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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?  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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gliadin_raider

Sensitive To Gluten And Milk, With Mostly Psychiatric Symptoms

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Hello.

About 6 weeks ago, I decided to try a gluten and milk/casein free diet to see if it would benefit me. I have a pretty sad mix of symptoms, starting with problems with sleep since I was approximately 6 weeks old, ADHD-like symptoms for my whole life, and a chronic depression for seven years that among other things has left me extremely emotionally numb as well as with no appetite or thirst, and constantly sluggish and confused. I have responded poorly to terribly to every medication I have tried, almost 15 of them, so I am pretty motivated to try out other treatments. My stomach has never really been much of a problem for me, except when I am sick or under heavy stress, which is why I have never suspected a food allergy/intolerance or anything like it.

After 2 weeks without milk and with a reduced amount of gluten (I had accidently been eating some without knowing) I seemed to have improved a little bit, so I tried to eat gluten on purpouse again to see how I would react. In about 10 minutes I started to feel confused, spacy and weird, and it got gradually worse during the day until I was depressive and unstable during the evening. So ok, that kinda confirmed my intolerance to gluten for me. The next day I felt good again, so I decided to try the milk too. I had a glass and didn't seem to react to it, so I took another half an hour later. Still nothing. I seemed fine until 2 hours later around 4 PM when I felt a little tired. I went to bed to take a little nap...and woke up 4 hours later. I hadn't been tired before the test and hadn't slept worse than usual, and I have never slept that much spontaneously before, so that was a bit odd. The next days I felt worse and worse and I suspected I was reacting to the milk in a more delayed way. Took about a week to recover to where I was before the test...

I will get a stomach biopsy this week, and will get my antibodies tested again after that. I had them tested once before for celiac but that didn't show anything, but maybe something will show up now, who knows. I am clearly intolerant to gluten and milk anyway, regardless of what the tests say.

Does anyone else here have had problems such as these, with no stomach problems and no obvious reaction to food until after having excluded them for some time and then tested? How long did it take for you to experience significant improvements in your symptoms?

Also, I have had several stomach problem since I started the diet. I was constipated for 4 days shortly after starting the diet, and have had daily minor pains in my stomach. And without going into any messy details, I have also had some problems with my feces which have _always_ been fine before. In fact, this is kinda weird as my stomach has mostly been fine through my whole life. I don't understand why it would get worse now. Some kind of withdrawal reaction?

Thankful for any replies.

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Hi Gliadin raider...

I present mostly with neurological symptoms like ataxia, vertigo and balance problems.

I was going to ask if you are still consuming gluten? You said you were going to be tested soon and you need to be consuming gluten for quite a few weeks prior to that test or you might have skewed/negative results.

Welcome to the board!

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Regarding your stomach issues:

You could be going through withdrawal. You could not be eating a balanced diet with enough fiber - its hard to change your eating habits quickly, but you'll get there. You could be uncovering other food issues now that you've eliminated two biggies - it happens all the time. It can just be a part of healing - most of us have wild rides the first 6 months.

Kamma is right - for the best test results you do need to continue to eat gluten. Since you've been tested before, and it was negative, you may not think its worthwhile to eat gluten again. Many people choose that option.

Probably more importantly, you need to get your vitamin levels checked. Iron (complete panel), d, b's, k. Celiacs and I think ncgi's are frequently low and it will help to raise them.

Best of luck to you. Congrats on figuring out your gluten and milk issues!

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You are not alone. I had bipolar illness from gluten. I had all the GI trouble as well and it took me a while to heal. It sounds like you were going pretty fast! :)

As other folks have said it would be good stay on gluten for a bit longer to get celiac testing. It's possible to have "silent" celiac with no GI symptoms.

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@Kamma

I am not consuming milk or gluten anymore. The testing I did was an endoscopy plus a biopsy, and I thought any damage as revealed by these tests would be too extensive to heal in just a few weeks to heal, unless I am mistaken? I have not tested for antibodies or anything like that yet. They didn't see anything on the endoscopy, but results on the biopsy will be back in 2 weeks (not sure what exactly they are testing it for though).

And thanks for the welcome.=)

@pricklypear1971

Whatever I have experienced the last weeks seems some kind of withdrawal. Most of the new issues seem to have calmed down by now though, but I still don't feel as good as I did for the first week.

6 months, gee... I have been mostly clean for about 1 month now, almost clean for 1 and a half. Seems like I still have some way to go then...

I don't think fiber was the issue really, I started to consume soy and pure oats (guaranteed gluten free by Sweden's food agency) early in the diet switch, so if anything I think I am getting more

fibers now than I did before. Anyway, whatever made my stomach upset, it seems gone now.

I have tested my vitamin and mineral levels several times before without anything low showing up, including several D vitamin tests.

What is a "complete panel" though? Does it differ from a normal test (which I suppose is what I did)?

@Skylark

Yeah, whatever I have seems to be "silent" in regards of GI symptoms. Stomach/GI has never been much of a problem for me, until I began the diet... The issues I had are gone to 90% now, with only some minor pains once or twice a day at most, no pains at all at best. How long did it take for you to improve in your bipolar-ish symptoms?

Considering how I now seem to react even stronger than before to gluten and milk/casein, I am not that eager to eat it again for any longer period. Perhaps a week at most of one or the other.. Is it that important to eat it for a prolonged period for the antibody tests (assuming the endoscopy/biopsy doesn't require this too, see above)? I will discuss this with my doctor and a specialist in this if we can find one, but I hope I won't need to eat either again for several weeks to get positive tests... I believe a diagnosis doesn't strictly require a positive test because they are not yet 100% as of today (for non-celiac sensitivity, anyway) -- does anyone have an idea? From what I have read a response to food challenge would be enough, even if no antibodies are found.

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All you need to eat for a Celiac panel is gluten. You could leave the milk out.

Different Celiac tests measure different things, but the iga antibodies drop quickly. More than two weeks without gluten, IMO, is too long without gluten for accurate testing.

You can still be NCGI without a positive endoscopy or blood work. The only way to accurately dx it currently is with a gluten-free trial.

And soy is a big problem for some people. Most say their symptoms from soy are as bad or worse than from gluten. Many of them neurological. If you don't feel improvement i'd experiment with dropping it.

And a complete panel for iron is one that measures iron stores, circulating levels, etc. Many doctors just order ferritin.

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Ah, yes, probably wouldn't have to eat both at a time.

How long would I have to eat gluten again for antibody levels to rise?

I think Iga was what we tested a year ago with negative result though.

I have considered dropping soy too, but I don't seem to have a problem with it. At least it doesn't seem to be interfering with the improvements I get

from my current diet. I may consider dropping it once the improvement from gluten and milk subsides, but those seem to have been the major ones for me.

Ok, I think I have just done a ferritin test then. Will consider a more extensive test after discussing with my doctor, thanks.

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They say to eat gluten for 3 months prior to testing. There's no good information about how long to add it back if you just dropped it. Sorry.

Were you iga deficient when they tested? Were your levels below normal? That could be one reason your tests are negative. Also, I think many tests are dependent on iga - so it wouldn't just invalidate one test. You'll want to research the tests and see.

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