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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.

gluten-free Diet Trial. Results May Confirm Self-Diagnosis?
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3 posts in this topic

Hi everyone!

I decided to start a gluten-free trial diet after doing some research online one day. I stumbled across this checklist from the Dr. Oz show:

Digestive Symptoms

  • Frequent bloating or gas
  • Diagnosed with IBS or acid reflux
  • Daily diarrhea or chronic constipation

Neurologic & Skeletal Symptoms

  • Migraine or headaches
  • Joint pains or aches
  • Brain fog

Hormonal & Immune Symptoms

  • Depression or anxiety
  • Ongoing fatigue
  • Chronic eczema or acne

And sure enough, I have every single one of these and have been treated by a doc for most of them. Long story short, I decided to do a gluten-free trial for a few weeks to see how I felt. I'm not sure if my results from it are common for those who have Celiac/GI and just wanted some feedback from people who have experienced it for themselves.

It's been 2 1/2 weeks since I started. My diet has included more whole-foods instead of the overly processed gluten-free food. (I've been eating brown rice, salmon, green veggies, Greek yogurt, fresh fruit, etc.)

- Starting from day 3 I noticed that I had considerable amounts of energy and my stomach felt strangely "calm".

- I've struggled with depression and anxiety and no medication ever worked. Since starting, both of those things are gone and I feel much more upbeat and happy. My ADHD has also improved.

- I've always been underweight and have struggled to put on weight, but I've gained around 5 pounds since I started the diet even though I've been eating the same amount that I normally would.

- The tightness in my back and joints that I'd feel at the end of the day is gone.

- My skin is incredibly softer and much less itchy and dry than it used to be. A huge improvement. My complexion looks clearer and smoother.

- My appetite has increased. I used to have to force myself to eat but now I'm actually hungry and enjoy food more.

- I no longer feel like I ate a bunch of rocks every time I have a meal.

- My chronic sinus congestion and post-nasal drip has almost completely gone away.

- No more having classic IBS attacks after I eat something where I need to run to the bathroom or have pains.

- Not a single headache or migraine. (I used to have them at least 1-2 times a week.)

No one in my family has been diagnosed, but no one has been tested. However, my mother and my sister both suffer from suspicious symptoms that may indicate that they may have it. I haven't been tested just because I don't have the money.

Did anyone else experience these improvements when they went gluten-free? I'm guessing I have some intolerance or celiac disease after this, but I'd love to hear from people who've walked in these shoes before me.

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It sounds as if you are on the correct path. B) Just be aware that if you truly go and stay gluten free for a decent period of time, your body stops making antibodies to gluten if you are celiac, and you will not test out as such. However, since there isn't a test for gluten intolerance other than to see how one responds to a gluten free diet change, you may be able to just call it gluten intolerance, and be categorized as such, if you are not worried about the technical diagnosis (a few medical people may try to be dismissive, but that is improving all the time as knowledge becomes more widespread and more and more people show up with symptoms... then there are those of us who didn't test out anyway, but obviously had a lot of physical issues, many of which resolved once we changed our diet).

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sounds like you're doing great. my 3 kids have all gone gluten-free without testing and are thriving. my 26 yr old daughter's main symptom was boils in her groin - like since she was 3 they've been there. we'd taken her to several docs, thought she might be allergic to the elastic in her underwear because they formed under the elastic. but nothing helped. she took Accutane for 4 months last spring/summer before we knew about this. Now, finally, after being gluten-free for 2 months they have begun to clear up.

my son, 24, had IBS-like symptoms for about 9 years, but not all the time. he could go for months being fine. now, though, he says his stomach feels calm also and when he's accidentally gotten some gluten, it's completely made him miserable and he's felt sick. he's had a lot of anxiety and anxiety attacks over the past 8 or so years, and took antidepressants for about a year as well. he has terrible insomnia and trouble going to sleep, which i've read is related to malnutrition - specifically that you are deficient in tryptophans. he takes 5HTP to help with that, and it really does help him sleep better.

interestingly, i took it for about 2 years and it put me right out and i slept all night like a baby. but now, i guess i've caught up with my tryptophan deficiency because it no longer works for me. very curious.

my 20 yr old daughter has had increasing food allergies for the past 2 years, narrowing her diet down farther and farther. finally the university health center gave her an epi-pen it got so bad. she also had anxiety attacks. she also was having bizarre thoughts that were really worrying me. after 2 months that has all cleared up. it's amazing.

mine wasn't so dramatic, i suspect because my crisis happened when i was in college and in my young adult years. i just ate less and less variety of foods and still had problems. although i never had trouble eating gluten food - or so i thought. i ate and ran for the bathroom most of the time. i had terrible cystic acne from about 17-23, but i had acne of some sort from age 9 til now. my skin is definitely my weak point, along with my stomach.

i found digestive enzymes about 15ish years ago, started taking those with every meal and taking lactase enzymes and probiotics, and my health really returned. even so, by the time i'd read everything i could find about it online, i knew i had it. my mom and brother too. so i got tested and i do have the genes, and i do have antibodies, although i would say i felt great in spite of it. i'm being committed to no gluten anyway, because i don't want the damage from those antibodies or the other auto-immune diseases if i can avoid them. my mom's side of the family has diabetes in almost every one, and nobody is overweight. there's a very strong connection between diabetes and celiac disease.

for your family's sake, you might pass on some info to read. i thought the best info is on this site (look in the section off the home page that lists diseases that are related to celiac), the University of Chicago's Celiac Center site, and their e-book that is at the bottom right of their home page. Between those, you'll get lots of good info on why it's imperative to go gluten-free if you have the antibodies, or the symptoms, because untreated leads to bad things. Read other people's posts too, for other information.

i'm not sure there is any advantage to getting the official diagnosis. maybe there is, but my kids aren't going to do it. they're just not eating gluten. you're in charge of what goes in your mouth, after all! you just have to be assertive with any people who want to tell you that one bite won't hurt you, or you don't really have it, or whatever. if you feel better without gluten, there is your answer.

good luck!

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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