical a few months ago when I said that is what I suspected even called last week to tell us that he is totally amazed and now agrees that gluten could very well have been the culprit.

So, I think from what you are describing and what I have seen in her that there is a very strong relation!

I hope it straightens out for you soon.

Barb

Hi, still new to this board hope I post this right. I have been diagnosed since 1wk before xmas. My daughter is showing similar symptoms now of confusing her words, reading the word of as fo and was as saw. Things she new before are all a task to her at school, she is also in first grade. She has always had stomach problems and now that I have been confirmed with celiac my children are being tested. She is going tomorrow morning to have her blood panel drawn. My oldest is in college with all the stomach problems, he is in denial. He won't be tested until he comes homes from school. I do believe that celiac plays a part with your neuro psyche I was getting very confused for a while there and they blamed in on my hypoglycemia. Have been off gluten since last week in dec, no more allergy meds and can finally think straight and remember peoples names. I am hoping she doesn't have it. It is a very hard way of life to adjust, but if she does it is better to catch it now than to go through what we have been through. Thanks for listening. L

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I know what you mean about hoping that your kids don't have it . . . but the good news is that little kids are so much more resiliant than we stubborn old people. My daughter is so amazing how she deals with things. She doesn't feel sorry for herself and readily eats all of my experimental baking and says it is delicious. Today she said "don't worry mommy these bagels taste fine to me, I don't even remember what a real one tastes like".

And, really we have been able to make all of her favorite foods gluten free so that she is not missing out on anything. She gets it that the going to parties and social stuff should be about the people and not the food - a concept I will never truly understand. She is going to be healthier and stronger for it. As my mother says, it's an unfortunate way to build really good character.

As for the brain fog, it is interesting that most adults (at least on this site) seem to note at least some brain fog as a symptom yet getting people (mostly at school) to accept that a child would have that same symptom is difficult. My daughter said she actually felt like she had gluten (or peanut butter) in her head - yuck!

I wish the best for you and your family.

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I know what you mean about hoping that your kids don't have it . . . but the good news is that little kids are so much more resiliant than we stubborn old people. My daughter is so amazing how she deals with things. She doesn't feel sorry for herself and readily eats all of my experimental baking and says it is delicious. Today she said "don't worry mommy these bagels taste fine to me, I don't even remember what a real one tastes like".

And, really we have been able to make all of her favorite foods gluten free so that she is not missing out on anything. She gets it that the going to parties and social stuff should be about the people and not the food - a concept I will never truly understand. She is going to be healthier and stronger for it. As my mother says, it's an unfortunate way to build really good character.

As for the brain fog, it is interesting that most adults (at least on this site) seem to note at least some brain fog as a symptom yet getting people (mostly at school) to accept that a child would have that same symptom is difficult. My daughter said she actually felt like she had gluten (or peanut butter) in her head - yuck!

I wish the best for you and your family.

thank you, my daughter too is very happy eating my gluten free food and my baked goods. she loves the fact that i have to make everything now.

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thank you, my daughter too is very happy eating my gluten free food and my baked goods. she loves the fact that i have to make everything now.

I just noticed that you are from MA - as are we. We are in the Amherst area and there are lots of very good resources here (mainly shopping and restaurants). Where are you?

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Our son is 12.5 and is severely dyslexic and dysgraphic (profoundly gifted too - extremely high IQ) We ended up pulling him from school mid 3rd grade to homeschool.

Our son was fine until around age 5 then something completely changed him. He used to be a very calm child - for ex he cousl sit through a chruch service quietly looking at books before age 2 then around age 5 he began to crawl under pews and talk non-stop. He used to eat anything and then he got so picky he would only eat a few items fixed a specific way. Not that this is healthy but for example he would only eat a hamburger from Sonic - no where else.

We have been grain free / soy free / sugar free / since January 1, 2007 and we are seeing a few improvements - the one that sands out the most is his writing has improved a lot.

Blue-Skye

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Hi!

I posted a while back about a similar issue with my daughter. She is in first grade now and starting to learn to read. Last year before she got very sick with Celiac (prior to diagnosis) she was starting all the early reading at a relatively "normal" rate. She was a very early talker and has above average communication skills. She is pretty good with fine motor skills and is very good at drawing and art.

Well, all of a sudden, she got very ill with undiagnosed celiac disease and by the time we got her diagnosed and on the diet we started to notice that she could no longer do things that she was able to do 6 months earlier. She could no longer identify the front of a book vs. the back of a book. She could not tell the difference between on vs. no or was vs. saw in writing. She was also asking us questions like: "what's the difference between push and pull". All of this seemed so odd to us - we kind of figured that it had to do with the trauma she'd been through (also diagnosed with tyoe 1 diabetes). Then at her 7 month check we found that her tTg was stll VERY high - - and her ability to learn was still pretty no existent. Then suddenly last month the kid's brain just came back to life. She is do incredibly vibrant and is ingesting books, no longer writing everything upside down and backward and is understanding difficult spacial concepts like chess.

I know that this is gluten related and her teacher who was tremendously skeptical a few months ago when I said that is what I suspected even called last week to tell us that he is totally amazed and now agrees that gluten could very well have been the culprit.

So, I think from what you are describing and what I have seen in her that there is a very strong relation!

I hope it straightens out for you soon.

