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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.

Do I Have Celiac? Everything Points Me Here..
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4 posts in this topic

Im lost..

1. Symptoms

2. Things I noticed that may or may not matter

1. Symptoms

- Drowsiness

- Brain fog

- Fatigue

- Social anxiety (a bit)

- Somewhat bad social skills (but normal social life)

- Dont feel emotions as intense as others (but do feel of course)

- Been told I look somewhat melancholic

- Analyse everything/deep thinker/cant turn of thinking many times

2. Things I noticed that may or may not matter

* When I had a lot of pizza as young, the skin in my face would turn bad. It would itch a bit and I could get some bigger than usual pimples.

* Lactose intolerant.

* When i had antibiotics in the last couple of years i almost felt a bit less stressed for a few days. Bit more relaxed. But then back to normal. Even when I wasnt sick and just had some antibiotics to be safe.

* The cant-turn-of-thinking has gotten worse the last couple of years. 30 years old today. Good shape, gym 5 times a week.

* Have vitiligo, autoimmune disease.

* Very stressful life before.

*Always felt easily stressed out. At least after 17 years old.

* React and feel very strong after taking iron supplements. Tested and got back normal iron levels. React very good to oysters as well. Mental clarity after in less than hour hours. Ate zinc supplements and felt nothing.

* No stressful job for over two years. But still I feel mentally exhausted after for example a cross-fit session (normal gym is fine). It feels good afterwards, but I feel mentally overwhelmed even having a normal discussion. Bodywize/muscle wize i could do another session (with an effort of course).

* Bought a book called practical paleo and followed a meal plan for auto-immune disorders that took out all grains, nightshades, nuts, dairy and maybe something else. My god - within a few days the clarity of my brain was so crisp it shocked me. Social skills went up in some strange way. I didnt get tense when talking to strangers. But I lost 7 kilos in 2 weeks and I was starting to look sick (dont want to loose weight). Switched back to eating rice, soda, nightshades and dairy but no wheat. And i most likely got small amounts of gluten in me when eating out. The effect wore of. But still a bit better when it came to energy levels.

* During this the paleo test I noticed that when i had 5-7 bananas (in an effort to keep my weight) my stomach got bloated and I passed alot of gas.

* Same with sweet potatoes. Bloated as hell even on a small amount.

* Probiotics (biokult brand) seems to relax me in some way. Helps a lot when I had some raw salmon and felt a bit bad. The pills fixed it within 10 min. Happened several times. Used the probiotics about ten times.

* On the paleo test I got so tired from the lack of carbs. Not a brain fog fatigue, but a muscle fatigue.

* On the paleo diet I drank a can of coconut milk (not water) before bed time once to battle the weight loss. Fever for three days! I felt the milk in my stomach and knew straight away it was a bad idea. Always enjoyed cocounut in food before. Tried a small bit of it afterwards and cant really say how i reacted. Too afraid to try more.

* On the paleo, my skin got so fucking good i was shaking my head in disbelief. Im 30 and have no dimples. But the skin got really smooth, soft and a bit "fatty" in a good way. Almost glowing. I stopped using a moisturizer two days after the paleo diet.

* Cholesterol high. Tested.

* Blood pressure somewhat high, 130/??. Pulse always been a bit high, 80 resting pulse.

* Did the adrenal blood pressure test at home. My blood pressure drops 20 points from sitting to standing. Apparently it should increase. And a drop is suppose to indicate adrenal burn out. Which I feel is a pretty safe bet. Its not my work (got burned out two years ago and have been taking it Very easy since then).

* When I lowered the amount of sweet potatoes and ate more meat/fat on the paleo diet, my skin would get better. When I increased the sweet potatoes (my main carb on the diet) I would get dimples. I dont seem to get dimples by rice for example.

* NOW.. The worst thing ever. 5 days ago i decided to reintroduce wheat/gluten.

As I wrote above I most likely got small amounts since I stopped the paleo diet a couple of months ago. But this time I had half a pizza..

I cant say for sure it has any connection. But I woke up that night with my brain going so fast it scared me. Got anxiety, border line panic attacks. Was scared I was going crazy/schizo/developing OCD.. My mind wouldnt stop thinking. It really scared me. Got a rash on my hip the day after as well. Skin dry.

Day after that, I switched back to paleo and 1 hour mindfulness meditation every day. Been doing this for 6 days now. Luckily it wore off. But I can still feel it a little bit. The anxiety is not all gone. And I dont feel as good as last time i went on paleo. Stopped eating sweet potatoes on day 5 and switched butternut squash as source of carb. My facial skin seemed to like that a lot. Or it could be that it took a few days for the diet to kick in. Will try to reintroduce sweet potatoes in a few days.

Whats wrong? Celiac? Any thoughts at all?

Regards Johan

Edited by JohanJohan
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// Not sure if this will be a double post. My last one didnt seem to get through. Paste it again.

When you are new poster, your posts will not appear until a Moderator has looked at them first. This helps to prevent spam and other inappropriate content.

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When you are new poster, your posts will not appear until a Moderator has looked at them first. This helps to prevent spam and other inappropriate content.

Thanks Kareng. Good to know.

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Sorry to bump my own thread here. I going to try to write down every symptom that comes. And then i just send a link to this thread to my future GP, nutritionist etc.

* Drank 4 tablespoons of olive oil to get calories. Stomach pain an hour later. Seems like my stomach doesnt like to much fat.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • 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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