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Non Coeliac Gone Gf-strange Symptoms


nikki-uk

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nikki-uk Enthusiast

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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MySuicidalTurtle Enthusiast

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.

Carriefaith Enthusiast
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?

nikki-uk Enthusiast

I'll try and post a linkOpen Original Shared Link

Open Original Shared Link

Open Original Shared Link

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 ....

Carriefaith Enthusiast

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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    • knitty kitty
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    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
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    • catnapt
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