Barb

Hmm, my Hannah before Kindergarten was reading, high communication skills...now in 1st grade she is in the highest reading group level, she can read anything you put in front of her, but we just received her 2nd trimester progress report and she is having comprehension problems. At her school they have AR, which is they check a book out of the library, read it and then take a computer test on it when they are ready(Hannah did not know this. She thought she had to take the test the next week. We cleared that all up!). Hannah has been getting 70's and she needs 85! I was in shock b/c she has always done so well in school and loves it. So I started to blame celiac disease. She has taken to this dx with stride; she caught us buying the wrong food b/c she would read all the ingredients; she would go to a friends house and read the ingredients and tell the Mom if it was OK or not AND if she was not sure she would call us and ask us to please check for her. Then last month she was dx'd with Hashimoto's autoimmune thyroid disease and again, is taking it in stride; she has an alarm clock now and she sets it to 6am to take her levoxyl and goes back to sleep for an hour; she even informed her Dad and me that she only had 2 pills left before she runs out! So when I received this less than great progress report I just do not know what to do.

Could it be she is healing and going through something she cannot explain or maybe is afraid to tell us thinking she'll go to the doc and be dx'd with something else? (all her celiac disease labs were >100 and completely flattened villi. She had 2 ear infections under the age of 1 and then only saw the doc for physicals. Our only healthy child!)

Now my oldest, Madeine, 8 1/2y/o has DQ2 (me) and DQ8 (her Dada and he is Mexican)who I expected a progress report with several comments to improve on did great. She has mega colon, had SEVERE eczema up til 5y/o and now here and there, was told in Aug. she has osteopenia, is on the hyper side but pedi says not ADHD/ADD, also just got her 1st pair of glasses - BUT labs and biopsy are normal!! How can this be?????

Thanks for listening,

Jacqui

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In the last year before I went on a gluten-free diet things got pretty bad. My head got so fuzzy that I couldn't concentrate, even if I wanted to and was trying. My cramping got worse. But stranger still, I began to get some kind of dyslexia. It wouldn't matter how many times a person confirmed with me that the room number I was looking for was 241, whether I'd seen the number, held it in my head and repeated it again and again for minutes. By the time I got to the floor I'd be looking for 421, or 124, or 120. So I was wondering, has anyone else experienced this? One of my relatives has diagnosed dyslexia but I'm not sure whether anyone has ever connected it to gluten, or if such a connection can be made. All I know is that I'd find myself having to look up phone numbers multiple times when I started to feel bad. Another part of my secret shame.

I agree with a few other people - brain fog/cognitive impairment r/t celiac disease. I was just a great exzample I just went on and on about my daughter with celiac, whetras I meant to respond to the dyslexic ----I can't think of the word ----!@#$%^&*()I hate this thing!!! :blink:

My Celiac doc told me it can take 2 good years before you get your brain back. At least that has been the response by her patients. I am just shy of a year. 1 down and 1 to go...(hopefully less, but I also have neuro stuff too - neuro #4 here I come!!!!) :huh:

My daughter, Madeline with all the symptoms of celiac disease but negative by blood and biopsy is having a very difficult time with reading. We just had her eyes checked and she just needed a slight reading rx. I told the doc about having a hard time to get her to read and wonder if she is dyslexic, also she jsut wrote a shopping list for my husband and basic words were misspelled. She too was reading before Kindergarten and now for ~1yr. we have been having a very difficult time with school work - mostly reading.

Good Luck,

Jacqui

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Hi, yep diagnosed with dyslexia as a child and after going on a gluten free diet alot of my problems have gone i can now sit and read alot. before it was too tireing, i still cant spell very well , and my numbers always got mixed up,

but i think what you could be suffering from is just strieght out brrain fog, which is really hard on the memory , i often lose words and cant remember things as a result of the damage gluten crap has done to me.

good luck jen

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Yeah, the more I have the more it seems to be the brain fog. I was nearly diagnosed with dyslexia as a child, as I would see and transcribe letters very strangely, and as I mentioned my relatives have some dyslexia, but it seems to ebb and flow. The two year benchmark gives me something to hold on to, I guess. No one has ever given me anything like a timeline before. Thanks!

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I tend to write my number out of sequence like in 245 I will write the 4 first and 5 and then I will put down the 2 to complete the number. Never been diaganosed but I know that I have it.

donna

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Hi.

Gluten intolerance/allergy runs on my fathers side of the family, as does dyslexia. I have both celiac disease & a language processing disorder (dyslexia + the auditory equivalent). I have a genius IQ but have a low digit span (ability to remember numbers).

My daughter (11yo) is dyslexic, dysgraphic and possible Aspergers. She has a genius IQ too in spite of her zero digit span score and zero rote memory ability. She was diagnosed gluten intolerant six months ago and just last week was diagnosed dairy intolerant too. Since going gluten-free her learning has made a miraculous about-turn as has her behaviour. She still has foggy moments and her memory is not good, but overall her improvement is remarkable.

Before her gluten-free diet her learning had started to decline and her behaviour was a shocker! :angry:

Michele (new to posting on this board but a long time reader)

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I have been gluten free for four years and I too sometimes have the problem with numbers. I think that there is so much more about Coeliac disease and doctors are just not that interested in it. In the past I have been called a freak at work for taking my own food and on a faddy diet. It saddens me the lack of compassion that some people exhibit. "There for the grace of God go I" would be my philosophy.

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Last year for my DD was her toughest year as we really got into the heart of the Celiac symptoms. She too is absolutely brilliant and WAY beyond her peers socially and academically, but last year there were things that jumped out at me that it seemed like she should be able to do easily. I even considered ADD (not hyperactive) at one time because I just couldn't get that girl to focus.

She would read like the Dickens but sometimes didn't do well on comprehension tests although she could read aloud better than anyone else. She also struggled in math. It was a big year of times tables and division and fractions and she said it just looked like a jumbled mess.

She was dxd Celiac in May, just before school let out and there hasn't really been enough schoolwork to see how she is coping with it now, but I know there will be a change simply because she says her brain just feels better now that she is gluten-free. Speaking of Dickens, she read "Great Expecations" the first week of school and really seemed to "get it". :blink:

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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