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Non Coeliac Gone Gf-strange Symptoms
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I don't know if this is in the right place-bare with me.

My husband was dx with celiac disease 9 months ago.

My youngest child has recently been dx with dyslexia with severe behavioral/emotional dfficulties.He's been expelled from school.

There are quite a few links out there with dyslexia and other problems improving on the gluten-free diet.Thought I'd try him on it as we've nothing to loose.

To encourage my son into this I told him'If you do it,I'll do it'(gluten-free diet)

We are 3 weeks in,no noticable signs of improvement for my son as yet.

However I noticed weird things start happening to my body(this is so weird!)

First of all,within a week of going gluten-free the ezcema I have had on my face ,and scalp has completely cleared.My skin hasn't been this clear for years.

Also I have always suffered from constipation ,now (gluten-free)I'm a once a day girl(from a once a week if you're lucky.)

I seem to be eating a larger quantity of food but I've lost 8 pounds without trying.

All sounds great,but when I go to my friends house once a week,we always eat chicken and salad in a pitta bread.Not a problem you'd think as I'm not a coeliac.

Here's where it gets weird.The first week after the pitta bread I ended up in bed for 2 days with a migraine & vomiting.Just a coincidence?

The second week after the pitta bread,I woke up the next day with a banging headache and can only describe the feeling as akin to a monster hangover,but I didn't drink any alcohol.

Week 3 after the pitta bread,I woke this morning with these symptoms:

Headache,nausea

'Hungover' but had no alcohol

Racing heart

Massively sore tongue,eyes stinging.

The most scariest thing was 2 hours after the bread I came over red hot,sweating profusely,with nausea ,and the strangest 'tingling in my tongue and hands'

Now what's this all about?I don't know if it's the wheat or the gluten,allergy or intolerance.Never expected this to happen.My hands are still trembly and I want to sleep for a week.

Help!

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Humans in general don't take well to wheat. So, it isn't too crazy that you saw health improvements. You could have an allergy or problems with gluten.

Going back on gluten will be harsh for your system, like you described. Just because you went without it and it is hard on humans systems.

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There are quite a few links out there with dyslexia and other problems improving on the gluten-free diet.
Really? would you mind posting them, I am very interested in this since celiac runs in my moms side of the family and her niece (my cousin) has dyslexia. Has the diet helped your sons dyslexia?

Anyway... back on topic.

I think you could have a sensitivity to wheat/gluten, an allergy wheat/gluten, or possibly celiac based on your symtoms and reactions. Have you been tested for celiac or wheat allergy?

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I'll try and post a linkhttp://www.fabresearch.org/view_item.aspx

http://www.allergyconnection.com/allergychildrenfr.html

http://www.kidscanlearn.net/artdli.htm

As I say,no visible signs of improvement yet,but we'll try anything,cos boy is that boy hard to handle!

Docs won't test him for celiac disease as he has no bowel symptoms,so I'd be refused if I were to ask for one.(nhs system in uk doesn't allow you to choose your doctor)He'd think I was paranoid 'wanna be Coeliac!'(LOL)

Maybe I'll start with skin prick allergy testing,see how much it costs ....

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Thanks!

Docs won't test him for celiac disease as he has no bowel symptoms,so I'd be refused if I were to ask for one.(nhs system in uk doesn't allow you to choose your doctor)He'd think I was paranoid 'wanna be Coeliac!'(LOL)
That's too bad :( he should understand that you just want to help your son. Of course you don't want him to have celiac disease. You just want to help him get better.

I don't understand how some of these people become doctors. They are smart but some of them have no people skills and they don't think outside the box. "Well if my outdated textbook doesn't have it then it's not true".

Don't get me wrong here... I know there are many wonderful doctors :) My doctors are in the wonderful category compared to some of the stories I have heard.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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